Clitordynia

[leelee88]

Has anyone on this post ever heard of this? If you have, please!!! give me any information you have... thanks:help:

[Kathi]

Sorry, I haven't unless it goes by another name. What are the symptoms?
Kathi:)

[leelee88]

hello kathi, thats what im trying to figure out.. I have this trobbing feeling in my clitoris area.. like i have to pee , buts its more of a throbbing feeling, hard to xplain.. im just trying to figure out what im feeling, someone posted it could be clitordynia. but i cannot find anything on it:confused:

[hollipop]

It could be nerve damage. One of the branches of the pudendal nerve travels to that area. Have you ever consulted a neurologist?

[leelee88]

Hey Holli, no i have not, but i am writing all the info and advise i am getting here.. and im going to ask my dr.. something is wrong!!! its not in my head..it started about 2 months ago....i have had a hydro/cysto since then cause dr thought the IC was causing it, but after 2 weeks i have
NO relief..

[izazen]

I have that off and on too - in fact I had it today. Last night I had some light tomato sauce on lasagna and I attributed it to that - slight ache in the bladder area, then pelvic floor felt out of whack and the wierd pulsing feeling in the clitoris. Makes me even walk funny - almost "bow-legged."
WHat next?????

[leelee88]

yup thats the feeling, but mine never goes away:confused:

[ihurttoo]

Hi Ronda (leelee88)!! I tried to pm you back, but your pm box is full. I wanted to know if you had trouble finding that thread I was telling you about, or if you were having trouble finding any other info on Clitordynia on the ICN and/or the internet. Let me know if you couldnt find the thread, and I will try to dig up the link. I will also try to see if I can find anything on the web about it. If there isnt, then I will send an email to my Dr and ask him (this is the same Dr that did my vulvar vestibulectomy. However, he sometimes takes a few days to read his emails, but he does always answer! So, let me know how I can help! Hugs, Amy

P.S. Sorry I couldnt get back to you sooner, I was out of town all day.

[leelee88]

hi amy, i couldnt find anything on it:confused: if you can help .. that would be sooo nice of you.. im just so lost...

[ihurttoo]

hi amy, i couldnt find anything on it:confused: if you can help .. that would be sooo nice of you.. im just so lost...
Well, I can see why you haven't been able to find much on it! There just isn't much out there on it, unless we are just all spelling it wrong! But, I found the link I was telling you about here on the ICN. The poster's screen name is Yogajo37. You might trying sending her a pm to see if she has more information. Anyway, here is the link: http://www.ic-network.com/forum/showthread.php?t=18264 It is a long thread, but the first mention of clitoradynia is hers, at post # 14. She mentions it a few more times in the post after that.

I have read elsewhere that there may be a yeast connection. I am not sure if that is true or not. I don't know enough about it yet to know if there really IS a connection with the yeast or not. (Although from personal experiance, I can tell you that the only times I personally have had clitoral pain, burning, or itching, is when I have a yeast infection. And when I do get yeast infections, the yeast always lingers under the hood of the clitoris. (Sorry to be so graphic, but didnt know how else to explain it! :() Also, even on Diflucan, it takes several days of it to get rid of it there, although the rest of the yeast and symptoms are gone after the first day or two I am on Diflucan.

Anyway, if you google it, try spelling it different ways and see if that turns up anything else. I will ask my Dr. about this too. He is very knowledgeable and up-to-date. (He was the first Dr. in about a 100 mile radius of me that had performed a vulvar vestibulectomy, and that was on me, 4 years ago.) So, hopefully, he will know, but if he doesnt, he will be intrigued enough to want to find out!

Hope this helps you!

Hugs,
Amy

[leelee88]

Hi Amy, Thanks so much for looking into all this for me, I went to see dr today.. he didnt have a clue to what i was talking about, i ask what could be causing this throbbing feeling, he said it was the IC, because my urine came back neg for UTI..i just dont believe this, because he said my IC was one of the worse cases he has ever seen.. point being if its the worse case hes seen then this must mean i have had it awhile, but i have never had this feeling until after he did a proceedure on me to remove kidney stones.. it did go away for awhile but came back within a couple of weeks..i think theres more to it..it feels just like an UTI, but with no burning. i really think hes missing something.. thanks again Amy, i really do thank you for trying to help me......

[kjd]

Hi Guys

Just been reading you messages and wanted to let you know that I have been diagnosed with Clitordynia.
I was diagnosed with it about 12months ago and I was diagnosed with IC about a year and half ago.
My symptoms are constand throbbing aching pain, knife like stabbing pain in clitoris and feels like my clitoris is swollen and painful to touch.

My GP informed me that this is a common condition with IC and it is linked with IC symptoms. It can also be triggered by agrevation of the pudendal nerve but my neuolgoist said there is nothing he can do for me as it is is very common with IC patients and the only treatment is amytriptaline (or something similiar) which basically interferes with the nerve signals to relieve these strange sensations.

My neurologist said that he had one IC patient who was in that much pain with Clitordynia they were unable to walk for 2 weeks as any pressure on the clitoris crippled them.

I hope this is useful for you. I was given a leaflet on this condition by my GP but it doesnt tell me much information really.

take care
kate
x

[leelee88]

Hello Kate,
Thanks so much for replying.
I have been doing alot of research and there is not much on Clitordynia, but I know thats what I have, I believe that nerve has been damaged, I was not having any problem until the uro went in to extract kidney stones, which had already passed. I am on Elavil, and its helping some, but the sensation never really goes away..If you ever recieve any more info I would for you to share it with me..thanks

[kjd]

Hi Rhonda

No you are defiantely not alone so dont worry. My urologist said Clitordynia is extremely common with IC and vulvodyina.

I think mine is due to nerve damage too as I had a paracite in my bladder which I got in cuba and was in agony for a bout 6months when my doctor finaly realised I didnt have a UTI and the paracite has now gone.
However I have been left with IC, vulvodyina and clitordyina so I think this must have been caused by some sort of nerve damage by the paracite??!!

It drives me mad thinking about it and trying to figure out how the hell I ended up like this. i am sure you feel the same.

i saw a neurologist about the possibility of nerve damage and he said there is unfortuantely nothing they can do with nerves as they sometimes repair them selves and sometimes they dont!!
I have a leaflet from my neuro which says that the most common symptoms with nerve damage to the pudenal nerve are:-

Frequency (bladder), urgency (bladder), feeling as though you constantly need to urinate and as though you cannot empty your bladder, burning sensation when urination, leeking, pain in pelvic region, pain and throbbing around vulva incl urethra and clitoris. Pain on clitoris is throbbing aching pain and sometimes stabbing nipping sensation. Some women also have pain at the tops of their thighs, bottom and lower abdomen. Some women experience numbness, pins and needles, a crawling sensation on the skin.

I must say I have suffer with all of those symptoms and I think a lot of the ladies on here do too :-(!

The treatment for nerve damage is exactly the same as for treatment for IC (according to my booklet).

I feel like my clitoris is swollen and aching which is an annoying pain so I know exactly how you feel. Do you suffer with bladder problems too Rhonda?

take care
x

[leelee88]

I do have IC, but only feel pressure with my bladder unless I eat something bad and then I go into a flare, My doctor put me on elavil 25mg a night and I started Cymbalta yesterday.. The Cymbalta is an antidepressant , but has shown in studies to help with nerve pain, I know the elavil is helping, now I pray the cymbalta helps to..

[kjd]

HI Rhonda

how you feeling. i have that throbbing feeling in my clitoris today and it feels like someone is pinching it and it really hurts. If I put pressure on it, it helps a bit but just feels like its constantly throbbing.

I spoke to my urologist about it yesterday and he said that half the people with IC suffer with Clitoraldyina...........do you think this is true? Aparently IC is caused by some kind of nerve iratation which is more commonly the pudendal nerve which also runs down to the genitals.
At least you know you are not alone now Rhonda and so many other women have this strange feeling.
When I first got it I though it was going mad. I suppose its just like a man have a continuous hard on isnt it really?? Lol!
Anyway my doctor told me the only treatment for it is Cymbalta and Elavil which help calm the nerves down.
I have started both but not had any relief yet. It just worries me that there is no cure.
my mum suffers with nerve pain in her face and has exactly the same sensations but in her right eye! Just goes to show that nerves can cause some strange sensations and very complicated to treat.

Take care! :-)

Are you all organised for christmas?
x

[leelee88]

Hello Kjd,
I am sooo sorry you are having this same feeling, I do not wish this on anyone. My GYN prescribed me the same thing, Cymbalta and Elavil. I am taking 25mg of Elavil a night and 30mg of Cymbalta in the morning, but next week if im doing ok on the Cymbalta she wants to raise it to 60mg. I dont not know if its working yet, I guess I have not been on it long enough. However I used to take Elavil my GYN gave it to me a couple of years ago, because I was having flares of Vulvadynia, but at that time she didnt know what it was and said she had did studies on Elavil and it seemed to help people who had pain. It was a life savior, But about a year ago I stopped taking it..BIG MISTAKE..lol about six months of being off of it, thats when all this IC crap started..Well please keep me posted on how the meds are working for you.. and if I learn something new, I will be sure to let you know...

[miz_sunshine87]

I have that that feeling too. It's almost worse than the IC, or at least as bad. It's such a terrible feeling to have when you're out on a date (or anywhere for that matter!)

I am pretty sure that mine is directly related to my IC. When I first got IC, the clitoral problem was the first thing I noticed, followed by after by the bladder pain. When my IC went into remission, so did the clitordynia (of course I didn't know the name for it back then). Now, since my IC has reappeared, the clit problem is back too!

At first I thought it was my urethra hurting, because I know a lot of you have that problem, it also feels like the 2 parts are connected, but in reality they are not. Then I thought about it more, and realised that my urethra is nowhere near there. It's really weird...if it is referred pain from my bladder, why doesn't the rest of my vulva hurt? Not that I'm wishing anything upon myself, but how does pain "skip over" parts, and affect others??

If this doesn't go away soon I'm going to be urologist hunting, AND gynecologist hunting :cussing:

It's hard enough explaining to people that you have a bladder problem, but when it comes to talking about a hyperactive clitoris...well that is 10 times worse.

[leelee88]

Oh I know Miz,
When I was trying to explain this to my uro (which is a man) I was so embarressed, he just said its your IC causing this, well I know it has to do with IC "duh" now tell me what to do about it, before I go nuts, and he did nothing,said I would just have to get used to it:cussing:
Well I had to do something, so when I went to my GYN who is a woman, I felt a little better about talking to her, she said that its probably related to the nerve, if its throbbing, so she up my Elavil to 25mg and started me on Cymbalta 30mg and now im up to 60mg.. I now have just a slight sensation, no throbbing. I was so relieved, because it was honestly driving me nuts..
Well I sure hope you start to feel better soon, you can pm me anytime:smile tee

[kjd]

Oh Miz I know exactly how you feel! Its so annoying isnt it and although the sensation is there its so hard to explain it to someone isnt it!
I thought it was affecting my urethra too until I realised that they were not connected. How strange. It keeps me awake on a night too as I try to ignore the sensation but its impossible sometimes. Does it keep you awake Miz?
Heat packs or even cold packs are good to calm down the trobbing so I use these on a night.
I agree, mine is connected to my IC too as I am having a flare at the minute so the clitrodyina has got worse.
I have explained all this to my gyno but she just said it must be nerve irratation or damage!!! I dont think there is much they can do to help us do you??
It drives me insane sometimes as I cant ignore it.

take care
x

[kennedy]

Hello all!! :hi:

Wow, this is so comforting to know that others have felt this!! Mine started after I had a cysto/hydro with dialation. When I came to I had this horrible pinching feeling at the opening of my urethra, like someone was pinching my clitoris with a pair of pliers. It happens now when I become aroused, which is terribly inconvenient. My sex life has gone down hill since my cysto (well, my "IC sex life") because not only is arousal uncomfortable, but orgasm is almost unbearable. Does anyone else feel this way??
Thanks for "listening" :pray:

Kennedy

[kjd]

how is everyone feeling?

I felt ok but now its all flared up from having sex
x

[leelee88]

Hello Kjd,
Sorry you are flaring,(((((((hugs))))))))
I have givin up on intercourse..It is just to painful and makes me flare to bad.. My husband seems ok with this for now.. We use other methods of making love..I have come to the conclusion that Clitordynia and Vulvodynia and practically the same thing. I ask my new URO about Clitordynia and she said yes they are the same, just kind of in a differnant areas.. I just dont have burning with the clitordynia just more of a throbbing pain..But both are triggered by nerves and will flare when aggrivated by differant causes..I guess thats why the Elavil use to work so good on me and I was able to have sex. See the Elavil kept the nerves from getting aggrivated..The Topamax im on might help but just to scared to try just yet..Well I will quit rambling, but it was good to here from you...But sorry you are feeling bad..:angel:

[bunnykinb]

I just happened to stumble on this thread. I had this feeling of a throbbing clitoris way before I had symptoms of IC or being diagnosed. Of course, I have always been a peebody. Maybe the peebody me since I was a child was IC without me ever hearing of this problem. I haven't seen anyone else mention this here, but I am sure glad someone did. I thought it was in my head.

[leelee88]

Yup Bunny seems like a few of us here have this problem, mine is not as bad as it use to be, but it can flare up sometimes and the throbbing is torture..:(

[bunnykinb]

At times, it felt like I just couldn't take that throbbing feeling. I haven't had that feeling in years, just the main urethral burning which was not bothering last week, but it is today at work.

[navemj]

Hello, I have also experienced pain in the clitoris. I started having pain after my laparscopy. I went throught pelvic floor physical threrapy which helped very much. Also, Elavil helped me by blocking some of the nerve pain. thankful to God my pain was healed. I also used estrace cream. This was compounded with elmiron to apply around the area to strenghten the tissue, but their could be some risk with this and was my last resort. Thy physical therapy did trigger point therapy and ultrasound. I also done treatments via catheter three times a week with sodium bicarbonate, elmiron, lidocaine, and heparin for my IC . My gyno also told me to apply olive oil for soothing the tissue. I truly believe it is a nerve inflammation.
Maryann

[bunnykinb]

Maryann,

Do your instills help? I currently get DMSO monthly which I feel have done nothing for me. I have tried heparin monthly instills and Elmiron bimonthly instills. I don't know if using heparin mix and doing home instills frequently if that might help better.

I am using premarin cream which hasn't subsided any burning. I do apply it externally to the vaginal and urethral regions as prescribed.

[navemj]

bunnykinb,
Yes, the instills help, but I have to use the heparin, lidocain, and sodium bicarbonate. I have never used DMSO treatments. I had to do these treatments about three times a week for six months before I seen improvement, but it was worth the wait!
Maryann

[bunnykinb]

I had told the current uro that I had monthly heparin instills which didn't help. I had asked him if there was something else to try and he just said DMSO instills, bladder stretching and Elmiron. Well, I can't take Elmiron because the two times I tried, it made my throat feel tight. Anyway, I guess I have to be the one to ask to try the heparin mix at home and more often.