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Debe2
01-02-2007, 09:07 AM
*** I don't mean to be too graphic in this post--but I am really scared and need help--if anyone out there has experienced something like this...
***It started a few days ago as a tingly sensation in the clitorus--not a good one! Non-stop. I thought maybe if I had sex it would stop-so we did so for the first time in 3 months ( I have been having lots of vaginal problems for so long-sex was out of the question ). It was gentle and caring sex-but I could not climax which is not usual for me. No real pain-but not great. Well after that the clitoral pain became unbearable. That was 3 days ago and the pain is just non-stop. It is a sore-raw-shearing-slight burny pain. The pain is also in the inside of the inner lips up top by the clitoral area. It hurts like crazy to wash myself or touch the area al all. I can't see ANYTHING wrong! Lucky for me I was able to get a Dr appt tom ( she must have had a cancelation-usually it takes months to get her ) but since there is nothing to see--I'm not sure what she can do. I have to say I am so scared-I really am. I don't think it is a UTI-no pain on urination-no increase in frequency. Any one ever had something like this happen? :confused:

SandyRN
01-03-2007, 01:05 PM
YES!! I have had that feeling, a lot...I have pelvic floor dysfunction and think that I have a mild case of persistant sexual arousal syndrome...But, I dont have it like some women do, it comes and goes every few months for me, but some women have it 24/7 every day of the year with no break. I think I would be crazier than I already am if that happened to me!! At least THAT part of my life is relatively normal, except with those exceptions.

I know what you're describing...it's horrible, and I'm sorry!

Hugs, Sandy

pm me if you have any questions, also, check the search button on this board for persistant sexual arousal , and you should find a few threads that may help you.

Sarojini
01-03-2007, 03:00 PM
Yes, me too. Just had an episode of it... I felt like someone was piercing my clitoris! I cannot stand it when that happens, but at least for me it is intermittent and resolves on its own. For me, it's related to how my IC and PFD flare.

miz_sunshine87
01-05-2007, 07:33 PM
yep, I've got it too. For me, I feel like a pencil is being rammed into my clitoris, and I have a throbbing feeling on my entire vulva, including my vagina. It could be described as pleasurable...but not constantly of course!

When I first got IC, my first symptom was the stabby clitoris and of course bladder pain. I was only 15 yrs old and I didn't know very much about anatomy, so I thought it was my urethra that was hurting. When I realised what it actually was, I was too embarrased to say anything. When my IC went into remission, so did the vaginal symptoms, and I never gave it a second thought. When my IC came back 2 months ago, so did the stabby/pressure feeling...constantly, but it varies in intensity. For a while my bladder felt so terrible that the arousal feeling was minor in comparison! But the last week or so my IC has calmed down significantly, yet the arrousal is 10 times worse!

I also read about persistent sexual arousal syndrome, and even read about a woman who had IC as well. Needless to say, this scared me a lot! I am trying to convince myself that the arousal is just referred pain from my irritated bladder, and just needs time to calm down, but I am prone to being a hypochondriac, so I am still worrying a lot about it.

broken_smile
01-12-2007, 06:03 PM
Hello Everyone,
That is one of my main symptom I have it is a horrible feeling like the clitoris is engorged, inflammed, and a pain full tingling like I have an electric current running through it. Sometimes it helps to lift the hood of the clitoris and cleanse it out with a Qtip and other times it hurts to bad to touch it. I have found the only thing that will soothe it is get in the tub and start runnning the water as hot as you can stand it and just soak in plain water. I have used some Lidocaine 2% gel that helps to numb some of the pain. There are times when I would like to cut it off or at least have it denerved. It looks to me like they could give us women to stop the engorgment like when a man gets an erection that won't go down. I know in men it can be causeb by some drugs or a blockage. It looks to me like they could treat us like they do the men when they have that problem. I could stand the IC pain better than the clitoris pain because when IC is flareup which is usually constantly my clitoris is flareup too. It is about to drive me mad. Ya'll are not alone.

Broken_Smile :loco: :cussing: :bonk:

Debe2
01-14-2007, 09:40 AM
***My gyna has no idea what it is--so she wants me to do a catscan. I went to another gyna and she said she sees nothing wrong. I asked if it could be vulvodynia--and she gave me gabapentin to take. She doesn't seem to think it's a pelvic floor problem--maybe nerves. The gabapentin is an anti-convulsent and nerve medication. I'm on 300 mg a day. I have read you need at least 900mg a day for it to work. So far the drug makes me extremely tired. The pain seems to have calmed down a tiny tiny bit. Not enough for me to live with. But the drug has some scarey side effects so I'm scared to go higher. I don't understand why this is happening to me! I was supposed to get a puppy today--but I had to back out of the deal because I feel too sick to handle all the care a puppy needs right now. I am so unhappy!!!

leelee88
01-14-2007, 10:08 AM
I have the same problem, It was driving me crazy!!!!!!! My uro said it comes with IC, but my GYN seems to think I have nerve damage..Some people call this Clitordynia, I call it a nightmare...Check out some of my threads theres alot of info on them about this....:smile tee

kjd
01-15-2007, 01:05 AM
Hi Debe2

yes I have this and its a nightmare! I have been diagnosed with vulvodyina and clitoradyina which is when the nerves in the genitals and clitoris behave strangely causing pain!
I suffer with strange tingling pain, throbbing, pinching, aching and knife like stabbing pain! I once had it so bad I had to go to Hospital and they gave me morphine! My mum said I was screaming at them to cut off my clitoris as I couldnt cope with it anymore!!

I dont remember this but it was so bad I was becoming suicidal! I had it none stop for 8 months and I cried everynight. I tried having sex which made the pain worse. I tried everything but the sensation was there constantly and I couldnt ignore it. I didnt sleep for months.

The best way I can describe it is that my clitoris feels engorged and really hypersensitive. If I touch it its like an electric current running through it.

the only thing that helped me is amyitriptaline drug! Without this I think I would have given up to be honest!

My urologist said that it is linked with IC and is commonly down to damage/irratation to the pudendal nerve. I have also been diagnosed with PN (pudendal neuralga) which is just another name for it. I have the same pain which travels down my legs and bottom and is the most hurrendous pain ever!
He said that sometimes the nerve settle down and sometimes they dont and there is no treatment apart from pain meds!!

At least we have each other to get us through. Until I met you girls I thought I was the only one with this and didnt know how I would survive! I'm crying now :-(
x

leelee88
01-15-2007, 02:36 AM
Well thats one thing for sure kjd, You do have us to help you all this..
I was like you I could not handle the sensation pain.. It honestly was making me:loco:, Thank God for Elavil, it helped settle it down from the sensation and then the cymbalta did the rest.. I do have the sensation sometimes during the day but not constant anymore, so at least I get breaks from the torture...and I have noticed I feel it more when im full, or constapated so I try not to eat so much.

kjd
01-15-2007, 02:39 AM
thanks LeeLee! I'm the same, its gets worse when I'm constipated or full! I suffer with IBS too so I try and take prune juice to avoid beiing constipated as it makes it worse!!

i am so pleased you dont have it constant anymore as its horrible isnt it! You deserve a break from it XX

Briza
01-15-2007, 02:47 AM
Debe
I also had this pain and sensitivity for almost a year straight with no outward signs of irritation, inflammation, anything. Everything looked perfectly normal. CT Scan...not to dissuade you from having one or go against your drs orders, just that a CT scan can be $$$ depending on your insurance, but I think both you and your doctor should do some research on vulvodynia and vulvar vestibulitis, as there are treatments for these conditions. For whatever reason, at least with the gyns I saw (about 7) no one ever mentioned the word vulvodynia or VV until I diagnosed myself with it and demanded treatment. Just google either one or both of these conditions and you'll find a lot of information that most drs will never tell you! Best wishes and hope you get some relief soon!:)

kjd
01-17-2007, 07:02 AM
Debe2, how did you get on at doctors?
I'm in so much pain today but cant find a decent doctor!!

:-(

Debe2
01-18-2007, 09:54 AM
***Yest. was one week on the gabapentin. The sensations have toned down-but as I said before--not enough to live with. I have many books and have done lots of research on vulvodynia. Clitordynia is even more rare. I can't believe this is happening to me. I have not even been formally diagnosed. I go back to the Dr on the 23rd. I think I will have to up this medication--and that means more chance of side effects. I'm already too groggy to do ANYTHING. This medication can also make you lose coordination--and make your eyes move involuntarily. I am scared to death of that! The books say you need at least 900mg for it to work--and that it takes time to work. I am going out of my mind. I feel sooooooooooo alone! My poor hubby can't take it anymore--I'm going into depression. Lost 10 lbs--dry heave if I try to eat. I think about ending it. I can't go on this way. It's not a life to live like this and it's not fair! Deep down I don't even believe I have vulvodynia!! I have done nothing to cause nerve damage to myself--except using lots of yeast cream when I thought this was yeast all along!! I can't beleve yeast cream can cause nerve damage!! I don't get stabbing or shooting pains. But I do feel swollen and sore. And highly stimulated in a bad way. I wake in the morning about an hour before I need to--in that hour I have pressure in the clit and feel if I urinate it will be better. I do so--it's better for a minute or so and comes back. I will pee every 10-15min in that hour. During the day that doesn't happen. Then it is just constant tingling--or something! I can't even describe it sometimes. I have thoght of having the clitorus removed---but I bet the pain would just move to a different area. Maybe a sex-change operation would do the trick! Ha! Does anyone out there think it could somehow be prempro? I have been on that for 4 months.
Sorry for rambling. It's not a good day!:help:

kjd
01-18-2007, 09:00 PM
Debe2 I am the exact same situation as you today! I am sat in my room crying and throwing things around out of frustration! Let me tell you if I could cut my clit off and have the garantee this pain/sensations would go I would do it!!!
I know you feel alone and scared right now but I do too! maybe we can help each other through this nightmare!!!
dont forget there are other medications which help with pain so its not just this one and the side effects will stop as soon as you come off them so you dont need to worry. I'm trying amytriptaline at the moment but one I had before made me sick!!
I have had formal diagnosis of vulvodynia but dont forget vulvodyina is not always believed to be caused by nerve damage but can be caused by nerve irratation, pudendal entrapment in the spine, sport trauma which could be horseback riding, bicycling or usng exercise equipment which has aggrevated the nerve. At the end of the day there may be other causes too so there is no point trying to figure out why you have this as it will drive you in sane!

I had a really bad urinary track infection which was mis-diagnosed so it led to a kidney infection and ended up in hospital. Anyway the infection went but then 2 months later I started having the pain!!!! It makes me wonder if the infection was the cause, as I have done nothing which could cause this pain and never had it before!!!!!!!!!!!!! God I could go insane trying to work out why I am here and suffering. i am sure everyone of us ladies asks, "why me"???!!!
These strange pressure sensations which make you need to urinate every ten minutes....well I have those too and boy they are horrible. I feel like I am slightly stimulated but not in a good way and I feel like I need to urinate even though my bladder is empty!!!
Now I know you are depressed and feeling alone but you need to get some strength together and you need to realise you are NOT alone and we are all here for you and know how you are feeling! please use us to help you gain strength to go on and try to be positive.
There are lots of medications you can use such as Tricyclic antidepressant or the anticonvulsant drugs which help with pain so dont give up yet. It takes time but you will find a drug which helps you and doesnt give you too many side effects.
Do you have a TENS machine?? if you can get one please do as it helps with the pain and anything is worth it¬ I did go through a stage of not eating either but then think of how much you are hurting your hubby as he would be worried sick about you! You need to pull yourself together for him and prove you can beat this thing and you will not give up!!! You are worth it and you need to fight!!!!
I know I need to fight too and find it soo hard to go to work which I do full time and sometimes cry in the toilets at work as I cant cope! i have no choice as I need the money! If I dont work I will end up homeless so I need to get through this!!
Have you taken a bath?? This helps me so try this! Also do you see a councillor???
If you dont then get to see one asap! She will help you get out of this depression!
Please PM me anytime if you need me

kjd
01-19-2007, 03:35 AM
Hi Debe2
How are you feeling! Well I know I was trying to make you feel more positve earlier but I am suffering so much now! I have just been in a meeting at work for two hours and I am in so much pain from sitting down all the time. I have sharp pains down the tops of my thighs, bottom and clitoris. I feel like someone is actually trying to piearce my clitoris.....how strange!!!

Anyway I was just sitting here thinking why have we all got this, why do we have to suffer!! Also what the hell causes this strange pain/sensations and why cant the doctors have more knowledge on it! It must be nerves but why do they become damaged/trapped!!! is there anything we can do to help it??!!!
I am just terrified I will be like this forever and what sort of life I will have! I am sorry I am so low at the minute but these last two hours have been torture for me and I had to try to sit there and keep a straight face in front of all my colleagues!!!
Well I am paying for it now and lying on the sofa now working at home! Even walking is hurting my vulva and I feel so sore but everything looks normal...I think!!!
Well I just wanted to talk to you all because you are the only ones who know how I feel and to be honest if it wasnt for all you ladies I dont think I would be sane anymore!
My family and friends dont understand and my doctors just look at me as if to say "well I have no idea how to help you, sorry"!!!!!
I can cope with the symptoms of IC (not to say that these arn't bad enough anyway) but vulvodynia is just the worst sort of pain I have ever experienced and had to live with!!!

If anybody can help me stay sane I would appreciate it. Sorry to have such a long rant but I am so upset and angry I have to suffer

xx

broken_smile
01-19-2007, 05:57 AM
Hi Everyone,
I have been dealing with this for a long time this was one of my main symptoms now that I think back on when I developed IC. I have had this pain since 1989 after a bladder infection. I was looking on the internet because I got to thinking when men get engorged what causes it. Well I found out the name for it in males is priapism. Well out of curiosity I googled female priapism or clitoral priapism and found a website that said Prozac, Trazadone, and Paxil could cause this to happen in women. Here is the website http://www.greenjournal.org/cgi/content/full/100/5/1089 Well I am on Paxil and Trazadone and have taken in the past Prozac but I had this before taking any of these drugs so these drugs are maybe aggravating my clitoris will talk to Uro about it. I wonder if the bladder infection I had in 1989 done some kind of damage to the clitoris or if the antibotic to treat the bladder infection caused it which was septra. The only medication I was taking when I developed this was birth control pills, ibuprofen and sudafed. Something had to cause it to start with this is so frustrating we all need to put our heads together and try and figure this out. This clitoral pain has cost me alot of joy and productive in my life. I have lost going on 18 years of my life. All of this crap came out of the blue. I went to bed in 1989 feeling fine woke up thought I had a bladder infection called doctor they called in prescription for Septra and the rest of my life went to h*ll. I am so rambling on. I stayed up all night and it is the lack of sleep that makes ramble on. Can the doctors take a scraping of the clitoris and check for anything abnormal going on with the clitoris? Well got to go I am exhausted.

Broken_Smile :bonk: :confused: :loco: :help:

broken_smile
01-19-2007, 06:04 AM
Hi Everyone,
When you get to the website I mentioned on Clitoral priapism look to your left hand side of the page an click on abstract.

Broken_Smile

kjd
01-19-2007, 06:30 AM
Hi Broken smile
Thanks for this information! I have been trying to figure out what the hell is going for a 2years now and I am still no confused as to why we are suffering with this strange pain!
I also had a bladder infection then after 4 months of Cipro (antibiotics) I was left with this pain and IC!!! Surely this must have been caused by the infection???

I wasnt actually taking any medication before this started so not sure about the cause of the nerve damage! Unless it was the antibiotics that damaged the nerves?? My neurologist said that the most common cause of nerve damage/irratation is from infection and the nerves stay irratated! But why???!!!
I just dont understand why the nerves dont settle down again!!! I have read about the Cipro and cant find anything that says it can cause nerve damage!
God its so hard isnt it and I wish I could find away to help us all!
I agree with you though Broken Smile we need to stick together to figure this out xx

kjd
01-19-2007, 06:44 AM
Hey there, I did some searching on clitoral pain and it took me to this site #
http://www.pudendal.info/

Also have a look at this website too http://vulvalpainsociety.org/index.htm
Looks like what we have is more common than we realise
xx

Debe2
01-19-2007, 09:52 AM
***Kisses to you both-kjd and Broken Smile. I wish we all lived near eachother so we could meet and go through this together--in the flesh! It is sooooooo hard to feel alone out here! My husband just tells me to see a shrink whenever I bring up my pain anymore. He's so tired of it--and who can blame him? We have been unable to have sex for over 3 months. I am really lucky in that I don't have to hold down a job anymore--there is NO WAY I could ever do it. With constant discomfort like this you just can't=can't push it out of your mind. So many family events have been ruined for me--I sit in pain and try to hide it while everyone around me is having a great time. That is how my sister's wedding went for me in Nov. My mom is coming for a visit in a few weeks and it will be hard for me to handle. Her husband ( my stepfather ) recently died painfully of cancer. My mom doesn't want to hear anything now but sunshine and flowers. I have tried to talk to her about this--but she doesn't want to hear it. Never heard of anything like this!
***Guess what....I had a terrible bloody uti right before this happened to! I was given bactrim--a sulfa antibiotic. At the time I was taking only birth control pills and premarin cream for vaginal dryness. Well, the bactrim gave me a allergic reaction--a rash all over my hips and thighs. Right after that it seemed my premarin cream was not helping me anymore. I had to use the max dose every night ( for 10 yrs I used the mini dose only 2 times a week. I at the time was in early menopause at age 39) . I was getting yeast infections every month ( at least I thought I was--they were not cultured ) and was using OTC yeast cream evey month. My Dr said it was time for HRT. So I went on Prempro. About one month in I got severe heartburn and was put on nexium ( which I still take ). The premarin cream was still not working and I was still getting yeast ( ?? ) infections. So my Dr gave me vagifem ( a pill estrogen replacement you insert vaginally ) and also diflucan to take monthly. She also gave me macrobid ( antibotic ) to take after sex..........hahahaha!!! I have only had to take one in the past 3 months!!! Then all of a sudden this clitorus pain began. My dr took a culture of my clit and vagina and said she thought it was yeast. I didn't. It felt diff. than anything I ever felt before. She gave me yeast cream and was going to send me on my way---but I was in such pain I demanded some lidocaine. So She gave me some ( I have 2% lido and it really does nothing for me ). Low and behold I was NEGATIVE for yeast. After that I had a hard time getting this dr to call me and tell me WHAT TO DO NEXT!!!!!!!!!!!!! So I went to another Dr ( they are all gynas ) and she kinda scolded me for not sticking with one dr!!! Even though that DR was NOT helping me!!! She was kind of nasty, but she did ask the right questions. She saw nothing outwardly wrong with me. But she did hear of vulvodynia--though she said she usually refers them for PT. So she put me on gabapentin--and that is where I am today. No formal diagnosis---no tests. So I just don't feel confident in her. I feel she will dump me if I don't respond right away to this medication. She is already the 4th Dr I saw ( I will spare the details of that!!! ). I feel a tiny bit better today--not that it will last.
***I just wanted to get my story out so you know something about me when we talk again. Stay on the boards---I need you guys!
Love you all!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!:rolleyes:

Debe2
01-19-2007, 09:58 AM
PS I live in Arizona. I don't know how to add that to my posts! :)

kjd
01-19-2007, 11:37 PM
Hi Deb2!
Dont worry I'm not going anywhere I will be staying on the forum as I need you guys too!
without you I dont know what I do! I wish we all lived near each other too as it would be so nice if we could meet up and give each other the strength to get through this. I live in England and I dont know anyone else who suffers with this!!!
I think your husband needs to be a little more understanding personally! He has no right to tell you to see a shrink! This is like he is suggesting its all in your head!!!!
I didnt have sex for 12months and I know how hard it was for my partner but if he once suggested I saw a shrink I think I would have punched his lights out there and then! If I did live near you I would be having words with your husband and telling him not to say anything like that to you again!
I know its hard for him too but he needs to understand its you who has to live like this and its you who has to suffer with the fear of being like this forever!
As for your doctor, well I'm on my 4th doctor too and he is uesless! They just dont know what to do with me! I had thrush every months for about a year( well I thought it was thrush anyway) and they just looked at me as if I was mad when I told them about the clitoral pain!!!!
I dont really talk to my family about it as thhye really dont understand me and try to change the subject! I know they care but they just dont understand and would rather pretend its not there! Well so would I but its us who has to sit there trying to smile and act normal!!!
Unfortanately I have to work as we have no money so I dont have the choice! I have been know to scream and cry at my desk in pain but still not go home as I need the money! I take heat pads with me and sit on a cushion but it doesnt really help! I suffer with ME too so I have such bad fatigue.
I even cry on a sunday as I know I have to go to work and I dont know if I can get through the day! But then I have to, dont I?!?!!
I have to keep finding the money to pay for these doctors too!!!
I hope you find a good doctor soon who understands you and you can be confident. I hope i do too :-(!!
I know your mother is going through a bad time now and she must know how much you are hurting with this condition! Maybe she just cant cope to hear it now?! Maybe try talk to her in a month or so?
Dont hide your pain though because its you at the end of the day and you cant change and why the hell should you hide your pain for others???
Now you stay strong and fight this and we will get through this togther. Oh and next time your husband tell you to just go see a shrink you make sure you stand up for yourself and tell him your pain is REAL and YOU have to live with it! Oh and tell him if he had has to walk round with a painful/sore scrotum all day I am pretty sure he would be a 100 times worse than you are right now??!!!
I am not saying he doesnt love you, I just think that our men can sometimes be inconsiderate and suggest that we are making a big deal out of nothing. Do you know what I mean??!!!
You have a right to shout about it and make sure everyone is aware of how you feel because if we didnt we would go insane holding it all inside!!!!
You take care, big hugs
Kate

tuazmom
01-20-2007, 06:03 AM
Hi all, I have had it too for years. May I suggest Lyrica for that pain. It REALLY helps alot! I hope you can try it. I do think it is linked to the pain and inflammation caused by the bladder and surrounding nerve tissue.

Marsha

Debe2
01-21-2007, 09:45 AM
tuazmom: How much lyrica do you take? Do you take it for clitoral pain? Have you tried gabapentin? That is what I am on right now.:cat:

broken_smile
01-21-2007, 06:54 PM
Hi everyone,
I am so disgusted because my clitoris got in such bad pain Saturday evening that I went to ER. I got there at 6:00 pm and did not get out of there until 4:00 am Sunday morning I got such a stupid doctor but he was at least nice. I didn't have a UTI which I am grateful. He did a pelvic exam and a pap smear took some swabs and sent them to the lab well everything came back normal. He was generous enough to give me pain medication in my IV before doing the exam. He said my clitoris looked great except I couldn't hardly stand for him to touch it. He did know that I was in pain though so he gave me some for pain medication which I so grateful. He told me he thought it was referred pain from my IC so ask him did they do rescue instill with the Lidocaine, Heparin and Soduim Bicarbonate he said no that he was not a urologist. I told him that my urologist let me instill them at home and I wasn't a urologist. I think he absolutley did not know about the resuce installation. There needs to be some way to educate these ER doctors to understand how to help an IC patient in a crisis. My urologist is over two hours away and the one in my town is a a*s. Then I finally ask him if it was a man with pain in his penis and that I was being serious that I was not joking what would they do for him he said well men did not really have these problems and the penis was just different. I thought to myself that IC male patients that have IC would beg to differ with him. I sure the male IC patients would be upset with a doctor to think that his penis could not hurt because he just though it didn't happen to men. I then thought I sure hope he never develops IC like some other men on this site have he would be in for a rude awaking to find out penis do have pain just like clitoris. I couldn't be mean so I kept those thoughs to myself because he was nice enough to help me with my pain which according to his test all coming back negative some ER doctor would just think you wanted drugs. He did not treat me like that so I guess maybe he was not so stupid but not educated on IC. He told me to follow up with my Urologist. He did give me 4 Percocet to take home and a prescription for 10 more even though I told him I had Lorcet he was nice enough to over something a little stronger. I guess I need to go I am rambling due to exhaustion. I will try to post as soon as I can again but been going through some bad pain. Love you all and I wish I could figure out the answers but if I find some help for this clitoris pain from Uro everyone hear will be the first to know.

Broken_Smile :grouphug: :grouphug: :kiss: :kissing:

tuazmom
01-22-2007, 03:52 AM
I thought this posted before, but I don't see it. Have you guys tried Lyrica? I it great for that kind of pain. If you want more info, I can give it to you.

Debe2
01-22-2007, 09:29 AM
***Yes I am interested in hearing about Lyrica. Have you used gabapentin??

Debe2
01-22-2007, 09:35 AM
Broken Smile: I'm sooooooooo sorry to hear how bad things got for you. To have to wait that long in the ER is insane. At least you got pain meds--but really-what is going on that no one can help us? I hope you feel better today.
***My own situation has calmed down a bit more. BUt suddenly I have an earache in my right ear. Out of the blue. It says in the gabapentin side effects that earache is rare. So I wonder if it's related? I see the Dr tom. at least. BUt she is so nasty I would not doubt that she would refuse to look at it since it's not her field! ( she's a gyna ). Feel better!:angel:

ABliske
01-22-2007, 10:26 AM
So sorry that you ladies are hurting so much! My heart goes out to you. I have a ton of clitoral pain along with bladder pain and urethral pain. I was going to my OB almost daily a while ago. And there wasn't anything he thought it could be. I also got a CT scan which didn't show any results. I would also advice against getting one. Unfortunately, I just don't think it will help with a diagnosis. I literally thought my bladder would burst while I was getting mine because you have to drink tons of fluid.
I'm taking MS Contin (morphine sulphate) every day. I never really knew that others had this type of pain. It's just a constant feeling for me which makes it hard to even get up out of bed in the morning!

broken_smile
01-22-2007, 11:26 AM
Hi Everyone,
I tried neurotin and lyrica with no results but bad side effects. I wish it had worked for me. Those of you who can take it I am so glad it has worked for you. It is so nice to here from people that get relieve. You know the weird thing about IC is everybody has to find what works for them it is sad we just can't take the same things and get better it would be so much easier. Those of you who have not tried Neurotin and Lyrica it is worth giving it a try what do you have to lose and it maybe the very thing that helps you. I am still having clitoral pain today but not as bad as it was but still can't sit still. I am making an appointment to see Gyn tomorrow I found out this gyn has studied up on IC and does resuce installations. I hope it will not be to long of a wait to see him. I am going in and I am going to stress the horrible pain I have been have in clitoris and I am not going to leave until I get some kind of help. I was first considering going back to Uro but I got to thinking that is like a male gyn. I will just see my uro for the IC and try to use the gyn to help with the female side of this. IF this Gyn can't find the problem I am not giving up I am going to search high and low to find a gyn that can help. I can not live like this anymore. I appreciate all the support Debe2 and kdj it means the world to me I wish we could all get together. I love each and everyone of the IC patients on this forum. I will get back with all of you as soon as I can. Wishing everyone of you to find you answers.

Broken_Smile
:pray: :grouphug: :grouphug: :kiss:

tuazmom
01-22-2007, 12:31 PM
Hi, just wanted to let you guys know that if you haven't tried Lyrica, please do try it. Give it some time and see if it doesn't help. It's worth the try.

Fluffy2
01-22-2007, 12:41 PM
tuazmom- have you gained weight with this drug? It seems like every drug for IC and related conditions has weight gain side affect. I woke up this morning with heaviness and tingling/numbness/pain down there. First time that has happened. I was really feeling so much better lately too with my symtoms. Not crippling pain but definite discomfort enough that I had to take advil for it a couple of times.
I pray it goes away, but what if it doesn't!!!

tuazmom
01-22-2007, 12:57 PM
Yes, I did gain weight, about 15 lbs, but it was all worth it.

lisalau
01-22-2007, 01:09 PM
I have said this elsewhere (may be even in this thread) but i find this to be the most psychologically devestating part of this disorder
At times i struggle to not get a knife and stab or cut my genitals off!
I live with ice between my legs and much as it hurts, it relieves someof the intensity
i could scream and wish to grow huge talons (like wolverine) and scratch the walls to bear witness to the pain i feel
i want my girl bits to be clean and sweet and have pleasant sensations, not this overwhelming annoying irritating mind blowing throbing and aching that interferes with my sanity
when i had acute pancreatitis attacks every week, i was put on morphine injections 4 hrly around the clock for 7 months. During that time, i forgot about this condition as the morphine obscured it. When the condition was dealt with and i asked to be taken off the morphine, i endured not only withdrawals but the return of this condition with a vengence and even though the docs tell me acute pancreatitis is the most painfull condition they know, i would endure it gladly in place of this (at least there is some respite between attacks)
I am loathe to ever recommend narcotics to anyone but i have to admit that they DO reduce these sensations remarkably.
Sadly i do not believe any doc would prescribe them for this because they have no idea what we are dealing with. When i was given the diagnosis of chronic pancreatitis, i was GREATFUL!!! Finally i would be given some pain relief and though i could deal with the chronic pancreatitis, i could no longer live with this clitoral pain. I had contimplated suicide, i saw no other way to stop this pain that was ruining my life and relationships. I admitted this to doctors (not the suicide part, the fact that i needed the relief much more for my clitoral pain than for my pancreas) and they dismissed me so i feel so strongly for those of you that have no other RECOGNISED pain conditions that give the doc the reason they need to prescribe you the relief you so need and deserve
I am crying for you,

tuazmom
01-23-2007, 04:04 AM
Hi to all, so sorry to hear of your pain, but at least we have each other. I thought I was the only weird one with this problem. It feels like I'm being electructed down there and the clitoris is the worst.
I had a doctor tell me that the bladder and clitoris have the most nerves in them than any other part of the body. The major nerve from the pelvic region feeds right through the clitoris. It is a major nerve highway. No one understood why it happened, but for me, all this began after a vaginal hysterectomy 10 years ago.

I believe it is from inflammed nerves that get "turned on" and can't be turned off. Most doctors think it actually is programed into the spinal column - hard wired, if you will.

I do hope you all find some relief. I know some anti-depressants help, as well as Neurontin or Lyrica. The morphine never really helped me.

When I search on the internet for "clitoral pain", almost nothing usable comes up, just a bunch of porno stuff. I guess the best resource is the Vulvodynia or Pelvic Pain website.

I wish there was more understanding and compassion for this pain. I always told the doctors, "If your penis hurt like my clitoris hurts, you'd have some compassion and some idea of what this is like".

Fluffy2
01-23-2007, 04:16 AM
I am wondering (since this feeling is new to me), if this is just another symptom of the IC pain. I had 2 cups of Bengal spice tea the night before this pain and sensitivity started so should I suspect this or another culprit in my diet. I really am not that careful with food so much except tomato sauce. I don't drink caffeinated beverages and pop, but now I wonder about that spicy tea! I guess I am still sort of learning what my triggers are really. I am not on any meds as of yet as I consider my IC fairly mild compared to some of the ladies (and gents) here.

leelee88
01-23-2007, 04:19 AM
Spices are a big trigger for me esp cinnamon....

Debe2
01-23-2007, 02:06 PM
***It amazes me that there really are so many of us out there with this rotten problem! I thought no one would reply when I posted this thread.
***Last night I felt well enough to excersize--big mistake. The treadmill set everything off again. Today I saw the gyna for a follow-up. She has increased my gabapentin to 600mg a day, and I can go up to 900mg a day if I need to. I hope I won't have any side effects from this dose. Already I am very tired-and my eyelid twitches now and then ( this is on 300mg a day ). I am willing to try the higher doses though. I would give anything to be able to enjoy some days without my vagina in the forefront all the time. My mom is coming for a visit soon and I would like to enjoy her and not cry all day long.
***When I was a little girl--I was so happy to be female. Never-never could I have dreamed something like this could happen---for no reason at all! Nothing has happened to me to pinpoint this to. I went into menopause early--age 35--verified at age 39. This whole thing is insane!
Love to you all!
:smile tee

Fluffy2
01-23-2007, 03:34 PM
I am feeling a little better today. Just a little itchy now but at least not experiencing that throbbing discomfort that I had yesterday. Must've been the tea I drank. The first ingredient was cinnamon, then cardamom and ginger. Seems so unreal that herbal tea could make you feel so terrible.

I know all this could be worse, but I can't help but still feel sad. My life has been really changed. I find myself struggling to make family dinners now as there seems to be so little I can eat the same as my family. I really miss going to Tim Horton's ( coffee shop). You take these things for granted. Same goes for sex. I used to take that for granted and complained that it was too available. I didn't have a huge sex drive then, but now it is really diminished. Who wants to when it is misery during and after!!!
Better days ahead!!! Just felt like a little rant :rant:

broken_smile
01-23-2007, 08:12 PM
Hi Everyone,
Pain is back. I am so miserable I ask my husband if he would just shoot me but he said he could not do it. He said he would shoot himself before he would me. I told him the only thing that keeps me hanging on is God because I don't want to do something that I may not be forgiven for. I am so desperate right now. I did call the Gyn to get an appointment but got the stupid voice mail but I am waiting for them to give me a call back. I hope I can get in soon. I also have an appointment to go to Uro February 8, 2007. I went to sleep last night with a heating pad between my legs at least I was able to sleep awhile last night. I am going to talk to the two doctors and see if I can get into a pain management clinic for long term pain care. Well I guess I will talk with you all later. I hope between the two doctors I can get some relief. Love you all. Thanks for all the support.

Broken_Smile
:cussing: :help: :loco: :bonk: :headbang: :grouphug: :grouphug:

kjd
01-23-2007, 11:05 PM
Oh dear Deb2, exercise is a big no no to me!! Any type of exercise gives me a huge flare and I dont know why!!
I really hope you get some relief soon and feel better for when you mum comes to see you! I know how frustrating and horrible it is as I feel exactly the same! I just sometimes wonder "why me", but I spose we need to try to stay positive
x

kjd
01-23-2007, 11:08 PM
broken_smile, you hang in there and try to find somme strength to keep fighting!!
We need your support so you have to keep fighting and dont let it beat you. you deserve to have some relief and I really hope these doctors help you. It's amazing how many of us suffer with these symptoms isnt it. I thought it was just me!
Well maybe we were supposed to help each other through this girls?!

take carex

violethillfarm
01-24-2007, 06:37 AM
You know, it breaks my heart to read these posts which is why
I don't check in very often these days.

My impressions is that so many of you are young ladies and it is so
sad to me that young women are suffering so much.

I have lived with numerous bladder/vulvodynia issues for decades and
in part because these issues have only been openly discussed in recent years.
Until I found this site, I had no idea that what was wrong with me
could possibly be treated although like the rest of you a "nearly normal" life
most of the time is not a normal life. The array of meds we all take
help most of the time but don't cure.

You can live with the constant pain, depression and anxiety but it takes
a toll. You become old before your time, you turn inward and become
isolated.

That is why, even though it's hard to read these posts I rejoice in the fact
that here is a place that women can find solace just in knowing that they
aren't alone as so many of us thought we were for a very long time.

Debe2
01-26-2007, 10:12 AM
***Doing the 400mg of gabapentin now. Working myself up to 600ma and then 900mg if I need it. Today if I lean on it wrong or touch it it feels like a knife is being stuck in it ( the clitorus ). I also feel a constant, constant, constant dull rapid vibration going on--someplace in there--I can't even tell where anymore. I have about had it. This is never going to end! I don't think the gabapentin is working ---I don't even believe I have this nerve thing. My dr said I don't need an ultrasound coz nothing could be pressing on the clitorus coz it's bone there. But I think I need a ct scan or something. Something had to be going on in there. My first dr wanted to do the ct scan--but I didn't want to have to drink all that barium--it is so awful. But maybe I have to. I am sooooooooooooooo unhappy. Sorry everyone. I have no place else to cry anymore. My husband no longer wants to hear it.

broken_smile
01-31-2007, 06:46 PM
Hi Everybody,
I go to the doctor today at 5:00 pm. The doctor is OB/GYN I don't know if he can tell me anything or not but I pray he can do something to ease this clitoral pain. I must be aggressive in letting him know how bad this is destroying my life. Everybody say a prayer. I will let you know if I find out anything. If can give me medications or something to help with awful pain everyone here will know all about it. XOXOXO

Wishing everyone a pain free day!!!
:pray: :grouphug: :kissing:

Debe2
02-01-2007, 10:14 AM
***Good luck to you Broken Smile!! I hope you find an answer! Please do share with us whatever happens! I am still waiting for the gabapentin to kick in fully!
Hugs!:pray:

deborah bush
02-01-2007, 10:33 AM
Hi deb2 what is gabapentir? How are you doing? I am feeling better. I started taking 900mg. of neurontin at night and that is making me sleep. So my doctor agree to increase my neurontin. I am going to have my ct-scan on Monday at 12noon and I will let you know what happens. Deborah Bush

Debe2
02-01-2007, 03:29 PM
***Oh--I misunderstood you--I thought you were decreasing your neurontin!
So you are feeling better at 900mg? How long have you taken the 900mg? I am slowly increasing my dose--I'm up to 500mg and it's not enough yet to do much for me. How much are you increasing it to? If you take it all at night, does it keep working during the day? Gabapentin is the generic form of Neurontin. That is what I take. I'm so glad you are feeling better!!! Remember to let me know how the ct-scan goes. :rolleyes:
Hugs, Debe2

broken_smile
02-03-2007, 02:13 AM
Hi Everyone,
Went to new OB/GYN. I told him all about my clitoral pain and Low back pain and have alot of trouble standing and sitting. He ask all about my IC and wanted to know how long I had been diagnosed with this and if the clitoral pain had been around since the IC. He ask had I ever had my sacrum and coccyx x-rayed to see if it had damage and I told him no. Well he started the exam on my clitoris and ask if I had ever had clitoral adhesions and I said I don't know. I then told him that everytime I pulled back the clitoral hood to rinse and clean under it that it would hurt like hell. Well he started looking all around the clitoris and ask what hurt when he applied pressure and I would answer. Then he did not tell me he was going to try to pull the hood back and stretch it to I thought I was going to rip into. He looked up at me and said that hurt like hell didn't I said yes and he said did it fill like I stuck a knife into you and I said hell yeah. Well he did start to do a pelvic exam and he started pressing all these points inside and he told me to let me know which ones hurt and dam if he didn't find them all. He also checked my scarum and coccyx from the inside and found the pain points there. After the exam he said I could have clitoral adhesions so I guess he tried to break them a loose when he stretched the clitoral hood back. He also told me I had terrible pelvic tension and congestion in the pelvic area. He then starts telling me how he is going to treat me. He told me he wants me to start pelvic physical therapy three times a week to help to get my pelvic muscle and bones to relax and relieve the tension and congestion. He gave prescriptions Skelaxin 800 mg 1 tablet every eight hours which is a Skeletal muscle relaxant to help relax the bones and muscles in the pelvic area, then he gave me a cream Temovate 0.05% to apply to the clitoris every other night to help it to heal, it is a synthetic corticosteriod and oxycontin 10mg I tablet every 8 hours for two weeks this is pain medication, he then ask me could I take Celebrex and I told him know that it bother my GERD and Irritable bowel so he then ask if I could take Aleve 220mg every eight hours I told him I could try it. Aleve is a nonsteroidal anti-inflammatory. He told me the Aleve would help with the inflammation. I was miserable when I left his office but aleast he could find the source of the pain in clitoris, Pelvic area, and in my sacrum, coccyx. He said it would take work to get me straightened out he said it was like a viscous cycle pain then tension, then the tension would start the pain all over. I can say the medicine has eased my clitoris but it sore as hell. I think when the clitoris recovers it will feel better but I tell you if it was due to clitoral adhesion they should have broken free with the force he used on me. I guess no pain no gain. This is only the second day since I started all this medication so I am keeping my fingers crossed that all of this helps. If this is the fix to the clitoral pain, pelvic pain, and the sacrum and coccyx pain all of you will know but I think we are headed in the right direction. I think if he can resovle these issues I can deal better with the IC. I did tell him the clitoral pain hurt so bad that I wanted to kick the walls down but he did get to see how painful it was for me. He also ask had I been to a pain management clinic and I told him know this might also be part of his plan. I will see him again in two weeks so I will update everyone on what the plan is. I love each and everyone of you and I pray this could help someone else and hopefully it will me. I will post as the treatment goes to let you know of the progress. Got to go for now I am very tired.

Love
Broken_Smile

broken_smile
02-03-2007, 05:24 AM
It is me again I forgot to tell everyone that the doctor did ask if I had tried neurotin and I told him I had but couldn't take it do to stomach pain and diahrrea. The ones of you trying Neurotin it sounds to me like it is a option for the clitoral pain. I hope the ones of you taking Neurotin will get some relief very soon.
I forgot to tell you that my Mama went with me and when that doctor pulled on my clitoral hood so hard my Mama said that I should have seen my face. When left the doctors office my Mama said she felt my pain. She said the doctor could have warned before doing that. I told my Mama it probably would have not been a good idea, sometimes not knowing what is getting ready to happen is better because I would have been tensed up like no tomorrow!!! LOL :lmao:

Love,
Broken_Smile

broken_smile
02-04-2007, 11:24 AM
Hi Everyone,
What I was referring to about the Coccyx pain and sacrum pain is when my clitoris pain and IC flares up I have low back pain with the most pain in the coccyx and sacrum. It is like when I am sitting down or standing it feels like alot of pressure on my coccyx and sacrum. The coccyx (tailbone) feels like the tailbone is trying to push through the skin. When my ob/gyn ask me to show him where the pain in my back was I showed him and he then ask had I ever fractured or injured my sacrum and coccyx and if it had been xrayed. I told him I had fell on my tailbone and sacrum right before developing IC and clitoral pain and IBS but didn't think much about it I was 22 years old when I did this and it was sore but didn't get it xrayed. Well when he was doing the pelvic exam he pushed down on my tailbone and sacrum and hit a trigger point that hurt like hell so then he knew there was tailbone and sacrum pain. I have to say the Skelaxin 800mg and Oxycontin 10mg has help to relax my back and pelvic and pubic region. I had to stop Aleve as it gave me horrible stomach pain I am going to try some regular Advil for the inflammation and take my Priolsec and see if I can get by with this if not I will just not be able to take any NSAID. I hope this explain what I am talking about to the person with pubic pain if not write back and I will tell you everything I can about my coccyx pain. I love all of you. I hope all of you are having a good day.:kissing: :grouphug: :pray:

Love,
Broken_Smile

leelee88
02-04-2007, 01:10 PM
Broken-Smile

Have you thought about Cymbalta?
It has been a lifesaver for me for my clitoris pain..I could not take the other drugs either due to stomach upset, but the Cymbalta does not hurt my stomach, Like I said it has gave me my life back, before I would just sit and cry all day long...Its bad enough we have to suffer from the pain of IC,
But having the clitoral pain was truly a nightmare, I also have pain in my tailbone, but have never had any injury that I can remember, I would never wish that on anyone...Well I am glad you have a doctor who has listened to you, I sure wish I could find a good URO...Well best of luck hun...keep us posted...

broken_smile
02-04-2007, 06:40 PM
Hi everyone,
LeeLee88 I have never tried Cymbalta but if what I am doing now does not help I will sure give it a try.

IBS and Tips I am sorry but if I find out anything about the coccyx being linked with the IC, Pubic pain, and IBS I will let you know. Right now I am not totally sure but I go back to my male OB/GYN in two weeks and I will know a little more to report.

I hope everyone is doing okay.

Broken_Smile

:pray: :smile tee

kjd
02-04-2007, 09:25 PM
Hi broken-smile
Well sounds like your doctor is listening to you a bit more which is brilliant news. I havent posted much this week as I have been in so much pain but it eased off a little today.
I really really hope you get some relief soon and the doctor can help you.
Sounds like that fall you had has done some damage to the nerves to me?!
xx

Debe2
02-05-2007, 08:30 AM
Broken Smile: What is a clitoral adhesion? What did the Dr mean by that? I fell butt first off a ledge about two years ago. I was black and blue--but I didn't see a DR. I don't have any back pain--I don't feel my tailbone pushing through my skin or anything like you discribe. But I do have the clitoral sensations. I was just wondering if it could be related to my fall? My dr didn't seem to feel it was a pelvic problem--she didn't really feel me inside much though.

CarolinTexas
02-05-2007, 11:08 AM
This might sound stupid, but what about alternative medicine? I always try standard medicine first and then go alternative if docs can't help. I apologize if I missed something and you have already tried this.

It could be a trigger point that is nowhere near the clitoris but can radiate there. Some PT's or specialized massage therapists are great at trigger points. Some PT's won't even consider trigger point but it can be very successful.

Trigger point is what your doctor was doing when he felt other parts and asked if they hurt.

Also, how about acupuncture? No, the needles would not go into your clitoris.

Both of the above cost about $100 each. It sounds like a lot but doctor co-pays and meds add up fast. Both trigger point and acupuncture have saved me from severe pain (feminine and SI Joint) when standard medicine couldn't make it budge.

I'm so sorry you are having to go through this, it sounds like absolute hell. I get this type of unbearable pain from time to time but, thank god, it goes away with lots of meds and exercise.

Hope you are better today. Don't give up, try everything.

deborah bush
02-07-2007, 10:30 AM
Hi Deb2

I had my cat-scan on Monday but the barium was not bad to drink. They told me that the doctor would have the results buy today. But I have not heard from him yet. I can not call his office.

The other girl I am interest about what your doctor had to saw about the clitoris pain you had. I just wonder if that is what I had. I hope that all the recommendation he gave you will work for you!!!!!

Deborah Bush

ABliske
02-07-2007, 11:16 AM
Deb,
I wish the best for you. I hope that the results can help with identifying your problem. I had a CT scan and the results did not show anything. However, they ruled out other potential problems.
I am also interested to find out the doctor's recommendations for the lady who started this post.

deborah bush
02-12-2007, 06:26 AM
Hi! ABliske, Deb2 started the post. Deb2, I am going over to my pain doctor office today pick up my medication for B&O sup. to take to pharmacy. I am going to ask girl about the cat-scan results. My brother in-law died yesterday at 2pm in MO. That is my older sister husband. He had the Lou Gehrig Disease. Deborah Bush:smile tee

Bessie
02-12-2007, 06:38 AM
So sorry to hear about your loss. Will keep you and your family in my thoughts and prayers :pray:

Debe2
02-13-2007, 09:17 AM
***I have been away a for a few days. So sorry to hear about your loss Deb. Let me know how the Ct Scan came out. I'm glad the barium was ok for you. It made me feel sick!
***ABliske-I started this thread. My Dr recommended gabapentin for me--that is the generic for neurontin. I have slowly worked up to 600mg a day. I have to say I feel ALOT better! Not 100%--but so much better. I'm going to stop at this dose for a bit and see how I do. But you can go even higher if needed.
Love to all!:angel:

broken_smile
02-18-2007, 07:51 PM
Hi Everyone,
Here is my treatment plan by my Gyn. He put me on Temovate 0.05% every other night equals(Clobetasol Propionate Cream 0.05%), Skelaxine 800mg every eight hours equals (Metaxalone), Lorcet 10mg. I went to him last Thursday and I ask him why he prescribed the Temovate cream and what did he find at my last visit. He told me my clitoris and clitoral hood and vulva area skin appeared to be thickened and small adhesions and that he also considered the possibly of lichen sclerios (not sure I spelled that right). I ask him how the Temovate was helping so well he said cortosteriods thin the skin make it more soft and supple. My clitoris has not felt this well in 18 years my pain is alot better and I think it is going to stop all together. The Skelaxine is so great for pelvic pain and the low back pain that comes with it. I am even having what I call normal urine streams to they come out more freely with very little pain. I am also taking very hot baths has the gyn said this would help loosen adhesion and I have been gently pulling the clitoral hood up, down, and side to side. I also check to make sure there is no build up under the clitoris. He also told me I was going to start me on physical therapy for the pelvic pain I start February 28th. He told me his goal was to get me out of pain and off pain medication. He told me I would have to stick with this because it would take time because all of this not start overnight. I told him as long as he was going to help me I would stay the course. He is a great GYN. My advice to everyone is find a GYN that is known to be a very excellent GYN. I just have always went to whoever was in my town but not anymore he is only like 45 minutes away and he will list to you he is not in a hurry to get away. I told him he was the first gyn to even look at my clitoris that I had complained to other gyn but they never even looked at it. I think when I went to my first visit he knew I was in pain because I told him I wanted to kick the walls down LOL. He also does bladder instillations in office and gave two extensions to reach him if I need a rescue instill. So everyone my advice is make your gyn exam your clitoris and vaginal area and every place they touch that hurts let it be known. I even pulled back my clitoral hood to show him where it hurt. I am tired and rambling but will post again when I start my Pysical Therapy for my pelvic pain and let you know what they do and how it goes. I love all of you and my heart goes out to all of you. Please don't give up be aggressive in your health care.

Love,
Broken_Smile

Debe2
02-19-2007, 08:11 AM
***That's wonderful news Broken Smile! I'm soooo happy for you! In my case the Dr's did look at my clitorus and said it is normal. No skin problems--no nothing. I am up to 600mg of gabapentin and seem to have have gone backwards--the pain is back. I just can't win.

tuazmom
02-19-2007, 10:16 AM
Hi all,

Boy, sounds a lot like what I have had, except I literally felt like I was being electrocuted and my clitoris was very inflammed, couldn't wear clothes, couldn't walk, burned like fire and I asked a Dr. to cut my spinal cord and I thought that would take care of all the pain. Didn't care if I was in a wheel chair, at least it would stop the pain.... but NOOOOOO, Dr. said that wouldn't even work.

Please try Lyrica if you haven't already. Neurontin helped, but Lyrica did more to control it. I always feel it now, but it is bearable. I literally could not get out of bed. I understand where you are coming from...... everything from the Dr's not knowing what to do and family and husbands turning away. It's heartbreaking.

Praying for you.

Marsha

Roxie2007
02-19-2007, 10:41 AM
HI! I have that horrible pain also. Last week I started using MSM gel......and put some on the 'sore area's'.....including around my urethra because I read that helped that pain also......and Low and Behold.....it has! That was 6 days ago and I haven't had any pain since! Ladies I have had that pain for years! Nothing helped it and I've tried lots of things thru the years! It's been terrible! I have my fingers crossed that the MSM keeps working so well. Also I haven't had a flare since I started using the MSM......I am mystified! Has anyone else had this success with it??? Roxie

Debe2
02-20-2007, 08:06 AM
Roxie2007: What is MSM gel? What do the letters stand for?
Debe2:confused:

broken_smile
02-20-2007, 06:02 PM
Hi Everyone,
Debe2 everything looks normal down there to me but my gyn said every doctor has different perseptives on things. Why don't you ask to try the medication and just see if it helps it maybe one of those things that don't look bad but is just like I bladder it feels like and infection but it's not. What do you have to lose. Roxie never heard about the MSM but I don't doubt it works for you. I say do what ever it takes. Debe2 just tell the doctor that you know someone who has tried it and you would just like to try it to aleast mark that one off of your list. The Skelaxin 800mg has improved my leg pain, knee pain and low back pain. I can actually feel my pelvic floor muscle moving and twitching like it is freeing up the tension and I don't see were the costeriod cream Temovate 0.05 could do that much damage. I looked up the lichen sceloris (sp) and my vaginal area does not look like that disease I think my vulva skin has changed like the doctor said and thickened. Roxie so glad you listed another alternative I will put that away in my mind for later in case what I am doing right now quits working. Please try Debe2 and kjd and Roxie if you like. Please let me know what you decide to do. It took 2 weeks to notice a change but my mother said I am walking up more upright than leaning over like an old lady. I love you all and I hope I didn't sound to pushy as I want each and everyone to get relief from this curse.


Love,
Broken_Smile :pray: :grouphug: :kissing: :flower:

Debe2
02-21-2007, 09:42 AM
Broken Smile:
***No you are not pushy at all--in fact you are a real sweetheart! I am so happy that things are going well for you! You deserve some relief! Keep feeling better!
Love,
Debe2
:woohoo:

deborah bush
02-26-2007, 07:37 AM
Hi everybody

Debi I had a Triple Bone Scane done last Friday. They siad that the doctor would have the report from the scan. I let you all know what they find out. Deborah Bush:hi:

Debe2
02-26-2007, 08:14 AM
***Deborah Bush: I was getting worried about you! I tried to send you a private message but your box is full! How did the CT-Scan go? You never said what happened. Why did you get a triple bone scan and what is that? Please let me know! Hope all is well.
Love, Debe2
:angel:

happymom
03-05-2007, 06:32 PM
Girls,
I was moved by your touching stories. I too have clitoral pain. Please get on good pain meds while you are waiting to find a cure. Ask you gynecologist to refer you to a good pain specailist. You should not have to suffer with pain.
Happymom

deborah bush
03-14-2007, 06:18 AM
Hi Deb My Scan really didn't show anything at all. I am really feeling down in the dumbs. I have been thinking going into the hospital. Deborah Bush

Debe2
03-14-2007, 11:10 AM
***Are you saying the ct-scan and triple bone scan both showed nothing? What is happening that has made you want to go into the hospital? I was doing really great for a few weeks--then I made the mistake of thinking I was ready to try sex ( for my husbands sake )-and now I am feeling awful all over again. Why did I even try? Why? Please keep on touch!
***Broken Smile--how are you???

tuazmom
03-14-2007, 12:47 PM
Please try this if you haven't already. It is for nerve pain and helps so much. That clitoral pain will drive you nuts in a hurry.

Debe2
03-15-2007, 10:28 AM
***Are you taking Lyrica? What makes it better than gabapentin? I am trying to hold my dose of gabapentin to 600mgs--though I may have to go higher. Have you been on gabapentin ( neurontin )--if so, what makes Lyrica different?
Debe2:pray:

Kara29
03-15-2007, 10:34 AM
Lyrica has a longer half life than gabapentin (Neurontin). It last longer and you don't have to take as much of it. For example I used to take 3,600mg a day of Neurontin but with Lyrica I only have to take 300mg a day and only twice a day as opposed to the 4 times a day with gabapentin. In the end its all up to what you and your doctor decides which is best for you.

Kara

Debe2
03-16-2007, 10:22 AM
Kara29: I have read so many of your posts and know you have gone through so much horrible pain--I feel so awful for you--I really do. I hope these days you are doing better? ! Anyway--do you find the Lyrica actually keeps the pain away better than gabapentin...or is it just that you can take less? I know my gabapentin dose is still low ( 600mg ) --but I really really don't want to go so high on it. I'm not convinced it is the reason I'm somewhat better--I just don't KNOW! This type of drug scares me. The horrible discomfort has now changed to a low constant vibration-type feeling. I can live with it I guess---but I still can't have a sexual relationship with my husband without the pain getting worse afterwards. I also have strange feelings in the labia minora too. It's just insane. I am on HRT and use both vagifem and premarin cream ( on the vulva ) and yet still feel pretty awful vaginally. I'm so sick of it!!!!!!!!!!!!!!!!!!!!!!!!!!! :cussing:

tuazmom
03-18-2007, 08:31 AM
Lyrica is the newer Neurontin. It is formulated for nerve pain and does a much better job at taking away the pain.

deborah bush
03-20-2007, 12:31 PM
Deb2 I go to my pain doctor week from this wed. I am really mad that I never really get any feed back from doctor Brockoff office. I am not asking to speak to him, just lady in his office. Deb2 How are you doing?

Deborah Bush:hi:

Debe2
03-21-2007, 09:37 AM
***I know how it feels to get no feed-back from the Dr! It is soooo hard to find a good one. I hope the pain Dr helps you. I have taken a backward step and I'm not feeling too well. I'm trying to ride it through for now. Upping my gabapentin to 900mgs. Now I feel tired. Can't win!

Debe2

happymom
03-21-2007, 03:11 PM
Girls,

Thank you so much for your pain medication suggestions. I definitley need to try something new because my 4mg of hydromorphone (i.e. morphine) is not helping anymore. I went to physical therapy for my IC on Monday, and came home with excruciating pain in the clitoris. Formerly, it only hurt when it was touched, but I have been in constant pain since Monday. I am so thankful to have people like you, who understand my pain.
My doctor thinks that this pain is caused by Vulvodynia. I am wondering if it could be caused by prudential nerve entrapment. One side of my labia is swollen. What do you think?

leelee88
03-21-2007, 04:12 PM
That sounds like vulvodynia... Or clitordynia..

happymom
03-22-2007, 11:08 AM
Leelee,
Thanks for the information. I didn't realize that I had sent you several messages. I will definitely read your posts.

deborah bush
04-02-2007, 10:54 AM
Hi everbody.
I just won't to know if anybody have been dx. with PFD? Have a nice day.

Deborah Bush:hi:

Debe2
04-02-2007, 11:43 AM
***Where you dx'd with PFD? That means your pelvic floor is causing spasms that cause your burning pain and symptoms. Often physical therapy is suggested to help. My pain is clitoral and my gyna said for vulvodynia she usually refers you to PT. But she didn't say I have PFD or refer me for PT. Since I am feeling worse lately--maybe she will suggest it when I see her on April 16. I don't think I have PFD. I think I do have a nerve firing off the pain though. Who knows! There is a section here that deals with PFD you may want to read.
Hugs-Debe2
:smile tee

Kara29
04-02-2007, 12:15 PM
I have Vetibulitis and Pudendal Nerve Entrapment. Since the diagnosis of these two things I have had severe problems with clitoral pain. I'm not sure which of the two have caused it to be so bad but it wasn't there last year.
Pelvic Floor Therapy was suggested to me as an option to try to reduce the pain. Unfortunately I am in too much pain to do it at this time.

Kara

deborah bush
04-03-2007, 10:32 AM
Kara what is Vetibulitis? I have never heard of it.

Deborah Bush:hi:

Kara29
04-03-2007, 04:24 PM
The vulvar vestibule is that area of the female vulva (genitals) that is within the inner lips (labia minora) where the entrance to the urethra (the tube that leads to the bladder) and the vagina can be found.

Vulvar vestibulitis is defined as abnormal (dysesthesia) sensation in the vulvar vestibule. That sensation may be characterized as any or all of the following:

Tenderness
Sensation of burning, "hot", stinging, rawness, swelling, itching, dryness
Sensation of "being cut at the bottom"
Pain upon contact with clothes, especially tight fitting
Urinary frequency
Severe pain to touch / attempted vaginal penetration
Dyspareunia
Vaginismus often disguised as vulvar vestibulitis

Amy (Ihurttoo) has some WONDERFUL information and experience on Vestibulitis. You can PM her for more details.

Kara

happymom
04-05-2007, 08:44 AM
Hey Ladies,
I went to my gynecologist today, and she prescribed cymbalta. I will let you know if it helps in a few weeks. Hugs

happymom
04-05-2007, 08:50 AM
I am thinking about getting a refferral to a neurologist. I am wondering if my clitoral pain is due to PNE. Have any of you been treated by a neurologist?

Also, is there a spell checker in this program? :lmao:

sweetpea_ae
04-05-2007, 01:35 PM
Hi, when I saw your message I thought you were reading my mind. My pain has come just after a cysto with bladder distention and biopsy. It feels just like when I was a little girl and fell off the seat of my bike and hit my whole vaginal area on the steel bar. It hurts when I wipe and there is no visible marking or sores. Oh, and of course no sex. I am calling my doc tomorrow. His nurses told me the pain should actually be better and not worse. But obviously, something is wrong. This is a very frustrating condition with there being no clear symptoms. Everyone seems to be different. And to be told your not experiencing something you are is very frustrating. He told me to take a hot bath and get off my feet. Well that seems simple enough(NOT)These docs have obviously never experienced the pain. I'm not glad your in pain, but definately feel validated. Let me know what you find out if your comftorable with that as I will try and find you and let you know.

happymom
04-08-2007, 04:33 PM
Sweat pea ae,

Maybe you are having an allergic response to Lidocane. I felt the same way after every bladder instillation. Then, I asked them to stop using it and the problem subsided for a while.

kjd
04-10-2007, 01:19 AM
I am thinking about getting a refferral to a neurologist. I am wondering if my clitoral pain is due to PNE. Have any of you been treated by a neurologist?

Also, is there a spell checker in this program? :lmao:

Hey there!

I went to see a neurologist in London (who was a top specialist) and he confirmed that YES my clitoril pain/sensations are caused by nerve damage/irratation however there is no cure.

he said they are unable to operate so close to the spine and there is no operation they can do to actually fix a nerve!!! The only thing is to continue taking pain relief and he recommended accupuncture!!!!

So even if it was down to PNE or nerve damage they cant really do much to help. Although I do actually feel better to know what is wrong, if you know what I mean??!!!

My nerve is no longer trapped but its damaged and as you are probably already aware of....neves are not something a doctor is able to mend.

Hope this is useful
x

kjd
04-10-2007, 01:22 AM
Hi, when I saw your message I thought you were reading my mind. My pain has come just after a cysto with bladder distention and biopsy. It feels just like when I was a little girl and fell off the seat of my bike and hit my whole vaginal area on the steel bar. It hurts when I wipe and there is no visible marking or sores. Oh, and of course no sex. I am calling my doc tomorrow. His nurses told me the pain should actually be better and not worse. But obviously, something is wrong. This is a very frustrating condition with there being no clear symptoms. Everyone seems to be different. And to be told your not experiencing something you are is very frustrating. He told me to take a hot bath and get off my feet. Well that seems simple enough(NOT)These docs have obviously never experienced the pain. I'm not glad your in pain, but definately feel validated. Let me know what you find out if your comftorable with that as I will try and find you and let you know.


Sweetpea...mine got worse after cysto, hydro too and my neurologist said there is a chance it can cause pudendal nerve damage...................why wasnt I told this before I had it done???!!!!

Anyway I am not saying that you have nerve damage but just wanted to let you know my experience and that you are not alone xxx:)

Debe2
04-10-2007, 11:01 AM
Happymom: Is the cymbalta working for you at all? In a previous note you said your labia was swollen--did that go down?
KJD: How do you know when a nerve is entrapped? You say yours no longer is--did it mend itself? How do you know it no longer is entrapped?
***I have a pretty much constant vibration running through my clitoral area-and labia near it. It is not a throb, not a sting--a vibration. At times it can feel like burning or itching--but I know it is just a vibration. Very weird.
Debe2
:cat:

deborah bush
04-13-2007, 05:58 AM
How did your doctor find out that you had nerve damage with the clitoris?

Deborah Bush:hi:

deborah bush
04-18-2007, 10:24 AM
kjd How did your doctor know that you have nerver damage?

Deborah Bush:hi:

tuazmom
04-19-2007, 03:35 AM
Oh ladies, I can relate only too well. Thank God for the internet and the knowledge that we are not totally alone in this type of bizzare suffering.

I think it is the worst pain one can endure. That said, I suggest you try Lyrica. It is specifically for nerve pain and it has really helped calm that area and suppress the pain.

It's so hard to press on, but there is help and prayer and hope. Hang in there until you find help. I'm frustrated more people don't understand this problem and give us the help and compassion we deserve. It's truly horrific pain.

Please give Lyrica a try if you haven't already.

MC

heavenly7
04-19-2007, 12:43 PM
About 2 years ago I posted a thread about clitoral pain and there were few responses. Today I am again having continual throbbing for over a few months with some days of relief. For me it usually comes and goes but sometimes there are months of no throbbing. That is the only pain I get. It started in my forties after a breakup in a relationship. I was always masterbating and felt so ashamed. Then I went to a psychiatrist who prescribed anafranil. It seemed to help for awhile. I have IC and unprovoked vulvodynia. Over the years I will get it and the only relief I find is to put a point of an ice cube on it and just press til the numbness wears off. This currently has been going on for about 3 months and I am off elavil. I tend to watch my diet. But have been drinking herbal teas with cinnamon.peppermint, I am trying to go off as of yesterday.Anything to give it a try. My gyno who deals with vulvo suggested 900 mg. which has not helped one bit and have been on it for over a month.Last week I was ok for 5 days and now it is every other day. Although I had it all day yesterday. I am so so upset and scared that this could continue. I have usually had breaks for awhile. I am going to another dr in the same gyno group tomorrow as my dr. is away til next week. I wonder when I put the point of a thin piece of ice cube l have hurt myself I have mentioned this to my dr. and he didn't seem to think so. Does anyone have anything similar to me? I don't have pudendal nerve damage or anything like that.

kjd
04-22-2007, 11:18 PM
Hey

I dont have nerve entrapment I have pudendal nerve damage.

It is likely that pudendal neuropathy damage causes the sensory fibers that convey pain, causing them to be hyperactive even in the absence of stimulation. In other words, damaged "hyperactive pain fibers" trick the brain into perceiving a painful stimulus even though none is present. The hyperactive fibers may not even be properly connected to their tissue, thereby accounting for why people can experience pain in their clitoris

The pudendal nerve runs from you spine to your bladder and genital area so any type of pulling, throbbing aching pain located in the bladder and genital area is usually down to the pudendal nerve. This is what my neurolgist told me anyway. I also have an MRI scan and CT scan which enabled him to diagnose me.

I hope this helps?
xx

tuazmom
04-23-2007, 10:17 AM
Hi,

Just read your post. It all started for me after a hysterectomy and I have suspected all along that the surgeon damaged by pudendal nerve.
All the doctors I have been to say that nothing will ever show up on a MRI or CT scan.

How did you get properly diagnosed and what helps?

Thanks.

MC

tuazmom
04-24-2007, 03:17 AM
I don't appreciate being made fun of. When I said that the dr's told me that nerve pain does not show up on CT or MRI scans, it's not funny. Your answer was rude and not helpful. I thought we were here to help each other.

MC

Debe2
04-24-2007, 09:57 AM
***My DR. also told me that pain from nerves--in the clitorus at least--will not show up on a CT scan or on a MRI. I'm not sure what the diff is between nerve entrapment and pudenal nerve pain--I think all comes down to the same thing. Pain. Right now I'm on 900mg of gabapentin. I am having more good days than bad ones right now. But I'm not 100%.
Debe2 :angel:

happymom
04-24-2007, 05:49 PM
Hey girls. I found an article on clitoral pain from the NVA news/FAll 2000 that was written by c. Paul Perry MD, who is the director of the Pelvic Pain Center in Birmingham Alabama. He states, "Clitoral pain is a specific subset of vulvodynia produced by neuralgia of the anterior division of the pudendal nerve. It is manifested by pain localized in the clitoris with or without associated pain such as vulvar vestibulitis and pelvic floor myalgia... "The treatment regimen for clitoral neuralgia includes both medications known to benefit neuropathic pain and therapeutic desensitizing nerve blocks of the dorsal nerve to the clitoris with local anesthetics. Drugs that may be beneficial include: amitriptyline, gabapentin, diphenylhydantoin,divalproex sodium, trazodone, doxepin hydrochloride, and lamotrigine." I think this article was summarized from a book titled, Pelvic Pain: Diagnosis and Management.
I hope this information is helpful for you. I took this article into a neurologist this week, and he thought it was accurate. He is going to give me an MRI and perscribed amitriptyline. He did not reccommend nerve blocks because he felt that they may further damage the tissues.

happymom
04-24-2007, 05:55 PM
kjd,
I have had success with my IC symptoms since I began taking hydroxyzine at night (I can finally have a good nights sleep). My pain has been severe. Tramadol helps my daytime pain. Since Tramadol keeps me awake, I take 2mg of Hydromorphone at night (very strong). I had tried several other pain medications, but most of them kept me awake. Hopefully, I will have some clitoral pain tips in the near future.

happymom
04-24-2007, 05:59 PM
Debe2,
I got depressed on Cymbalta (maybe a coincidence), so I decided to wait until I saw my neurologist. He perscribed amitriptyline. Unfortunately, it makes me too sleepy and my mouth gets dry. As a result, I am still looking for the right mediation. I found a great article on clitoral pain. I hope it helps. Hugs.

auntiem
04-24-2007, 07:44 PM
Hi,

I am new to this on-line IC support and am happy to find a thread on clitoral issues and to know that I am not the only person who has this! It is a difficult subject to discuss with others, even doctors. My PCP chuckled when I described it to her!

I am currently in a flare and have a constant feeling of clitoral arousal. This seems to happen every time I have a "bad" flare. It is extremely annoying and distracting. It feels as though an orgasm will relieve it...but no...it just persists. I take ditropan, atarax and desipramine on an on-going basis. I have tried ice and lidocaine gel on my clitoris but they are not that helpful.

I got a couple of good ideas from this forum...talk to a neurologist about this and try Lyrica. I actually just acquired a neurologist as I have other neurological problems. (I had brain surgery 12/06 to remove a meningioma - a benign tumor. But that is another story...) I will be seeing her again next week and will run this by her. She gave me a sample of Lyrica for headaches and it worked great. (However, my insurance won't pay for it for headaches!) I still have some of the sample left and will try it for this clitoral arousal.!

That's it! So glad to find you all!

Auntiem

deborah bush
04-27-2007, 09:17 AM
Hi Deb 2 went to know how are you doing? Want to tell you guys that I am going to Miami, fl for my Botox next week for my bladder. Been have bald week. Been thinking checking myself into the Mental health ward. Maybe getting down to florda, hopefully I real feel better. I hope you all feel better.

Deborah Bush

Debe2
04-27-2007, 10:50 AM
Auntiem: If any Dr ever chuckled at me for bringing up clitoral discomfort I'd kick em in the teeth!! It's no laughing matter! I had the EXACT same thing as you--I did try orgasm and it made it worse. I have been on 900mg of gabapentin for over a month now and seem much better. I have good and bad days--more good lately. The bad days are not as severe as they were before. Now it is more of a itch-slight burn. When I concentrate I can feel that it is really a slight vibration going on down there. I am currently on prempro, and this Monday I see my gyna to switch to estrace and prometrium. I am hoping the more natural hormones may help me. We shall see!
***Lots of people here say Lyrica is excellent for clitoral pain--do try it. Please post how you do on it. If my gabapentin fails I plan to try Lyrica myself. I don't want to go any higher on gabapentin. Good luck to you!
Debe2
:pray:

kjd
05-02-2007, 12:59 AM
Hi MC

I think its such a complicated condition that some doctors dont like to diagnose it especially if it means admitting that a previous surgery for example caused it as I suppose that means its my fault.

For me my urologists said if the infection/paracite had of being caught earlier I prob wouldnt have this problem so I blame the doctors as they told me it was all in my head for months.

This makes me angry and I'm sure you feel the same also!!! Well my urologist in London, England diagnosed me based on my symptoms as well as my CT and MRI scan. I am not too sure what he could see on the scans as he didnt show me he just sent me a letter in the post given me his diagnosis. I guess sometimes the symptoms are enough to diagnose.

i would suspect that your operation may have done some damage as its such a big and complex operation but I guess its difficult getting a doctor to agree to this?

Also there is so real treatment anyway is there? All I use is Elavil and tens machine. Wish I could get rid of it for good as this is worse than my IC.

where do you live MC what are the doctors like? Can I ask what are your main symptoms

Kate

kjd
05-02-2007, 01:04 AM
Happymom

thats very useful info you found. I guess at the end of the day this is all down to nerves isnt it! Just such a horrible thing to have and I guess its not as rare as I thought as so many others are suffering.

Maybe its quite common but people are too embarrassed to talk about it? xx

kjd
05-02-2007, 01:22 AM
guys

just been given a leaflet from my hospital about this and is says the below:

Clitoral pain is thought to be caused by:-

1.an injury to, damange or irritation of, the nerves that innervate the vulva and clitoris.
.
2.an abnormal response of different cells in the clitoris/vulva to environmental factors (such as infection or trauma)


3.genetic factors associated with susceptibility to chronic vestibular inflammation


4.a localized hypersensitivity to candida (yeast)


5.spasms of the muscles that support the pelvic organs

6.entrapment of the pudendal nerve.

To diagnose Vulvodynia and clitoral pain, medical specialists will carefully review your medical history. You will be asked questions about your symptoms, sexual activity, diet, feminine hygiene, previous medical problems and medication use. Your doctor should also carefully examine the vulva, clitoris, vagina and any vaginal secretions for other causes of your pain such as infections and skin disorders. Many doctors will perform routine fungal vaginal cultures to ensure that an infection is not causing or worsening any irritation or burning. A "q-tip test" may be administered during your exam. During this test, different areas of the vulva and vestibule are touched with a Q-tip to determine the location and severity of your pain. If your doctor sees areas of skin that look suspicious during your exam, a biopsy of the skin may be required. Additionally, he/she may look more closely through a magnifying glass at any abnormal lesions in the vulva or may recommend a colposcopy, a test in which an instrument is used to look at the vulva more closely. Your doctor may also perform and MRI or CT to look my closely at the nerves to determine if there is any damage to the nerve.

dont think there is anything on here we dont know but thought it may be useful.

x

happymom
05-06-2007, 11:31 AM
Thanks for the useful information. I need to find a good vulvar pain specialist. A nurse at my pain doctor's office just warned me about my OBGYN. He said that my OBGYN has given most of his IC patients Interstim and promised them coplete pain relief. Soon, the patients are back in the pain doctor's office begging for stronger meds. My OBGYN tried to talk me into Interstim on my second visit and promised me pain relief. If I don't get better, I plan to get a neurostimulator from Boston Scietnific Corp. (not FDA approved yet), which uses micro-sized electronics, is minimally invasive and targets the prudendal nerve.

tuazmom
05-07-2007, 03:00 AM
Hi, someone posted that they wanted to know what my symptoms were. They began with severe burning in my bladder, urination was extremely painful, then everything inside began to swell - I couldn't walk, couldn't pick up my feet, I had to suffle them because it felt like an earthquake in my bladder and urethra to walk. After about 2 months like this and getting worse steadily, diahrrhea set in - lost 20 lbs, then one day my clitoris began to burn to, then throb like it was being pierced. Then the actual skin of the covering to the clitoris "fused" together. The pain then traveled down my labia to my left leg. Felt like lighting bolts.

That's been 10 years ago. Fought like you would not believe to live. I'm on Lyrica now and doing much better. I think it's a combination of IC and pudendal nerve damage. Makes me crazy to think a simple hysterectomy brought all this into my life.

So glad you ladies are out there and can understand. It sure feels lonely sometimes and 10 years ago, I felt like I was the only one on earth like this.

MC

kjd
05-13-2007, 08:59 PM
MC

my symptoms are so similiar to yours so you are not alone! I am supposed to be starting lycra next month and cant wait.

Been having sharp pains in my clitoris again today....feels like an electric shock which takes my breath away.

take care xx

auntiem
05-14-2007, 03:31 PM
Hi,

I spoke with my neurologist about clitoral pain and she said I need to address the underlying issue of inflamation rather than treating the "nerve" pain of the clitoris. So, although I have lyrica I'm sort of afraid to try it...and my samples are limited.

On a positive note, my PCP, who had originally chuckled when I mentioned constant clitoral stimulation, gave me a referral to a specialist at the Women's Continence center at UCSF. I am so looking forward to that appointment (in July) and hope she will have some treatment strategies that will work for me. My urologist is a really nice guy but I think his knowledge of IC Tx may be limited.

Maryann(Auntiem)

Debe2
05-15-2007, 09:01 AM
Auntiem: What did she mean " the underlying inflamation " ? My Dr. said there is NO inflamation. Did she SEE inflamation? Did she just say that and see you to the door? No suggestions on HOW ? I don't think any of these Drs know anything about this. If I were you I would try the Lyrica because I believe it is a nerve thing. I am on gabapentin 900mgs. I also just started natural HRT ( I switched from prempro ). I was 100% better for one week--and now the clitoral thing is back again. I'm so sick of this. You have such hope when it goes away--you think it's for good--but no. It comes back. I may have to up my gabapentin and I really don't want to! If you try Lyrica please post how it works for you and the mgs you are taking. I have heard good things about it--I may try it too. Good luck!
Debe2 :cussing:

Debe2
05-17-2007, 11:00 AM
***Just to update--I have been 100% better for the past two days. So I guess I will have to roll with it--take the good days as they come. I'm not sure what's going on--but if I have more good days than bad I'll be happy!
Debe2
:woohoo:

deborah bush
05-18-2007, 04:12 AM
Hi Deb2

I am having some bad days. I having been trying to getting hold of the office magner of Dr Brookoff it has been hard to get hold of her. How is everybody doing?

Deborah Bush:smile tee

happymom
05-21-2007, 04:29 PM
Debe2,

I have started using Lyrica and my clitoral pain is getting better. I will keep you posted.
Do you think that you are feeling better due to HRT? I am 32 and was wondering if I could be a candidate for tying HRT? Thanks.

Happymom

Auntiem: What did she mean " the underlying inflamation " ? My Dr. said there is NO inflamation. Did she SEE inflamation? Did she just say that and see you to the door? No suggestions on HOW ? I don't think any of these Drs know anything about this. If I were you I would try the Lyrica because I believe it is a nerve thing. I am on gabapentin 900mgs. I also just started natural HRT ( I switched from prempro ). I was 100% better for one week--and now the clitoral thing is back again. I'm so sick of this. You have such hope when it goes away--you think it's for good--but no. It comes back. I may have to up my gabapentin and I really don't want to! If you try Lyrica please post how it works for you and the mgs you are taking. I have heard good things about it--I may try it too. Good luck!
Debe2 :cussing:

Roxie2007
05-22-2007, 03:43 AM
HI Happymom, I don't think there's an age limit HRT.....I think they go by your hormone levels as to whether or not you need HRT.
I use Lyrica now for the severe body pain that I'm having and it's working for that but causing me weight gain. Are you having any problem with weight gain? I read that it does cause rapid weight gain. Roxie

Debe2
05-22-2007, 09:23 AM
Happymom: What Roxie says is true--you need a blood test. Have your FSH,LH, TSH-and most importantly your estradiol checked. If the latter is below 100 then you can really be helped by estrogen. There are alot of factors involved-but if you are a candidate for hrt it helps alot. I do believe it's helping me.I'm post-menopausal and need the hrt. I went into menopause at age 35. I'm 50 now!
*** I'm not sure about the gabapentin though. I have alot of good days-but today not so good. My bad days are no where near as bad as they used to be. Please keep us posted about Lyrica--I guess it works pretty fast? Gabapentin doesn't. How much Lyrica are you taking?
Debe2
:cat:

happymom
05-22-2007, 02:57 PM
Roxie and Debe2,

I haven't gained any wieght with Lyrica. My family has a high metabolism, so I am hoping to not gain wieght. I am taking 50 Mg of Lyrica twice a day. I am leery of increasing my dosage since I am already taking several other medications. Thanks for the advice about HRT!

Happymom

Happymom: What Roxie says is true--you need a blood test. Have your FSH,LH, TSH-and most importantly your estradiol checked. If the latter is below 100 then you can really be helped by estrogen. There are alot of factors involved-but if you are a candidate for hrt it helps alot. I do believe it's helping me.I'm post-menopausal and need the hrt. I went into menopause at age 35. I'm 50 now!
*** I'm not sure about the gabapentin though. I have alot of good days-but today not so good. My bad days are no where near as bad as they used to be. Please keep us posted about Lyrica--I guess it works pretty fast? Gabapentin doesn't. How much Lyrica are you taking?
Debe2
:cat:

Roxie2007
05-22-2007, 03:10 PM
Debe2, I found that gabapentin (neurontin) didn't work for me either. The Lyrica does work...I take 50mg 3 times a day and 2 at bedtime. I'm going to ask my dr. about another medication that doesn't cause weight gain tho during my next appt. The last thing I need is weight gain! lol Roxie

deborah bush
06-04-2007, 09:43 AM
I want to know the girl that just had the MRI done and what results did she find out?

Deborah Bush:smile tee :cat:

happymom
06-04-2007, 06:05 PM
Deborah Bush,

I have a doctor's appointment on Monday, the 11th. I had to move it back a week because I already had two doctor's appointments today. I haven't forgotten about you!

Happymom:angel:




I want to know the girl that just had the MRI done and what results did she find out?

Deborah Bush:smile tee :cat:

kjd
06-07-2007, 12:20 AM
Hi Deborah Bush

Not sure who else had an mri scan but I had one too! I had one done 4 months ago in which I was told I had inflamation and irratation along the pudendal nerve. however they said they wanted to do another one just on my pelvis to see if they can see any damage.

Although seems a waste of time as dont think they can do anything to repair the nerve but its nice to actually know what is wrong and causing these horrible sensations dont you agree?

got my other one on july 29
xx

leelee88
06-07-2007, 02:03 AM
Hey all sorry I have abandoned you all, but I have not any clitoral pain in awhile well really sine I started the Cymbalta, I thought it was the Elavil helping it but when I had to get off of it due to so much weight gain, the clitoral pain never came back, now I do have it sometimes when I flare really bad with IC but nothing I cant handle..But you know Cymbalta was originally made for diabetics with severe nerve damage,but have also dicovered it helps with depression, it has help with both for me..Now if I can ever get this IC pain under control..Good luck to all of you and you all know can PM me at anytime:angel:

Ronda

deborah bush
06-07-2007, 08:07 AM
Hi KJD What area did they did your MRI on?

Deborah Bush:smile tee :cat:

deborah bush
06-11-2007, 06:52 AM
KJDWhere are you? I am just wonder where did you have your MRI done? I meant what location did you have the MRI done? I hope you are feeling okay!! Have a nice day!!

Deborah Bush:hi: :cat:

happymom
06-11-2007, 05:03 PM
Deborah Bush,

My MRI results were normal. My doctor diagnosed me with neuralgia. Lyrica is my only treatment at this time. I will keep you posted on any new developments

Happymom

sami4
06-11-2007, 06:02 PM
Just a note to say that one of the worst things anyone with crotch pain of any kind can do is ride a bike. The pressure can cause nerve damage, and in males does.
Sammi

kjd
06-12-2007, 03:10 AM
KJDWhere are you? I am just wonder where did you have your MRI done? I meant what location did you have the MRI done? I hope you are feeling okay!! Have a nice day!!

Deborah Bush:hi: :cat:

hey sorry ladies, I have not been well recently so not been on the internet as much! Had a smear test come back abnormal with pre cancerous cells and have to have surgery..but hey thats another storey!

I had my MRI done in England, in HULL as the HULL Royal Infirmary under Dr Ming! I had a full spinal scan and also lower pelvic area.xx

deborah bush
06-14-2007, 06:10 AM
Kjd, just found out I have to have to bx. done on my thyroid gland. My GYN doctor found a lump or what ever then I had a ultrstound done on my thyroid gland. I did not get in to see the surgeon till the last tue. of this month. Today is my Mother birthday and it will be 4 years this month since she has died. So I have bean really depreased.

Deborah Bush:cat:

Kara29
06-14-2007, 08:37 AM
Deborah,

Sorry to hear that you are down.

Kjd,

I hope that the surgery will be successful.

Well Wishes and Hugs to you both.:grouphug: :grouphug:

kjd
06-14-2007, 08:17 PM
Deborah

I am so sorry for you are going through...why is it that all these things seem to come at once for us?!
If its any consolation I am very down too and worried sick about my surgery and not really slept for days!!!

Well maybe we can cheer each other up!!!

I've also have more IC and clit pain but prob because I',m stressed out!!!

Kara

thanks for the hugs i needed them
xx

deborah bush
07-16-2007, 08:50 AM
How are you doing Deb2? They did not find anything on my MRI. I had 2 lesions injectied for bx. last Wed. and will see the the surgeon this Wed.

Deborah Bush:cat: :pray:

Debe2
07-16-2007, 09:37 AM
***Deborah:Hope everything works out ok for you! I have been doing very well. Only once in a while do I feel any discomfort anymore. I'm just about 100%. Don't know if it's the gabapentin, my new HRT, or just coincidense--but I'll take it! I do have to go in for an endoscopy next month because when I tried to go off nexium I got very ill. I'm on aciphex now and am feeling much better--but it took a long time. Endoscopy is just to make sure nothing is being missed, since I will be on meds long term.
Good Luck to all!
Debe2
:smile tee

Fluffy2
08-03-2007, 12:24 AM
It would kind of make sense that a sexologist would know more about the whole pelvic region, nerve pathways, problems etc because that is their complete focus. Anything that interferes with healthy sex is what they problem solve on a daily basis. My sis is the only clinical sexologist in our town and she has provided me with much better and more accurate info than any GP I've seen since this whole ordeal. The uro-gynocologist was obviously good as well, but in terms of strategies for living with this, she has been such a resource to me. She has several patients with varying degrees of IC, vulvodynia, PFD etc. I was very lucky to have her through it all.

happymom
08-03-2007, 10:55 AM
I had a mild case of prudendal neuralgia before starting physical therapy for IC. My first round of physical therapy involved a lisenced medical assisstant giving me a probe which was inserted in my vagina. This probe emitted an electrical current that was supposed to help with pelvic floor disfunction. Unfortunately, it severely irritated my prudendal nerve. Since then, I have had to take Lyrica for intense pain.
I would reccommend only having physical therapy with a liscensed physical therapist. Manual therapy seems much safer than electircal therpay for women suffering from prudendal neuralgia.

heavenly7
08-03-2007, 12:06 PM
Hi,
I see it's been awhile since anyone wrote on the thread. Anyway, I'm in an awful dilemma. I am on now 400mg of lyrica and fluoxetine(Prozac) 200mg lyrica in the am and 200 in the pm(along with vistril25mg and elavil 25mg) and I take elmiron and vitamins. My ob/gyn is knowlegable about vulvodynia and clitoral pain. He upped the lyrica from 300mg to 400mg.I was doing so well for 10 days then had some minor clit.throbbing. then I developed tingling over the weekend and monday had tingling in the clit. and then throbbing. I wanted to kill myself it was such a bad day then tues was great. Well yesterday was fine til around 7Pm and the throbbing came on. I tried the ice for almost 3 hours straight. Then I took my meds and then .5mg of ativan. I got to sleep at 5am and woke at 9am with the phone ringing. I am so tired and still have the throbbing. Every time I get the throbbing I always used a thin pointy piece of ice and kept it on the hood of the clit. Well it is very red and dr. says I shouldn't ice myself directly without anything on to protect it and try to stay away period. Well when I get the throbbing that's the only thing that makes it go away. I could never find the right spot. I wonder if I did anything to myself. Anyway, I can't stand to have it without stopping. I was wondering what anyone out there does to stop the throbbing. Please hel p me. I don't know where to turn as my dr. is on vacation til this coming Monday. :help:

kjd
08-19-2007, 09:34 PM
Hi

yes I have IBS aswell as the clit pain.....I never thought they would be connected.

I made the mistake of having sex for first time since my surgery and all was fine apart from its totally flared up my clit pain/throbbing.

does anyone find that stimulation flares up the clit pain? I sometimes which I never had sex...EVER

x

happymom
08-20-2007, 11:08 AM
Dear Kjd,

My husband can't even touch my clitoris without pain. "Creative" positions are the least painful (nothing touches the clitoris). I am in physical therapy for pelvic floor dysfunction and it has helped intercourse be less painful.

Happymom

deborah bush
08-20-2007, 12:37 PM
Hi! kjd

Did you get your results from your MRI of your pelvic? I hope you are doing okay.

Deborah Bush:cat: :hi:

kjd
08-21-2007, 02:02 AM
thanks guys. Well you see my clit sensations calmed down so I risked having sex and now the sensations/pain is coming back! This happens everytime....calms down again and then if I have sex its harrendous.

I only have sex bout every 6months and really upsets me....I just want to be bloody normal if you know what I meen??!!

Nope still waiting for my mri restults.

x

kjd
08-23-2007, 02:19 AM
having bad day today and want to go home!!! :mad:

been sat at work for 5 hours so far and not helping my clit pain

oh dear
x

Roxie2007
08-23-2007, 02:25 AM
HI KJD,
It sucks having to work in pain.......I know it well! I hope your work day goes by quickly so you can go home and rest.

icnmgrjill
08-30-2007, 11:23 AM
A Quick Note From Deb Bush

Deb had her biopsy done this week and she wanted to share that it was not cancerous though she did have half of her thyroid gland removed. She'll have the final path report in a couple of weeks. I'm sure she would appreciate some good healing wishes sent her way. It's been a tough summer for Deb!!

Jill :)

Debe2
08-31-2007, 09:39 AM
***Deb :
Please feel well soon! My heart is with you!!
Love,Debe2
:angel:

happymom
08-31-2007, 10:07 AM
My thoughts are with you today.:angel:

heavenly7
08-31-2007, 12:58 PM
My prayers go out to you.heavenly7:pray:

wantadiagnosis
09-02-2007, 10:00 AM
Please szee my new post.. I have the same thing.. tried lots of meds...

these creams from a new urogyn worked for me aftera week or two! And they aren't invasive or $$.

Good luck..
Kim..

deborah bush
09-05-2007, 10:14 AM
Thanks Debe2, happymom, and heavenly7 for your concern of my health. I just hald 1/2 of my thyroid gland out.

Deborah Bush:cat:

NicoleB
09-18-2007, 02:43 AM
i've read this thread before and wanted to cry for all of you, and i thanked my lucky stars that i didnt have this kind of pain.

BUT, 2 DAYS AGO, I GOT THE THROBBING PAIN (IN A VERY EMBARRASSING AREA TO TALK ABOUT) AND ITS DRIVING ME OVER THE EDGE!

seriously, I took so many meds yesterday trying to calm it. NOTHING worked. extra neurontin, extra tramadol, etc. NO releif. seriously, i'd take bladder burning over this hell. right now i feel like i'm being stabbed there. its kind of like being painfully aroused, but not in a good way. its obnoxious and i havent slept for 2 days. i dont know what to do. i missed work yesterday and i cant keep missing work because my clit hurts! can you imagine telling somebody that?!

I think it was triggered by PT, well...PT done by me. Basically i tried to mimic the massages that she does for pudendal neuralgia, and i think i hit the nerve. because right after my do-it-yourself massage (right where the pudendal nerve comes up through the muscles) i got this pain. i'm hoping it will calm down, because seriously, this is not something i can live with. i'm at wits end.

kjd
09-18-2007, 03:03 AM
Nicola B......I know exactly what are you are going!!! As you know I have been there and gone through the sleepless nights sitting up thinking "what the hell is going on with my clit"!!!

yes the way you describe it "painfully aroused" is also how I would describe it!! Horrible strange sensation which drives me insane!!!

I also get it worse after sex/or any type of massaging "down ther" and my doctor said that it stimulates the nerves which makes the pain/throbbing sensations appear worse!

Eventually it calms down...trust me it does! I'm not saying it completely goes for me but now I am taking my meds etc I can hardly tell its there....untill I end up getting aroused again then I'm back to square one.

Now first thing you need to do is speak with your doctor (an understanding one) who will offer you various meds which are for this type of pain and it will help!!! I take Elavil and gabapentin together and its amazing how well it works.

ARe you taking either of these? you will typically need a less dose than you would usually need for IC.x

NicoleB
09-18-2007, 03:13 AM
elavil made me gain 15 pounds quickly, and then the neurontin made me gain another 5 pounds, so a total of 20 pounds since i started my meds months ago :( and i have being dieting too! Its too bad because elavil did work pretty well. Neurontin worked less, but i'm still on a small dose. whenever i increase the dose, i bloat up and gain weight. I already have a slow metabolism and i cant make it worse! especially becase the meds made me gain without even eating more, so i know its messing with my metabolism.

i only had this new pain for a couple of days, i'm hoping it will calm down because its horrible!

i want to try lyrica but since i tend to gain weight on these drugs, and lyrica is a big weight gainer supposedly.

i know it seems vain, but if i gain weight, my already horrible depression will get worse. I've always had depression and self esteem issues with my looks and i cant risk being more depressed than i am. Depression is almost a worse torture than this physical pain! i'd only take a weight gaining drug if it CURED the condition.

thanks for the suggestions. i think i need to see a pain specialist.

Bessie
09-18-2007, 04:34 AM
Deb Bush,
So thankful that you do not have thyroid cancer. Hope you have a smooth and pain free recovery.

happymom
09-19-2007, 08:40 AM
Nicole B,

I am so sorry to hear about your new pain. I tried Lyrica and then switched to Neurontin due to stomach trouble. Neurontin works much better for me.
I am currently going to physical therapy to treat this pain. My physical therapist has a theory that my prudendal nerve is irritated around the area of my hips. Is this where the "prudendal nerve comes through the muscle" or are you talking about a different location. My nerve pain has been more manageable after a few treatments in which my therapist focused on the hip area.
I have also felt much better after seeing a pain specialist. I highly reccommend it. Hugs!

Happymom

Nirvana
09-20-2007, 04:07 AM
Hello to all of you.
I have read all twelve pages of posts in this thread over the past few hours and they all sound so familiar. We are a desperate lot, IC sufferers, and we fall prey to all sorts of hopeful sounding cures, no matter how unlikely they sound. The earliest symptoms I remember came when I was about 8-years-old. I had surgery to remove an ovarian cyst in 1967 and I was catheterized. That's when my bladder problems started in earnest. I only really had symptoms during a flare up at that point. Sometimes I would be driving and all of a sudden the pain, urgency and frequency would become so bad I was sure my head would blow off. I would stop, go to the restroom, get back on the freeway, 5 minutes later it would be back, just as intense as before. I was diagnosed, finally, in 1994 at UCSD hospital by C. Lowell Parsons. I could not wear jeans or anything tight over my abdomen or tight in the crotch. Parsons instructed me to catheterize myself every morning and inject bacteriostatic water and heparin. I did this for two years and then stopped 'cause the catheter hurt going in more than I can say. Any touching in the clitoral/urethra area is going to cause pain and many of you are describing going through things that could very well make your symptoms worse. The pudendal nerve is nothing I know much about ... except that it is located in the pudenda. I am skeptical to tell you the truth. For the most part it sounds like drs on a witch hunt because they have no idea what to do or how to treat IC. Many drs., urologists, family doctors, ob-gyn, etc., would rather be shot at sunrise than have to try to treat an IC patient. I have read only vague references to diet in this thread. I was the most pain free when I ate mostly broccolli (sp?), chicken and brown rice and drank nothing but water. Most foods are IC triggers. All acidic foods (some foods start out as alkaline and turn acidic by the time they reach your bladder) will hurt you, sugar will hurt you, either refined, raw, or natural sugars in excess. Therefore, alcohol will hurt you. Fruit will hurt you except for pears and blueberries. Chocolate and tomatoes and tomato paste/sauce. And on and on. Check out ******* website, ***** ******* is the acupunturist who has studied IC patients for 10 years. Her diet is restrictive, but hurts the least. The real trick is staying on it and not dying from boredom. SHE started me on herbal combination for two weeks that included omega 3's, golden seal and one more that I don't remember at the moment. I will check and get back to anyone who wants to know. If I had stuck with the diet and the herbs, I may have done better than I have, but maybe not. Different things work for different people. Like I said, all of us are desperate. Still looking for that magic bullet. Sex is very painful ... I think saliva is particularly irritating. When I first reported intense pain in clitoris/urethra, my fam doc said I must have urethral herpes. Thanks doc. Herpes attacks nerves and nervous system. It is not herpes, it is an IC flare. I'm gonna' go out on a limb here and say that it has nothing to do with the clitoris at all, but instead is horrific pain in the urethra. IC affects all ... bladder, urethra, plus sympathetic pain in back, thighs, hips, abdomen and on and on. It is a debilitating, depressing, disease. My husband encountered a urologist in the hot tub at the resort where our sailboat is slipped about two months ago - she was in town for a convention of urologists - he mentioned his wife had IC. Her reply, "tell her not to give up yet." Ah yes, if not yet, then when? Seriously, lots of research being done now, but not nearly enough. We now know kids can get it. Lots of men have it although many more women.

How many of you have tried keeping a food diary? It will help you figure out what triggers flares. Sex most always causes flares unless it is so gentle that it hardly makes an impression at all. Every time my husband and I have passionate sex, I tell him I am going to pay for this and so are you. Flare ups cause irrational and fierce pain, irrational and unpredictable behavior as you try to cope an no one understands. 5% lidocaine, right into the tip of the urethra will numb (after horrible burn) for a while and give me some relief, often enough to let me go to sleep. I regularly take 20 to 40 miligrams of oxycontin every twelve hours, 350 miligrams of soma at bedtime to help me sleep, 50 mgs of atarax (hydroxizine) at bedtime, wellbutrin for depression. Have been taking Gabapentin for about two years, but I am considering weaning off the drug. It never helped my IC pain, but I thought it helped my back pain. Now I think it only makes me gain weight and gives me suicidal thoughts. Read more about the gabapentin lawsuit and bad effects of the drug to make up your own mind. I will be turning 60 next month, so I will have had this disease for 52 years give or take. Elmiron was no help. I am going to try msm gel after reading this thread, also freeze dried aloe vera. IC causes inflammation of the bladder, congestion of the bladder and abdominal cavity. When sinuses drain, it can help. Warm bag filled with barley or corn or whatever placed on abdomen will help to draw congestion/inflammation if you stand the weight of the thing. Sometimes yes, sometimes no. This helps with migraines too if you place it over your face. Please, please, please, no more ice. Ice only aggravates the pain and as soon as you take away the ice the pain returns with a vengeance. Warmth brings healing to area by increasing blood flow. Although, periods can cause worse IC symptoms. It may be that I am wrong about the clitoral thing, but I have lived with it for a long, long, long time. I have been on a flare up for about 24 hours now, so I am going to put this down and try to get some sleep using lidocaine. Opiates help, but they do not always work. Flare ups are on the ceiling kind of pain. I always say it takes some time and drugs to come down off the ceiling and get the pain settled down to almost bearable. Sleep is great, no pain when I am asleep. Depression, lack of energy, having a job is difficult. I could not live with the pain all day everyday and my dr. gave me mscontin and then oxycontin. Soma relaxes the pelvic muscles. Anything that will knock you out, especially around bedtime, is a good thing. Used to take vicodin, but too ineffective and too much acetominiphen (tylenol). I expect to wake up later to you all telling me I am nuts, but I had to share my story. I have good support from my husband, but he gets frustrated and loses patience sometimes. My fam. doc is good now. He pretty much lets me control the pain, etc., within reason. Have been taking 20 mgs of oxycontin for about two years. Sometimes, when pain is horrible, I take 40 mgs. I have found that 20 mgs. time release often does not last twelve hours, that's why I have him prescribe two 20 mg. every twelve hours. When flare ups occur, it helps, but no amount of it will dull the pain for more than a few minutes, sometimes 30 minutes if I am lucky.

I love my sailboat. It is the only hope for me now. I forget about my IC while I am out on the water with the wind in my hair. Now if I could just get that sensation all the time. I can, it's called cruising, which we are planning. Could be after awhile even that won't work, but I don't want to think of that now. Love to all of you.
Dorothy

Nirvana
09-20-2007, 04:12 AM
Hm, site won't let me post anything from a different site I guess. I don't know, but the url for acupunturist in la who has studied IC patients is *******.com. If this doesn't show up I will try to find a different way. Google IC and acupuncture, maybe it will come up. Shoot, no good, I can't get website address to you. ******* is name.

SandyRN
09-20-2007, 11:13 AM
Donna has kindly re-opened this thread because I know it is a comfort to all of you that post here. If there are any problems please let Donna, Jill, me or any of the moderators that there is a problem here.

Thanks Donna! :)

Debe2
09-20-2007, 11:29 AM
Nirvana: I'm sorry to hear how much you are suffering and for such a long time! I just want to say that clitoral pain can be a totally separate issue from IC. It can make you feel the need to urinate frequently and urgently--but it is not the urethra causing it. I'm not saying it can't be the case--but for me it is not. I don't have IC. When I have the pain it is in the clitoral area and inner lips only--for sure! Vulvodynia can be a part of IC--or a whole separate issue. Luckily for me I have been pretty much pain free for a few months now. Either the gabapentin is working-or it 's getting better on it's own. I'm not willing to go off the meds yet to find out--not after I was hurting for so long. I have read everything about the drug and I feel it is quite safe. I would rather be drug free--but there you go.
***As for the IbS and Tip thing--I just thought the person was off on some strange rant and so I ignored these posts. I doubt the posts were meant to offend--I just thought they made no sense and had little to do with our problem.
Debe2
PS Does anynoe know what the rating on these threads mean??? I asked before but got no response.

SandyRN
09-20-2007, 11:35 AM
Hm, site won't let me post anything from a different site I guess. I don't know, but the url for acupunturist in la who has studied IC patients is *******.com. If this doesn't show up I will try to find a different way. Google IC and acupuncture, maybe it will come up. Shoot, no good, I can't get website address to you. ******* is name.


First of all :welcome: to the board! We're glad you're here. I'm sorry you've suffered for so long! You seem to have a great attitude though and just hearing about your sailing trips makes you my hero! :)

The reason you can't post url's or doctor's names is because it's not allowed here as sometimes it's seen as advertising. It looks as if the system did it this time and since I've not been around much the past few days I'm thinking the system was upgraded to stop websites from showing up automatically.

Sandy

SandyRN
09-20-2007, 11:38 AM
***Pss I didn't know this thread was closed....was a post by IBS and Tip deleted? Maybe I missed something and that is why the thread was closed????
Debe2
:bunny:

There were just some questionable posts here but that's in the past now and I'm just happy you guys have your thread back. You guys seem to have become very close here!! Lets move on. :)

Sally939
09-20-2007, 11:43 AM
How common is it to have this problem with IC?

leelee88
09-20-2007, 01:21 PM
Thanks very much for reopening this thread..

This is a very important thread to people who suffer with this problem, It is real and very disturbing feeling to have to suffer.. To me it has to be worse than having a broken leg or arm or any pain like that.. Its a constant throbbing arousal feeling with a wierd pain it is so disturbing it plays tricks on your mind.. People who have this can truly relate, when it is constant it makes you just want to go to sleep and never wake up..

So thanks for keeping this open, because the people here understand what I am talking about and we need each others support just like people with the IC pain, which I believe is a part of this..
Take care all:angel:

leelee88
09-20-2007, 01:27 PM
Nirvana,

I know how you feel, i had to stop riding my motorcycle dur to this sensation feeling.. My URO tryied me on Elavil and it stopped it, but caused alot of weight gain.. So I stopped it and the feeling came back. I was about to go nuts.. The URO since has started me on tofranil and I am so happy to report that the feeling has eased again.. Now I do have the feeling when I flare but not as bad since the tofranil...:angel:

Julie B
09-20-2007, 06:13 PM
I would say at least half of the IC patient I see ask me about this. Look at the length of this thread.....that tells you something right there that this is an incredibly common issue.

Has anyone tried warm baths with Epsom salts? That helps my IC a lot........I don't have the other issue though........Just thought I would throw it out there........

Hugs to all of you...............sometimes this all just stinks.........

deborah bush
09-26-2007, 09:51 AM
Hi Deb2 I have appt. with Dr. Brookoff on 18th. of Oct. I hope he can help me out. My pain has has gotten worse after my thyroid surgery. So I called the doctor office to have them ask him about it.

Deborah Bush:cat:

Debe2
09-26-2007, 11:21 AM
***I'm sorry to hear that you are still having problems. Did the Dr think the thyroid surgery was going to cure your vaginal pain? I'm in a flare myself right now. I have given up trying to figure out why it comes and goes like this. It's very hard to stay positive!
Hugs-
Debe2
:angel:

deborah bush
09-27-2007, 08:18 AM
Hi Deb2 How are you doing? I will not have a answer from the doctor until next Wed. Hi broken smile How are you feeling these days?

Deborah Bush:cat:

BBB
09-27-2007, 08:47 AM
Hey Deborah,
Dr. Brookoff is my doctor too! I am sorry you have to wait, as I know he is going to be out of the office for a little while. He help me so much with this type of pain and it was so easy to talk to him.

I use a IF 3 Wave external stimulator and massage. That of course is along with my pain meds. Also, I find that very loose clothing help.

Hope this helps. Have you seen Dr. Brookoff before? I wondered since it looks like you live out of state (Colorado)?
Betsy

deborah bush
09-28-2007, 07:54 AM
Besty where do you leave in CO? I saw Dr. Brookoof at a meeting at a ICA meeting in MD. I have talked with him on the phone and my pain doctor has worked with him. I have tried couple things that he has recommend.

Deborah Bush:hi: :cat:

BBB
09-28-2007, 08:42 AM
Deborah,
I live in Grand Junction which is on the western slope of Colorado, about 200 miles from Denver. Although it is a three hour drive over the Rocky Mtns., I travel to Denver for work often.

So you have met Dr. Brookoff. That is so cool. I would travel to the end of the earth to see him! I have been a patient for a little over a year and he has literal changed my life. Although I have been known to be dramatic, he really is great. He is so smart, funny and down to earth but most of all validating!

Pain is a big sympton for me and I had been to several doctors. I found him on this website so I called and got in. The only draw back is plan to spend hours at his office. Is your appointment early in the day? He tends to get behind because he is so caring with each patient. His support staff is excellent. I could go on and on about all the things he has done for me.

Please let me know how your appointment goes. Are you flying in for the day? Tell him I said Hi!
Betsy

tuazmom
09-29-2007, 12:42 PM
Hi all,

Glad you all are here to talk to each other. When I first had clitoral pain and thought I would go out of my mind, it helped so much to know I wasn't alone.

Dr. Brookhoff will be speaking in Phoenix I believe on Oct. 13 - it's a Saturday. Can't wait to hear him speak, especially about clitoral nerve pain.

I'll let you know what he says.

Marsha

BBB
09-30-2007, 06:18 AM
Marsha,
That is so great to are going to his talk. Dr. Brookoff told me about it and said I should go. I was in a lot of pain that day and wasn't really listening to him.

Where is it being held at. Can you give me more info so I don't have to call him and ask (and admit I wasn't paying attention, lol). I think I will go.

Thx,
Betsy

tuazmom
09-30-2007, 07:01 AM
Okay, here's the link I was notified with. It costs $25 to attend.

The ICA Regional Forum in Arizona will be held on October 13, 2007, 1 to 5 pm. The guest speaker will be Daniel Brookoff, M.D. In order to register for this event, please go to the I.C.A. web page and you can learn all about the event and register on-line. The site is http://www.ichelp.org

Cheaper than a ticket to Colorado!

BBB
09-30-2007, 07:48 AM
Thank you so much for the info. I might see you there!

Debe2
09-30-2007, 04:05 PM
***I live in Phoenix and my husband works in Tempe. I never heard of Dr. Brookoff before. I looked up the link you listed-it looks like his main interest is IC rather than vulvodynia. How do you know he will speak about clitoral pain? If he will do so I am interested in signing up ( I don't have IC ).
***A few people here have said he has helped them--could you share his ideas? Does he use any special drugs that help? I'm in a flare and I'm sick of it. I need some help!
Thanks-
Debe2
:pray:

BBB
10-01-2007, 05:17 AM
Debe2~
Dr. Brookoff is a Pain Management Specialist therefore he deals with all types of pain. He is an Internist by specialty and was orginally an Oncologist. He has both a M.D. and P.H.D. Needless to say he know a lot about the human body.

Vulvodynia is almost always present with PFD and often present with IC. He is an expert in the Pelvic area. That is why he will talk about it. I can't speak for him, however he usually makes himself available after the talk. He told me "the Pheonix speaking engagement is going to be a good one, you should go".

You have to meet him to beleive it. His is an amazing human and funny.... He looks at medicine as an art more so then science. Therefore his treatments are specialized to each individual.

In my case he treated my pain first through pain meds. Pain is like a car alarm. Can't hear much else until it is quieted. Then he listens...he actually listens to you and doesn't judge! It is interesting you say it sounds like he is mainly into IC. His hands were tied and he wasn't able to treat my IC when I first went to him because I was in the BION study and not able to take any meds for the IC with the exception of treating pain. Therefore we really dug into the Vulv and PFD.

Anyway...For $25 what do you have to loose? And you will be able to network with people who are similar to you. Each time I visit him I meet interesting people in his waiting room.

One last thing...find his articles posted to this site or Google him.

Good Luck,
Betsy

P.S. Have you tried the Low Oxyolate Diet?

deborah bush
10-01-2007, 09:24 AM
Betsy I am flying in on Wed and going home on Friday. I will see Dr. Brookoff on Thru. at 8AM. Betsy how long did he spend with you when you had your first appt?

Deb2 How are you doing? You said in your post that your pain is bad. I hope you are feeling better!!!!:pray:

Deborah Bush:hi: :cat:

BBB
10-01-2007, 12:13 PM
Deborah,
I am so glad your appointment is at 8:00. He spent 2 hours with me during my first appointment. He will spend however long you need that is why it is good to get the first appointment of the day. Dana is his Physician's Asst. and she is awesome. Val is his nurse asst. and is great too!

I am so excited for you to go see him. Don't be afraid to tell him what has worked or not worked for you in the past as far as pain meds. It scares some Docs when the patients ask for something specific, however he is not one of them. I don't recall, but I think you stated you have pain with sex? If so ask him about the intervaginal valium. He will crack you up! Your pain will never be the same. Thank goodness.

Please let me know how it goes.
Betsy

deborah bush
10-02-2007, 05:39 AM
Betsy I do not have sex. Do you take Valium sup.? What does it do for you? I have done some cream that he had recommend with my Pain doctor hear but it did not help.

Deborah Bush:cat:

BBB
10-02-2007, 06:02 AM
Deborah~
I'm sorry about the sex issue!! I hope I didn't offend you. Tell me if this is too personal, please. Is it because of pain or other reasons. Please tell me MYOB if needed. I just hate hearing people loosing that area of intimanticy because of pain. I lost that with my husband and felt hopeless until the valium supp.

The valium helps mellow all of my pelvic floor muscles and takes the edge off of the tenderness and the abbrasive feeling in the area outside my vag. I take it even if I am not planning on having sex if my muscle are not cooperating.

The nice thing is it doesn't make me feel "whacked out" because it doesn't go into my blood stream like taking it orally. It makes the Valium act more as a antispasmatic instead of an anti-anxiety med.
Again, my apologies for assuming,
Betsy

I would like to tell you more about myself and meds but I am still trying to figure out the signature thing. I am having problems thinking this week because I am in a hugh flair!

deborah bush
10-02-2007, 06:25 AM
Betsy my e-mail address is deborahbush1952@yahoo.com

Deborah Bush:cat:

BBB
10-02-2007, 07:02 AM
Thanks Deborah. I am going to email you shortly to follow up on this thread.
Betsy:)

deborah bush
10-04-2007, 08:58 AM
Betsy How are you doing today. My pain has been a 7 today. I can not wait to see Dr. Brookoff.

Deborah Bush:cat: :hi:

BBB
10-04-2007, 09:48 AM
Deborah~
I am so sorry to hear you are at a 7!! Hang in there, only a little bit longer until you go see the Doc. That is so awesome that you are traveling so far to see him. You are really committed and I am proud of you!
Take Care,
Betsy

deborah bush
10-05-2007, 10:11 AM
Hi! Deb2 How are you doing with your pain? I hope you are feeling better!! Betsy, I try to call you this PM!!

Deborah Bush:hi: :cat:

Debe2
10-19-2007, 10:59 AM
***I was wondering how the talk went with DR. Brookoff on Oct 13? Did he recommend any meds that help with vulvodynia? I was unable to attend. My discomfort is getting bad again. I went for about 3 months doing well and foolishly thought my troubles were over. But no way. It's back in force. I am trying not to up my dose of gabapentin--but I may have to. Suddenly my dose is not working. I dread running back to the Dr and trying yet more medications! I hate it all and I'm losing hope.
Debe2
:help:

leelee88
10-19-2007, 11:42 AM
Debe2,
I am so sorry to hear this.
I know this feeling is torture. My URO started me on Tofranil since I could not take Elavil anymore and I am so happy to report it is working very well with the sensation feeling it the clitorial area.. It still bothers me when I flare but its tolerable now.
I hope you find what works for you because I know this feeling and it will drive you mad:loco: ..Im here for you if you need me..(((((hugs)))))

tuazmom
10-19-2007, 05:08 PM
The meeting in Phoenix was very good. He is a knowledgeable Dr. and sympathic too. A hard combination to find. Above all, he kept saying that if what you are doing is not working, keep on looking until you find something that will, because you owe it to yourself and your loved ones to be better. He believes in using a variety of drugs, whatever works.

He takes a lot of time with his patients and treats them as individuals, listening to our individual stories, because they are all somewhat different.

Along with the usual stuff tried for IC, he recommended anti-seizure meds, along with Valium. He said Valium reacts on the pelvic floor muscles and he's really seen people get better on it.

He said there were new drugs coming out soon that he thought would be beneficial to us and also a new "interstim" devise. Don't know much about the details, but I was interested in finding out more about it.

We could have kept him there all night. It was good to see it well attended.
I would definately go see him if at all possible.

Marsha

DoulaSue
10-22-2007, 08:19 AM
Hi, I'm hoping someone can help, or just give me a shoulder to cry on. Here's my background info:

Last year, around this time, my clitoris started to feel incredibly painful, like there was a large papercut or something. I wasn't sure if it was my clitoris, or my urethral opening, but it felt as though my clitoris was hypersensitive, not painful all the time, but almost swollen. Woke up 3 days later, and had very bloody urine, thought I had a severe UTI, took the standard antibiotic treatment. Didn't feel better, went back to gyno who took the 1st urine sample, only to find there was NO infection present at all. I continued to show blood in my urine (although it was only visible for that first day). Joined this site, as I was certain that it had something to do with IC. Went to a urologist in town who specializes in IC. He gave me Enablex, which didn't help much, and scheduled the procedure where he looked in my bladder with the scope. I was diagnosed with "mild IC". AMAZINGLY, 5 minutes after he did the procedure, and flushed the bladder a little bit, the pain COMPLETELY disappeared, and hasn't been back in 10 months. I felt absolutely FINE.

Fast forward to now. I started feeling the clitoral pain again, like a papercut (when touched), or a general feeling of arousal even, it feels like it you were to rub it, or apply pressure, the feeling would be relieved, does that make sense? No symptoms of a UTI, no pain when urinating, etc... I do feel "twinges", and not sure if it's my clitoris, or again, my urethral opening. I am able to have pleasurable sex with hubby, and orgasm, but the twinges and "uncomfortableness" are worse right after orgasm. It's been a week now, and my symptoms feel JUST like they did 1 year ago when this all started. I'm so scared that this is the beginning of a flare up! The uncomfortable clitoral feeling makes me feel like I have to pee all the time, but there is no pain with urination, no burning around the area, just a hypersensitivity.

Should I call the Uro? I want him to do the bladder wash again! It really seemed like the stretching of the urethral opening with the procedure made the pain go away.

I'm still not 100% convinced that I have IC, as I've felt perfectly fine for the past 10 months. I have been under alot of stress this past month, as we are opening a new business. We've also been having quite a bit of sex lately, with alot of clitoral stimulation. I would be more convinced that this had something to do with the clitoris, and NOT IC, if there wasn't the bloody urine last time this happened. :help:

DoulaSue
10-22-2007, 08:41 AM
Oh! I also wanted to mention that I think I may have a slight yeast infection. I also had a yeast infection the first time this happened. When I went in to give the gyno a urine sample, she also diagnosed me with a yeast infection. However, the yeast infection cleared up after the meds, but I still had the clitoral sensations for weeks afterward.

This is really starting to put me in a bad mood. :mad:

leelee88
10-22-2007, 08:45 AM
DoulaSue,
I am sorry you are having this awful feeling, trust me I know how you feel.
I would suggest you go see a Dr about this.
Also what you are feeling could be VV or related nerve damaged. I have been doing some research about clitorial stimulation and do know that to much stimulation can cause some nerve damaged. But also having IC will also bring this sensation on. So there could be a few things going on here. Please talk to your Dr about this because there are meds out there that can help.Good luck and please keep me imformed.. I will be glad to try to help in anyway.

DoulaSue
10-22-2007, 09:09 AM
Nerve damage??? Ugh. You know, it seems that both this flare and the last one coincided with a time of frequent sex with hubby, almost daily. But, that's not that unusual for us, either. If there was nerve damage, then I wonder why it would be so uncomfortable last year, then totally clear up for months and months. If the nerves were damaged, would that ever go away?

I don't want my nerves to be damaged. :( I'm researching Pelvic Floor dysfunction, too. I do find that I sometimes "tense" my pelvic floor muscles without even knowing I'm doing it. If I tell myself "relax the pelvic floor", I can tell that I was actually tensing it up, for some reason. I pushed for 3 1/2 hours with my daughter, I should have listened to my midwife who told me to do 500 kegals every day!

I'm going to give it a few more days and see how I feel. At this point, I'm not sure if I should call my gyno or my urologist. Hubby is out of town for 4 days, so I'll see if the lack of sexual stimulation "calms it down". It doesn't seem like that is going to happen, though.

Thank you for your support, it's weird how all of this is tied in together, and you guys are a wealth of information.

I still think the Uro diagnosed me with "mild IC" because he didn't really see that much that pointed directly to a severe case, or even a flare up, but may have just diagnosed me because my symptoms fit. Do you think that could happen? The blood showing up in my urine would also point him in that direction.

I had the flu about 6 months ago, went to my regular Dr., they did a urine culture and sure enough, there was blood, but I had absolutely no symptoms of IC at the time.

I'm so confused, vulvadynia, pelvic floor dsyfunction, IC, it could be any number of things, and I just want this feeling to STOP. It's driving me nuts! It doesn't actually hurt, it's just a pressure/tingly/arousal type sensation. Grrrr.

leelee88
10-22-2007, 09:55 AM
I promise I cant relate TOTALLY.. It about drove me nuts and it seemed when I would apply pressure you know like holding myself it would ease a bit.
The URO kept insisting it was a part of IC. And it was a form of pain. Which pain meds do seem to help a little with the throbbing feeling. When I first started getting that feeling it didnt just come on all at once either. I would have the feeling for a day or two then maybe wouldnt feel it for weeks or months and then when I had kidney stones and my IC Dx The feeling would not go away. What causes the feeling? I truly do not know, VV, pelvic floor, IC.. Nerve Damage?
But what I do know is that many woman get relief from meds like Elavil, or Tofranil. I know they gave me my sanity back. Also lidocaine Gel and and Ice pack can be helpful if it gets to bad.

Your right it feels like an aroused sort of feeling. I had to quit having sex all together mine got so bad and tender I didnt even want to be touched.
If you need anything else please ask. I will try to help as much as possible. Also heres a good link on VV..If your interested

http://www.obgyn.net/women/women.asp?page=/CPP/articles/Cracchiolo_0499

Debe2
10-23-2007, 09:26 AM
***As I have said before my discomfort has also returned. Now the feeling is more like burning in the clitoral and lips area. I can tell it is really a vibration I'm feeling. Would a vibration be nerves or muscle related? Any ideas? I have had to give up sex as well. Had it about 6 times this year. My husband is not happy but I just can't take it! I'm wondering if I need to up my gabapentin--I have been on 900mg for about 7 mos and it WAS helping--not now. I hate to return to the Dr and I hate to try yet another medication. It is very very upsetting.
Debe2

deborah bush
10-24-2007, 05:09 AM
Hi girls!! I was in Denver, CO last week and I saw Dr. Brookoff. He spent with me about 3 to 4 hours. He tried a nerve stimalter that goes out side but we did not get it to where my pain was. But he found where my pain was located. He was I great doctor to see. I will get back with you all later about my visit with him.

Deborah Bush:hi: :cat:

Joanie
10-25-2007, 03:37 AM
I'm not sure I'm glad I found this thread.

I 'm so new to this site and IC that I have a hard time navigating. I try to respond to my private messages, but, I can't always locate things here.

I too have started having this constant feeling of discomfort. I'm can't describe it properly to the uro. I went to see him Tues. after thinking I had a UTI the week before and starting on Cipro agian for 3 days. No relief, and after a 3 hr car ride, this pain just won't stop. I told him the pain seems to be all vaginal and not in the bladder. He said vagina sits below the bladder and this is what is causing this. He wants me to start on Elmiron, but I am trying natural for now.

But, as you all say, I just want it to stop for awhile. It's 24/7. I get so scared when I read all of your posts and I try to talk to myself and say it will get better. I have had about 10 good days since being diagnosed in July. Now it seems to be going in the wrong direction again. I thought it was because I wasn't careful on the diet, after starting to feel better. Now I am afraid it will never get better. I am on Aloe Vera and Cystoprotek, (Aloe for 6 weeks, cysto for 3) and hoping this will do the trick. But after reading these posts, I am not so sure my problem is just the bladder.

No sex since dx. just some clitoral stimulation,(when I thought I was feeling a bit better) so now I am thinking this may be what caused this to get worse. I feel so bad for my husband too, but he NEVER complains and feels so bad for me too.

I feel so bad too, that I am never able to give advice to anyone, just always asking for help.

Joanie

leelee88
10-25-2007, 06:48 AM
Joanie,
Have you been checked for a UTI?..

I would rule that out first. And then if that comes up neg, I would go and talked to your Dr about the sensation you are having.

While alot of people who have IC do have this feeling. I can not say if it is directly associated with IC or not. But I do no it is very annoying and even painful at times. I hope you find something that helps. If you need anything or need to talk about this please let me know. And I will try to help and answer your questions as best as possible..

Joanie
10-25-2007, 09:25 AM
hI leelee,
I went to uro on Tues. No UTI and he said the vagina is at the end of the bladder and that is why I feel this way. I'm not sure all uros know ALL the problems that seem to be involved with IC. I actually asked him if I could apply aloe (from the plant) to my vagina to relieve this feeling. He said he never heard of it but it wouldn't hurt. Unfortunately, it burns, so I won't do that again. I think I will try the MSM gel that I see others writing about. I truly don't believe the pain is in my bladder, but I guess spasms from the bladder could cause this sensation. I am worse when sitting. I am also going to try an epsom salt bath. I am so afraid of making it worse. Thanks so much for writing. I am also trying to learn how to navigate and answer on this site. I'm a bit overwhelmed by it.(not too comptuter savvy)

Joanie

leelee88
10-25-2007, 04:04 PM
Joanie,
I will try to help with any questions about navgating here on the boards.

Also if you are having the same sensation that I have and others have described it could be a nerve problem.. I know all this is so confusing.

deborah bush
10-26-2007, 06:11 AM
Hi Joanie & Deb2 I just went to Dr. Brookoff and he told me that my pain was inside my vagina. I told him before he hald examine me that my pain was in my clitoral all the time. My Pain was on the right side of my vagina and he told me that I had nerve damage.

Good luck into funding some help and I hope you feel better. Deb2 I hope you feel better to.

Deborah Bush:hi: :cat:

Joanie
10-26-2007, 10:03 AM
LEELEE.
what do they do for nerve damage?
also, when I see a response in my mailbox and it says goto newpost and has a number, I can't always find the posts. I guess I am not looking inthe right places. thanks for your help

deborah bush,
i am a bit confused by your post. he told you your pain was in vagina? where did you tell him it was? clitorus and he said it wasn't? what can be done for the nerve damage? can it get better and what causes it?

Thanks,
Joanie

leelee88
10-26-2007, 10:17 AM
Joanie,
You really need to talk to your dr about this, but what has helped my sensation feeling the most is Tofranil..

Joanie
10-26-2007, 10:28 AM
Thanks leelee,
what is tofranil?
I did talk to my dr. and he said sensation is from the bladder, but maybe I don't explain myself enough to him. I go back to him in a few weeks, so I will see if this subsides and if not, I'll see what he says agian.

Joanie

leelee88
10-26-2007, 11:04 AM
Yes that is what my old URO first said it was the bladder causing this. But I was having this feeling before I was Dx with IC or having bladder pain, so I refused to believe this. But that is just my opinion..
Well, and my new URO seems to believe that it is nerve related, because I am responding very well to the Tofranil..

Tofranil is an tricyclic antidepressants. It is often used to help with nerve pain.

sweetpeahiker
10-26-2007, 03:17 PM
Hi, Debe2. I think this may help...take a nice long bath in 1 cup of Epsom salts and a handful of pure sea salt. It is very healing. I know the pain you are feeling, and when I start feeling anything like it, this is what I do. Sometimes I also put a few drops of peppermint oil in the water as it is soothing, but refreshing for all over the body...not to mention it helps with relaxing the body, too.

I hope this helps and please take care.

--Cheryl--

leelee88
10-29-2007, 08:15 AM
Just a hint of caution, adding anything to your bath might irritate your symptoms if you suffer also with Vulvodynia..:angel:

sweetpeahiker
10-29-2007, 09:03 AM
Correct, you might be better off just sticking with the salts and skip any oils if you have vulvodynia.

The salts though are very healing. This bath also detoxifies you as the water cools off. It's best to try it for only 20 minutes at first depending on how toxic you are. Some weeks I feel worse than others and I'll do a 20 minute bath 3-4 times in that week. It helps tremendously.

--Cheryl--

navemj
11-03-2007, 04:16 AM
Yes,
I have had all the same symptoms. It is terrible pain. Way worse than the IC pain to me. I had to have physical therapy done for pelvic floor dysfunction. I also took Elavil and went on birth control non stop. I had a period last week and now I am hurting some. I think it has alot to do with hormones. The physical therapy really helped. There is a link on this web site with physical therapist that work with pelvic floor dysfunction. I also had estrace compounded with elmiron to put on the area. There are tons of side effects to estrace so it is always good to research before you make any decisions. I was at the end of my rope and willing to try anything. During physical therapy she done myofacial release ( I think that is what it is called). I think it helped calm down all the muscles around the urethra which causes the clit pain. I hope you feel better soon.
Mayrann

Joanie
11-04-2007, 03:57 AM
I am thinking of trying to find someone to dx if I have PFD too, since I feel that this could be what is causing me more pain than the IC. I am also going to ask my uro. about it (not sure if he believes it either) but also going to ask him about pain med. (not the darvoset, hydracodone already prescribed). I read on Dr. Moltrin's site that he prescribes valium, 2mg. 3xday. He says it's not addictive (but I.m not sure about that). Is the elavil addictive? I really believe that I need to stop the cycle of pain. Perhaps the massage treatment will help. I am also taking 2 sitzbaths a day, as he suggested. I haven't added anything to the water though. I'll buy some epsom salts today. Thanks again to all for the tips.

leelee88
11-04-2007, 04:04 AM
Joanie,

You should ask your Dr about this but with my exp with Elavil it is not addictive. And it really helped to control that sensation feeling. I had to quit Elavil due to weight gain, but started Tofranil and it has been helping with no side effects. I am not on any pain meds for this because the Tofranil seems to fo the trick.. Hope you can get some relief soon.. I know the feeling and its not plesant at all..Oh and if you can get your Dr to call in some lidocaine gel that will numb it some to get you some temp relief...

navemj
11-04-2007, 04:28 AM
I am not sure if elavil is addictive, but I did have a hard time coming off of it. I also forgot to say that I also use olive oil in the vulva area. My gyno I used to have told me it can be very soothing. It really helps! But of course you may want to always check with your doctor first.
Maryann

RWadeJ
11-05-2007, 04:36 AM
Thank you for posting this thread. I've been having this problem now for at least two weeks and its driving me mad. Its almost like someone said a mild PSAS, and it isnt funny.

I did have an exam Friday and my dr put me on Flagyl for bacterial vaginosis. I've had BV before and didn't have these kind of symptoms so I think this is something seperate. Maybe hormonal, I dont know.

I just had 3 cortisone shots in my foot, 3 week apart, for plantar faciitis. Do you think this could have flared up because of those?

I havent taken Elavil for a long time but went back on it when this weird throbbing/burning/vaginal stuff started. It hasn't seemed to do much for me at this point.

Someone asked abotu Elavil being addictive. When I did the study for it back in 2005, the one thing they told me to be careful of, when you go off of it, to taper off of it, not just stop it "cold turkey". But no, its not addictive that I know of.

Janice

Angeles
11-25-2007, 04:57 PM
I started this pain for the first time less than 10 days ago and slowly increased, it came along with bladder pain which I haven't had in months.
The only thing I did differntly is I changed BCPs from Femcom Fe to Loestrin which is high in progesterone adn heard that is rough on ICers. I did that to stop the sppoting + breakthrough bleeding I had on my third week of the cycle while on Femcon (= Ovcon) which is higher in estrogen and apparently causes sppoting and such.

I'm pretty sure the bladder + clitoral pain are related to the birth control pill, in my case, and today was my last day on Loestrin. THANK GOD.
I don't care if I have sppoting, I may go back to Femcon or just be without birth control pills for a while.

I have read this whole thread and I saw a lot of women going through this horrible pain.
I was dissapointed that I haven't seem many posts about helpful/sucessful treatments. So Here is a brief summary from teh 15 page thread, on treatments:

1- Lyrica (which I have tried for IC last year and gave me bad head aches)

2-Elavil (which I'm already on but I'm upping the dosage)

3- Cymbalta : which I'm interested in this one...(posted by Leelee).

4- MSM gel (posted by Roxy)

I guess the above is a small summary for someone who wants to have a quick look at the options.
God bless all of you.

deborah bush
11-27-2007, 08:38 AM
Hi SMR218 I take Effexor XR 300mg. for my clotoris pain and for depression. Deb 2 How are you doing?

Deborah Bush:cat:

leelee88
11-27-2007, 08:59 AM
SMR,
My symptoms came on all of a sudden to. I have tried stopping birthcontrol pills and my symptoms did not go away, but my IC symptoms were extremely worse along with my endo, so I decided to get back on them and now I am on continious birthcontrol. Also the meds I am on have seemed to calm that sensation feeling down.
I will say I did go off of Cymbalta, but it did help. I had started taking Tofranil and was feeling really good so I decided to start getting off some of my meds. Because I was on so many.
Well I hope you getting off the birthcontrol helps, if you need anything just let me know..

deborah bush
12-04-2007, 08:45 AM
Hi Deb 2 How are you doing???????

Deborah Bush:cat::hi:

Debe2
12-10-2007, 09:43 AM
***I have been off the boards for awhile so I didn't know you were asking about me! I'm ok I guess. My clitoral pains are off and on. I went up to 1200mg of gabapentin a day. I am resigned to having this discomfort for the rest of my life. At least it is not as bad as it was in the beginning. How are you Deb? Are you on any new medications that have helped you?

Happy Holidays to all!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Deb2
:angel:

dreamy
12-17-2007, 08:55 PM
I have noticed this too. Its like a tickle arousal feeling in the urethral meatus and the clitorus. When my bladder is full it is more intense. If I press on the area on the top wall of my vagina the sensation is increased. What is that? Ive only had it since the IC. It also makes you feel like if you have sex it might stop but it doesnt. It also comes and goes. When I did have sex it seemed to increase the intensity too. I dont get it. I wonder if its a urethral diverticulum or a cyst pressing on things in there creating that feeling. If anyone has any information or suggestions to help this please let us know.

dreamy
12-17-2007, 09:12 PM
I also wanted to ask if this feels like a tickle urge sensation to you? It feels like theres an ant with a feather tickling me inside my bladder neck and urethra. If I press on the urethral glands it gets more intense and it also makes you feel like you have to pee.

navemj
12-18-2007, 01:35 AM
hello everyone,
I think the clitoris pain is worse than the IC pain. Mine was brought on after I had laporoscopy for my endometriosis. Through alot of prayer and research I started taking medicines for constipation which would really help. I started physical therapy for pelvic floor dysfunction. It was wonderful. It really helped. I also did bladder installations three times a week which consisted of sodium barcarbonate, lidocaine, and heparin. I stopped using all shampoos and soaps with perfume. Washing my hair in the sink really helped. Only wore white cotton underwear. I cleaned used olive oil around the tissue of the clitoris which soothed the tissue. I am now doing much better. I have some episodes now and then but it is usually because I am constipated or my IC is acting up.
Maryann

leelee88
12-18-2007, 05:05 AM
Thanks for sharing that Maryann...

lisabar36
12-18-2007, 05:29 AM
I also had this, it wasn't as painful as some of you are describing, but it was there and it was uncomfortable, I had it off and on for YEARS, and being constipated made it worse, now for me, the Elavil worked and it has yet to come back since I started the Elavil. I noticed that was one of the first symptoms to go away, and I was so glad. Elavil from my knowledge is not addicting.

lisabar36
12-18-2007, 06:08 AM
I also want to add, I was diagnosed with IC in 1999, I did not start Elavil until September 2007, so I had that problem off and on for so many years. In 1999 the doctor gave me Elavil, 50mg, he said that will help you, at the time I weighed about 105, I took it and the next day I couldn't see straight, I woke up, I couldn't stand, I was dizzy, it was AWFUL, so for years I would tell the doctors I do not want it until this recent doctor pounded in my head it was to high of a dose to start me with, and to give it a try on the lowest dose possible and then he would work my way up, so thats what I did and I was so scared, but I did fine, I had no side effects at all. Thats why I think its so important to start at a low dose and work up to a higher dose because then you sometimes don't get all the side effects while your body builds a tolerance. And since I started it, I have felt so much better, I know its not for everyone, as we are all so different, but there are other meds out there to that help with that.

Debe2
12-26-2007, 08:36 AM
***About Elavil: Could you tell me what dose you started on? What dose are you on now? How slowly did you increase youe dose? I ask because I may want to try it myself soon. Right now I am on gabapentin 1200mgs. It has stopped working. I'm not sure if I want to increase my dose, or try the Elavil. I see that you used neutronin ( name brand gabapentin )-are you still using that too? Did it work for you?? I am very upset to have my symptoms getting worse again!! Thanks in advance for any help!
Debe2
:angel:

Debe2
12-26-2007, 08:46 AM
***What you describe is exactly what I feel. The only thing is I'm not sure about the urethal part. I'm never sure what that IS exactly. To be blunt--it is not the pee hole area that has sensations. It the the clitorus area-the hood and the inner lips. It DOES make you feel like you have to pee more--and it does feel better after you pee--but I'm not sure it's really urethal. There is no burning when I pee. My gyna said there can't be anythibg pressing on the clitorus area...but I'm not sure I believe that. I have also realized that what I feel is a vibration that never stops. When I lay down quite and concentrate on it--it is a vibration causing the sensation. WHY? I have no idea!
Debe2
:angel:

lauraads
12-29-2007, 06:31 PM
I just wanted to throw on this list that I feel each of your pain and appreciate this thread because of all the exploration of options that is going on in dealing with this major frustation.

I thought permanent clitoral 'issues' were going to be a part of my IC (I had pain, sensitivity, and constant arousal for about a month). However, I am sharing because perhaps there is a tiny possibility that you might be missing something that could be contributing to it like I was! In my case, when I stopped taking licorice root tincture orally it went away in about a week and did not come back until I started using a cocoa butter body moisturizer. Basically, in my case, there are a few things that cause my symptoms -- some taken orally like food and others applied topically to my skin!

I know those sound strange items and my husband thinks I am crazy but it's true. I experimented and with them I am in hell with the clitoral issues and off them I am symptom-free (at least in that particular area).

Anyway, it would be nice if it were that easy for you! Hang in there, each of you!

heavenly7
12-30-2007, 06:26 PM
Heavenly 7
I haven't been on in awhile. I have Ic and vulvodynia. I don't have the one where it is sensitive to the touch. I believe my clitoral arousal came after a breakup many years ago. I probably traumatized it by masterbating. The throbbing came on and off for many years, but it never stayed for any period of time. Not until this past March. The dr. upped my gabapentin to 1500mg. and I was on 25mg elavil and 25mg vistaril.
Then, almost 3 months ago I have been throbbing free. At that time, my gynocologist and I decided to go on lyrica. I have gained some weight in the abdomen and breast area. He also said that the lyrica and elavil does make you want to eat more, but you alone must curb your appetite. I have tried but the holiday season is difficult to resist. I did lose some weight though. Anything is better than having the throbbing. It makes me so depressed. He started me on 300mg. then 600mg. Then we upped it to 900mg 3x /day. We lowered the elavil to 10mg. This seemed to work wonders. Until a few days ago. It felt like I would throb but not really (hard to describe).Today after finding out that I have a UTI I got the throbbing. I do put ice there as it helps to get rid of the feeling. I put it right on the spot. I am glad that I have to go to the dr. on the 3rd. I wonder how we're going to adjust the meds. Will let you know?:pray::confused: Have a Happy New Year. Barbara

deborah bush
01-11-2008, 06:08 AM
Hi everybody!!! I have been having alot of pain. I am trying to get my Pain Doctor to call Dr. Brookoff and ask him same questions for me. I can not call his office anymore!! So I have been really depressed and my girl firiend just got out of the hosptal.

Deb2 How are you doing?

Deborah Bush:cat::hi:

kjd
03-22-2008, 07:40 AM
hows everyone doing. My stabbing aching pain is back.....can it be caused by stress as ive just bought house and so upset x

leelee88
03-22-2008, 07:46 AM
Oh NO!.. I think Stress has alot to do with EVERYTHING! But I have noticed also when my PFD is acting up I start having pain down there. I am thinking there might be a connection.. I am sorry you are hurting.. Congrats on the house though!

kjd
03-22-2008, 07:53 AM
thanks so much. well i have controlled most of my clitoral pain etc through elavil but the pain has been back the last few days so I have been really panicked and terrified its back! No one really understands and although my partner is sympathetic he doesnt realise just how bad it is. I suffer with shooting stabbing and achings pains which drive me insane. i am praying they havent come back and that this is just temporary? Does yours come and go? I have been very stressed as my partner was made redundent the day after we got the keys for house. x

leelee88
03-22-2008, 07:58 AM
Yes! Mine comes and goes.. The Topamax is what has helped the shooting pains the most! The Tofranil helps the everyday pain. BUT I still have breakthrough pain like you are descriping.. I think it is spasms.. And it happens when I over due things or I am really tensed or stressed..Try to relax. A long hot bath, deep breathing! And it will pass...

kjd
03-22-2008, 08:10 AM
thanks so much Ronda. I guess because I havent had it for 3months now I kind of told myself that just maybe it might have gone for good! then when I felt the twinges of it last night I just burst into tears! I'm taking elavil at the moment so maybe I need to up my dose or try someting else. Its an amazing relief to know others feel the same as at one point I thought I was going mad, its like my cliotoris is hypersensitive and its throbbing. Ive never tried Topamax so guess there are still plenty of mends I can try. My gynocologist even discharged me after my symptoms disappeared for 3months I guess that was just wishful thinking.

I guess you're right about stress and this is our first home and defo very stressful and the thing that scares me the most is I NEED my job to pay bills now. I just feel sick with worry xx

leelee88
03-22-2008, 08:16 AM
((((hugs))))) I truly understand.. Just try to stay possitive! :angel:

kjd
03-22-2008, 08:18 AM
thanks honi....I may be on here again later for some support! Losing hope at the moment had soo much bad luck! x

navemj
03-26-2008, 04:36 PM
Sorry to hear your pain has come back. I got clitoral pain after my laparoscopy. It was way worse than the IC. After a lot of prayer, I found that after I started Zelnorm for constipation it got much better. I had physical therapy for pelvic floor dysfunction. I switched around my shampoo and used olive oil down there to soothe the tissue. I dont' know what I would do without olive oil!! Also, I used elmiron compounded with estrace cream for awhile. (estrace cream can be very dangerous and thin the tissues so I only used it for a few weeks). I have found that lotions, shampoo, and too rough sex can cause a flare. Using a shower head that has a hose that you can hold down there and clean real good can be very helpful!! Medicine can bother mine too. Just know that you are not alone. There are others out there who understand your pain. I hope you feel better soon and you can maybe pinpoint what may be aggravating you.

Maryann

sami4
03-26-2008, 05:21 PM
Have any of you ladies with these symptoms ever been evaluated for pelvic floor disorder? I had VV and my specialist referred me to physical therapy which I thought was silly, but guess what? A huge amount of my urethral and vulvar symptoms were coming from PFD which will cause referred pain to the clitoris, vulva, urethra and just about anywhere in the pelvic and lower back area. When these nerves get irritated they go into kind of a spastic loop and even though Elavil which is a muscle relaxer will work, something has to permanently interrupt the loop.
Once you locate the pelvic floor muscles that are causing the problem ( I had internal vaginal therapy), you can learn to engage the opposite sides of the PF and they will release. You also learn to recognise when the problem is muscle spasms caused by this from other types of pain.
Nerve pains are often described as throbbing, stabbing, burning, tingling and so on.
Try to get an evaluation from someone who can evaluate the pelvic floor and see if it dosent help--what have you got to lose other than pain and a chronic problem?

leelee88
03-26-2008, 05:38 PM
Thanks for the info Sami!

Angeles
03-27-2008, 02:45 PM
.... Also, I used elmiron compounded with estrace cream for awhile. (estrace cream can be very dangerous and thin the tissues so I only used it for a few weeks)......

Maryann

Maryann,
You mentioned above that Estrace cream can be dangerous and that it can thin the tissues.
I was under the impression that Esctrace/ Estrogen would thicken the tissues. That's what I was told by 3 or 4 gynecologists and I've read it too. However, I always listen all sides of the stories.
Could you let us where you got that information? I'm really interested.

Many of us are using estrace or estrogen to thiken the vaginal or vulvar tissuess... and we don't want to end up with the opposite result.
Thanks in advance for sharing and glad the olive oil is working for you :-)

alyssa4
03-31-2008, 03:25 PM
To Dreamy,
That is just like what I've been experiencing. That tickling arousal feeling that for me seems to start in the urethral area then shoot up to the clitoris and there is this one area that if I apply pressure, like you said, will increase the sensation. I've mentioned that to doctors and they just roll their eyes at me. I don't get that sharp pain that many mention in the clitoris area, instead I get the annoying arousal sensations that are driving me crazy. I'm on Elavil and it has done nothing and my insurance won't cover lyrica, eventhough my doctor wrote a 2 page appeal, which was really nice of her. But she is my primary care physician. All the other doctors like gynecologists just tell me nothing is wrong. I too have only had this since the IC...actually it was one of my first symptoms and I have not found anything to help it. It is worse when my bladder is full, whenever I drive or sit in a car, or lie down on my left or right side. It is also worse with my cycle. So far I have found nothing to help it but also have not found much support in the medical field. They just do CT scan and MRI and say everything is "normal". This does not feel normal. I'll be thinking of you.
Alyssa

Angeles
04-04-2008, 12:28 PM
Are any of you on Birth control pills?
My experience: the BCPs with high progesterone/progestin or equivalent tend to cause differnt sort of pains in us that arleady have imbalances with nerves, tissue damage etc. Pains can be suddenly allocated in i.e. the clitoris/

BCPs such as Loestrin, had hight levels of progesterone and almost no estrogen. I only took it for 2 months, on the second month I was already typing on this thread. It also gave me bad IC flares. I stopped the pill and things got better and many ways, thank God. But it took a little while as the body has to re adjust to be without BCPs. The re-adjusting is not fun either.

If I every go back to the pill I'll choose one wtih more estrogen or low levels of progesterone.

Worth discussing with your gyne. I think the clitoral pain or wherever your pain is more emphasized is a combination of things:
Pelvic Floor dysfunction
Hormones
Nerve damage
skin/tissue damage
of course IC or VV
All of the above or some of the above.
Try to figure out how what's causing it is the key, and many doctors don't have "the key". You'll have to do some trial and error under their supervision.
Have a nice weekend.:)

catch
04-13-2008, 04:33 AM
I am a new member to IC network, but not to IC problems. I am trying to control my symptoms through diet. Sometimes it helps, but trying to define which foods, herbs, supplements etc is so over whelming.

Has anyone tried Acid Redux, CystoProtek or Bladder Q with any success? I do not wish to be held prisoner to prescription drugs and don't particularly care for supplements either, but always hoping and searching for a solution.

leelee88
04-13-2008, 05:18 AM
catch, welcome to the ICN..I have been taking Glucosamine/MSM and having good results from it..

SharonA
04-13-2008, 07:24 AM
catch...I reposted your post to another Forum "Share Your Interstitial Cystitis Story" in hopes you will get more responses.

deborah bush
04-14-2008, 10:26 AM
Hi!!Deb2 I went to see a Neurosurgeon in Morgowntown, WV and he agreed to put in a Nuerve Stimulotor in my back. They would do a trial study first to see if it would work then if it those then would put the pimlp. when in

Talk with you soon.

Deborah Bush:cat::hi:

deborah bush
04-16-2008, 10:07 AM
Hi!! Everbody!! What's going on with everbody? My pain level is been up for me. You all have nice day.

Deborah Bush:cat: