Clitordynia - Interstitial Cystitis Network Support Forum

***leelee88*** · 11-20-2006, 07:18 AM

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

**Kathi** · 11-20-2006, 11:41 AM

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

***leelee88*** · 11-20-2006, 11:49 AM

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

hollipop · 11-20-2006, 11:53 AM

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

***leelee88*** · 11-20-2006, 12:02 PM

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 · 11-20-2006, 01:32 PM

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*** · 11-20-2006, 01:40 PM

yup thats the feeling, but mine never goes away

ihurttoo · 11-20-2006, 05:40 PM

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*** · 11-20-2006, 05:43 PM

hi amy, i couldnt find anything on it

if you can help .. that would be sooo nice of you.. im just so lost...

ihurttoo · 11-20-2006, 11:14 PM

Quote:

Originally Posted by leelee88

hi amy, i couldnt find anything on it

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*** · 11-21-2006, 06:06 AM

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 · 11-28-2006, 11:34 PM

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*** · 11-29-2006, 03:15 AM

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 · 11-29-2006, 04:00 AM

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*** · 11-29-2006, 04:14 AM

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..