anyone had these embarrising symptoms

[debbie]

hi i live in australia. i am a 38 year old married with two children. for nearly 3 years now everyday without a break i have had terrible high pitched nerve burning pressure in my urethra area. but the worse feeling is that i feel like im on the edge of orgasm all the time. the nerves are sooooo sensitive and my stomach looks bloated. i have been to hundreds of doctors of all kinds, physio, chiropractor you name it. had two cysto which was normal except the 2nd one the doctor said my trigone was bit red so he burnt the skin there which did nothing but give me a terrible uti. i have had 3 utis since this has happened to me which only makes my symptoms unbearable. i also have the urge to like pump blood to orgasm but it burns and feels terrible. also since i have had this i rip from my but every bowel action. do you think this is ic? im ripping my hair out ive been wanting to get pregnant for so long but have been waiting. im going to start ttc now because of my age. thank you for reading this.also i have written to dr larrian gillespie and she reckons its my lower back compressing on my nerves there but i have been to chiropractor for a long time and nothing

[NB]

Debbie,
sorry you haven't got a response yet. Usually we get and give responses in the same day but i've noticed lately that there hasn't been much conversation on the boards as there usually is. It's usually alot more active, i think it must be a busy time for everyone.
I just didn't want to to feel forgetten.

Anyway, i can't say that i have the same thing going on with me. It sounds really uncomfortable and i know it must be so hard to try and discuss it with your doctor. I would be frustrated, embarrased and tired.
Of course you know i'm not a DR but it sounds like your nerves are having something going on with them. I know a girl from ICN who has derve pain and her DR prescribed Elivail. It's an antidepressant that is supposed to block nerve signals to some degree (or something like that)

Ummmm, i could be WAY off but it's just a thought. Alot of times we have to get info from eachother and present it to our DR and they sometimes say "Maybe should give that a try then and see".
good luck!!!!!!
Nadia <img src="graemlins/hi.gif" border="0" alt="[hi]" />

[Alleycat]

Debbie~


I really dont know what to tell you cause I dont have those symptons either. I wish there was something I could tell you in order to help you. I do hope you get to a good URO and get on some good medication and get to feeling like your normal self. Best wishes and your in my thoughts.

~Alison~

"We are tomorrow's past"
-Mary Webb ( 1881-1927 )
-Scottish Writer <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[Mary F.]

Hi Debbie,
I see a physical therapist who specializes in pelvic floor dysfunction. I have mentioned that I love this message board, and then once in awhile I talk about problems that some of us have. I mentioned your symptoms to her, and she said that she "hears that quite often." She said that you need to see someone (she is talking a physical therapist) who would work with you to desensitize the tissues in that area. Is there anyone close to you that you could see? She was very matter-of-fact about this, so I know that this is not a problem unique to you. I know THAT doesn't necessarily make you feel better, but at least know that you are not alone!!! Keep us posted on how you are feeling, please!
Hang in there!
Mary

[ICNDonna]

There is at least one person who has posted about clitoral irritation --- hopefully she will see your post and respond.

I do think it would be a good idea to mention this to your doctor; there are treatments available to help you.

Sending healing thoughts,
Donna

[beth_s]

Personally, I agree that it sounds like nerve irritation/compression. I would try a different chiropractor; they are NOT all the same. I have had the most help from those who use non-force techniques such as network chiropractic and cranio-occipital techniques. Maybe try checking online to see if anyone is in your area? Often dancers know who the best chiropractors and PT's are and they can be a good source of referals. Also I agree that trying Pelvic Floor therapy is also a good idea. In my case my back and pelvic floor were both messed up and just making each other worse; and both had to be treated together in order for me to get any better. I'm sorry you are having such a miserable time and I hope something works for you! beth_s

[debbie]

thanks everyone for your responses. last night i had curry which i dont normally have and i actually got woken up with feeling like a uti was coming and this morning i had to drink sooooooo much water to calm it down. it feels like my urethra is infected allllll the time. i wonder if a physio will stop this inflammed feeling. im so glad i feel bit better. if i dont drink water i can guarentee that a uti comes that is what happened when i first got this. im going to start ttc next week when im ovulating and getting bit nervous about being preg but fed up with waiting soooooooo long. can i ask what does a physio do does she have to massage your vulva area how embarrising. thanks again everyone.

[debbie]

to mary thanks soooooooo much for asking your physio for me. how can she desensitise the tissue there and can you ask if she has helped any girls get rid of this fowl feeling. can you ask her if other girls feel like they have an infection in their urethra everyday. thanks again i have two names of ladie physios to ring i get so embarrased having to see more people and discuss this problem. i get so upset when im waiting in the waiting room this is soooooo embarrising for me.

[Mary F.]

Hi Debbie,
I am sorry that you are not feeling any better.
I see my physical therapist this Thursday, and will relay your message to her then. As to this being embarrassing, just remember that these people are in the business of helping us. If someone can relieve your symptoms, that is what it is all about! This gal does mostly internal work on me, but I am so used to it that it doesn't even phase me anymore. If you DO go to someone, it gets easier the longer you go.
Have you tried Pyridium? Sometimes if I have some urethral sensitivity I take it, and it does help. I have found that if I am careful about what I eat and drink, the feeling goes away after a few days. Also, you might want to try keeping a diary of what you are taking. If the curry makes you feel worse, write that down. That may be one of the things you need to avoid.
I hope some of this is helpful!! It is very frustrating, I know. This is a wonderful place to get information and talk with understanding people who KNOW what we are going through!
Mary smile.gif

[Shelleynz]

Hi,I've just read yr. post. I used to have similar urethral/clitoral pain like you, which in my case is neuropathic pain. I've found Neurontin and Elavil (Amitriptyline) keep it well under control. I take Tagamet as well.
Shelley

[debbie]

shelley hi neighbour in new zealand. hey i went on that drug anti depressant got up to 10 mg made me feel morning sickness and very tired got used to it abit but i only felt a little tiny bit better. im trying to get preg so ive gone off it cause the doctor said it wont get rid of it only take the edge off. how much are you taking and are you putting on weight with it which i was freaking out about. thanks for replying

[debbie]

thanks mary. what is pyridium and is it a drug that you have to go to the doctors for? ive started to avoid tomatoes now and chocolate. if anyone touches in the vaginal area and touches the urethra then its terrible and i have a burning feeling and then have to orgasm for relief. this sounds sooooooooo stupid but its the worse thing i have ever felt and you feel not like a real woman but feel kind of ashamed having to touch there its so revolting to me. yes thanks for asking her again tell her its like when you are cold and hot flushes like when you panic but down there and it burns but heat makes it feel better and it feels swollen and pressure and infected. and feels like ive got a catheter or something there all the time. or like when you have your periods and you leave a wet pad there for a week and its rashed and burning inside the urethra. sorry bit hard to explain but only water calms it down the best. if its really bad then orgasm makes it burn more and the nerves are even more high pitched and want to orgasm again and again. also if i press onthe left hand side there must be a blood vessel between the clitoris and urethra that calms it down but then i feel like pumping that around oh bummer this is fowl. thanks so much for helping again i really appreciate it. i wonder if she knows someone in adelaide, south australia that would be good.

[Shelleynz]

Hi Debbie, You're brave to describe such embarrasing symptoms. I used to have them too but always too shy to describe them so accurately. It helped me to read your post and realise that I wasn't the only one, all those years ago. Do you get a pins & needles sensation with the burning and irritation? I had that too. It was my most annoying symptom b/c it kept me awake for hrs. at night. Do you manage to sleep ok?
Anyway I don't know if you can take Neurontin & Amitriptyline when you're pregnant or trying to get pregnant, but I can understand your concerns about side affects with Amit. Before I tried Neurontin I needed 75mg Amit./night BUT when I added Neurontin 300mg/morning and another 300mg about 5.00pm, I was able to cut the Amit. down to 25mg/night. The 75mg. caused rapid weight gain (2 stone), day time drowsiness and strangely enough, depression. The good news is, that Neurontin & Amit. work better for me together, than either of these medicines alone. Just my experience, but maybe it will help you.
I see someone mentioned Pyridium. I don't know about Australia but we definitely can't get it in NZ.
Shelley

[Shelleynz]

Hi again, I just re-read your post. Obviously Amit. is no good for you if you felt sick on just 10mg. You might do better on Neurontin.
Shelley

[Mary F.]

Hi Debbie,
Pyridium is a urinary anesthetic. It works for me if I am having sensitivity in the urethra. I got it through my urologist. It turns your urine orange, so if you do get it, don't be surprised when you see the potty! I don't know if it would work for you, but it is worth a try, if you can get it. Also, I noticed the one posting tonight regarding the bacteria. It was headed "Everyone must read!!" I intend to see my urologist, and ask to be tested. Why don't you, too? Especially if you are trying to get pregnant, it might be really helpful. Even if a few of us would get long-term relief, OR A TOTAL REMISSION of our symptoms, this would be incredible!! I still will ask my physical therapist about your symptoms, though, and I will put you on my prayer list.
Hope you are feeling a bit better! <img src="graemlins/hi.gif" border="0" alt="[hi]" />
Mary

[debbie]

thanks mary ill go read that now. and maybe ill ask my doctor if i can go on that drug next time i go. are you a christian? i do believe in pray myself so thank you so much and i know God will heal me of this im not giving up hope. thanks so much for your help i appreciate it.

[debbie]

shelley thanks for the post smile.gif yes kind of pins and needles there but more like when you panic and get that cold and hot flush that is more what i get. but after sex i have like nerve jolts go down my legs from my clitoris lol i think i have a very sensitive vulva. so did you have exactly what i feel for years i cryed thinking i was the only one feeling this worse feeling and sooooooo embarrising. well ive learnt not to be so shy as before to get some help from this. i do sleep much better now but if i woke up and walked around i would want to pee and then after peeing i would get worse again. so i dont move in bed lol. if i pee and sit on the toilet and keep the urethra open kind of it helps a bit but i dont do that because it makes it worse when iget off and then i have to orgasm because i dont know what to do with myself. im so glad other girls know this is not a nice feeling and im not a weird sexual person lol.

[debbie]

shelley are you okay now with this. and how long did you have this fowl feeling for? was it everyday mine started out only at night and now its all day every day frown.gif
hey my friends are emigrating to new zealand next feb. two hours from auckland. is it nice there to live? is it like aussie?

[mary a]

Mary F.
how can I send you a private? can I email you?

[Jodie-Maree]

Hi Debbie, I know exactly what you are feeling. I have had this uncomfortable, irrating feeling for a long time now. I also live in Australia(Perth)
I feel like my uretha is inflamed and burning all the time, its especially worse after I urinate. I have tried everything, anibiotics, anti-depressants,underwent a very painful cytoscopy, all to no avail.It doesn't sound like IC, it sounds like you have "urethritis", a bacteria bug in your uretha, which is hard to detect,with normal urine samples. Try visiting a natropath, or homeotherapy, they will give you some herbal treatments or try asking your GP first, and see what he thinks,I know there is a antibiotic "Doxycycline" which is supposed to be very successful. I feel so much better, I thought I was going to have to live with this unpleasant feeling forever, there is help out there, I pray for us all! Take Care smile.gif

[Mary F.]

Hi Debbie,
Tomorrow I see my P.T., and will ask her about your symptoms, and also find out if she knows anyone in your area you could see. She is very good at what she does, so maybe she would know someone. smile.gif

Yes, I am a Christian, and my faith has really pulled me through some tough times. I believe very much in the power of prayer!

Let me know how you are doing, please.
Mary <img src="graemlins/hi.gif" border="0" alt="[hi]" />

[debbie]

to mary thanks so much for helping me again. let me know what she says okay. yes im a christian as well and believe in prayer but i am going through a hard time wondering why this is happened to me and taking so long to be healed but then i know i have to trust God on this one. how are you? do you have much symptoms now and i cant remember but did you feel the same symptoms as me? thanks again

[debbie]

jodie hello neighbour. i havent been to perth in 20 years love to visit there again. so how long did you feel like me for? was it everyday? and when you urinated did you feel like you had to orgasm for relief. i might be pregnant now so i cant go on drugs. i have been to tons of doctors and they dont know what to do only give me a antiboitic that doesnt do anything. and did you feel exactly the same as me. do you have a bloated stomach? love to hear from you again.

[Mary F.]

Hi Debbie,
I couldn't see the P.T. today. I was actually in the car and on my way, when traffic came to an actual standstill and we moved like snails!! I was hoping to still get there, but up ahead they closed the road completely! frown.gif I have NOT had a good day! I called my P.T. and told her to call me to reschedule. She is always slow getting back to me. Turns out I heard on the radio later that there was a bad accident up ahead. By the time I would have found an alternate route, it would have been past my appt. time. I'm sorry I can't help you today. Could you call your Physical Therapy Association and ask them to recommend someone who specializes in pelvic floor therapy? Tell them that the person should also do "internal work," meaning that she would manipulate your muscles internally. I have found out that some P.T.'s who say they are specialists in this field do not all do the internal work.
Hang in there, and let us know how you are feeling! <img src="graemlins/lmao.gif" border="0" alt="[lmao]" />
Mary

[Mary F.]

Hi Mary A.!
I sent you my e-mail address last eve. Did you get it? This is all new to me, too. I just started posting in late August of this year. I'm hoping to hear from you soon! Do you know how to send a private message? You just click on the letter with the two people shaking hands. smile.gif

Hope you are feeling well, and I look forward to hearing from you soon! <img src="graemlins/hi.gif" border="0" alt="[hi]" />
Mary F.

[Mary F.]

Mary A.,
My profile shows that you didn't read my private e-mail to you. I checked my own profile, and my default for receiving private mail showed
"No," and I just changed it to say "Yes." Have you ever done a private e-mail? I haven't. Sorry about the confusion! I am very new at this!
Please check your profile, and make sure that it is set up to receive, or we may never be able to talk to each other privately.
Thanks! wink.gif
Mary F.

[Shelleynz]

Debbie, My worst problem was the pins & needles but I sure used to get those embarrassing symptoms too, on and off, with the pins & needles. It's comforting for me to know that someone else experienced this too, and it wasn't just me going nuts with this awful disease. I suffered with this neuropathic pain for about 8 or 10 yrs, during which time I had young children to care for. Luckily the IC didn't develop until after our 3 kids were born, but was tough with 3 under 5, when it struck.
Like you, I always feel worse just after going to the toilet (burning, irritation, pins & needles.) That feeling was driving me crazy.
5 yrs. ago I was convinced I would be miserable with these symptoms for the rest of my life, and now I've found 3 medicines that work for me, so who knows what lies ahead in the future for you. Never give up hope of feeling better.
We live in a little country town, 7 hrs. drive south of Auck. I've visited Auck. a few times but don't know it all that well. It's quite warm, compared to the rest of NZ, but it does rain a lot.
Neurontin might be worth a try later but I'm not sure about taking it if you're trying to get pregnant, or during pregnancy.
I hope this helps
Shelley

[debbie]

so shelley after you peed did you have worse burning and worse feeling to orgasm badily. ive learnt now only to pee when i have a really full bladder and the burning has died down abit. i drink heaps of water and cant handle it if i dont have urine in my bladder. boy you had it alot of years. NO!!! im not giving up i cant handle to live like this forever and i wont. so what is neurontin? and what other medication where you on? and what doctors did you have and did they take you seriously?

[Shelleynz]

Debbie, I'm like you in that I feel better if I hold on a bit and wait until my bladder is properly full before I go. That usually prevents burning or doesn't make it as bad.
My doctors, both GPs and Uros., tried to help me but didn't know much. I found out about Tagamet from our National Support Group, which is is probably why it's the most common treatment for IC in NZ. It has helped a lot of patients here, some of them so much so, that it's all they need. Neurontin is specifically for neuropathic pain (pins & needles, burning, throbbing and shooting pains like electric shocks.) Amitriptyline helped a lot with pain too and also with urg/freq. I never had the urg/freq. too bad tho., unless I was flaring.
It's really that mix of Neurontin/Amit. that helps me the most. I used to be such an exhausted chronically ill mess until I found medicines that helped me.
I found out about Neurontin and Amit. on the ICN message bds. etc. Neurontin is so new here that I was the 1st person who ever asked my chemist for it and the warehouse had never even heard of it! I'm sure you'll be able to get it in Australia tho.
8-10 yrs. was a long time to be so ill, with no support or hope of getting any better. I had a couple of suicide plans in those days but really glad I didn't do it.
Shelley

[debbie]

oh shelley im so glad you didnt go ahead with your suicide thoughts. ive been very down at times but i have God to talk to and cling on to. but its still been hard. i wonder if i could take those while im pregnant. im so glad im not the only one i used to get so down thinking i had the weirdest body and even thought of cutting my clitoris out thinking that was blocking and back flushing infections in my urethra. if i peed all the time i would be a real reck. i know in myself when its safe to pee and one doctor said holding onto alot of pee is bad for your bladder but dah what do i do about it he didnt know. have you been on macrodactin that is what most doctors tell me to go on but did nothing in a few months of trying it. im so glad you are feeling better. do you get those orgasmic feelings still or is it gone? thanks so much for talking to me i appreciate it.

[Mary F.]

Hi Debbie,
I saw my physical therapist today, and she said that she really doesn't know of anyone personally in Australia. I don't know if she will check into it or not, since she is always very busy. Have you tried to find a P.T. in your area? Normally they would be listed in the phone book, wouldn't they? She really feels that this is a nerve-related symptom, and says that you need someone who can desensitize the nerves in that area. I wish I could help you more. Please let me know if you find anyone to see! I'd like to keep in touch! <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />
Mary F.

[debbie]

thanks mary for doing that. ill have to go to a physio but im so hoping im preg this month. im 38 and dont want to wait anymore i might lose my chance for another one frown.gif did you tell her that it feels infected all the time? yes id love to keep in contact with you. ill let you know what i do.

[Mary F.]

Hi Debbie,
Wouldn't that be great if you were pregnant? <img src="graemlins/lmao.gif" border="0" alt="[lmao]" /> I had my daughter when I was 37, and they surely are a blessing.
My physical therapist feels sure that you should be able to get some relief if you saw a pelvic floor specialist. Have you checked the IC sites on your computer? They have some people listed in Australia. I looked today, and there were a few people, but I don't know how close they are. Or, just type in "Physical Therapists for Pelvic Floor Dysfunction." I found my P.T. on the web, and not even on the IC Network. She is great! I am really feeling good at this point, and now will be going every other week, instead of weekly. <img src="graemlins/lmao.gif" border="0" alt="[lmao]" />
You are on my prayer list, Debbie.
Mary F. <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

[debbie]

mary can you tell me the site with the australian physios are? ive typed in what you wrote but came up with nothing. maybe ill try again. but cause i feel infected all the time there do you think a physio will help?

[Shelleynz]

Debbie, I've just seen your reply. I don't know if you can safely take Nuerontin while pregnant. You'll have to ask your Dr. I have heard that some patients go into remission when they're pregnant and I know a lady here who said she felt best while she was breast feeding. She used to joke that maybe she should do that forever!
I haven't taken that medicine you mentioned (Mac.... (sp?) Is it an antibiotic?
I'm sure you'll find a treatment that helps. Best of luck.
Shelley

[debbie]

shelley yes its an antiboitic. well im hoping im preg to get my mind off of this. and hopefully get rid of this fowl thing. thanks for replying