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Interstitial Cystitis and Vulvodynia Interstitial Cystitis and Vulvodynia

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Unread 04-12-2002, 11:38 PM
Interstitial Cystitis and Vulvodynia


It has been a while since I have posted or heard from my bladder friends. I was diagnosed with IC 6 weeks post-op from the hyst and Vulvodynia a little later. I have been through so much and now am learning to accept that this is my life now. I have a lot of lower abdominal pain and pelvic pain. I was wondering if anyone else has IC AND/OR Vulvodynia? I just wanted to share that with Elmiron, Elavil things are better for me. I was one of those women whom wanted a cysto/hydro right off, to see what I was dealing with. I did many rounds of antibiotic's to no avail. IC happens to 30% of abdominal surgery patients, why my uro does not know. My vulvar doc thinks I sustained nerve damage to cause my VV. I have a burning crotch and the blood was not flowing good to my pelvic area. I use Estrace cream every night.

I have did pelvic floor therapy for my PFDand VV. It helped about 50%, was not a cure all for me. Anyway my lower abdominal area has a burning pulling feeling to it, which could be adhesions, been cut on many times. I do not want to be cut on again, cutting leads to more adhesions to more cutting. With my IC I dare not risk setting the IC monster off.

Plus IC gals just have more bowel, lower back aches, lower abdominal aches in general. I do have pain with my bowels, again it could be IC? It likes to attack the interstitial lining outside the bladder.

I hope to hear from others whom share the same problems I do. It has truly changed my life and I have so much regret about my hyst, but hindsight never did a body good. I live on pain meds and will continue until a cure is found. I feel badly for all of us suffering after effects of our hysts. Pain makes you weary, but somehow I must make friends with this pain instead of always fighting against it.

Prayer really helps me get through. I sincerely hope to hear from my bladder buddies!

Rene. I am 18 months post-op.
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Unread 04-13-2002, 03:26 AM
Interstitial Cystitis and Vulvodynia

HI Rene, Im sorry to hear of your troubles ..I have been told that I may have IC but I dont think so (or I hope I dont) !!! I have only urine frequency where I feel the need to wee constantly but with no pain...I have been on forums/messageboards an I corrosponde with IC patients and I have heard alot of pain can be relieved with acupuncture ..I have had 6 sessions myself for the frequency and so far I feel better but still not 100% yet but it will take a long tough road and I hear that hormones effect this condition too ..Have you had your blood levels checked???Also I have read in a Dr book that IC can be a pre to menopausal condition in some women and may just dissappear after time ,after hormones settle or stable!!! do you have the urine frequency or urgency as well??? Well goodluck to you as it is a long road ,thinking of you debbiepxxx
Unread 04-13-2002, 06:35 PM
Interstitial Cystitis and Vulvodynia

I'm glad I found this thread though I am sorry to hear about your problems. I too have been having a burning crotch and my doctor thinks it's an allergic reaction. That doesn't sound right to me since it's been going on for at least a month. What is vulvodynia? Where can I get more information about it? Also, have you tried Prelief? Find info at My doctor told me that some IC symptoms can be lessened by not eating acidic foods. I have a bladder diet that she gave me. If you'd like it, let me know and I'll email it to you. I hope and pray that we can find a solution to this problem and that our psychic pain will heal as well. I am driving my husband crazy with this!!!!!
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Unread 04-13-2002, 09:30 PM
Interstitial Cystitis and Vulvodynia

Rene: Hi ! Sorry you are having such bad pain-
I was diagnosed with IC about 2 months ago & i am on elmiron, have modified my diet quite a bit & drink a LOT of water. I too am enduring unbelievable pain, my dr. thinks i have adhesions too. I get the burning crotch pain a lot- sometimes it feels like i've been hit right in the pubic bone with a baseball bat.
What does your dr. give you for pain? My uro gave me ultracet but i cant take it because it makes my migraines really bad (i HAD them under controll ). And i tried the elavil but just couldnt function on it - too tired.
Right now i am getting a 3rd opinion on whether i should get a lap done to see if i have adhesions. I really do not want any more surgeries unless i have to. My GP thinks i should have the lap and my gyn. thinks i shouldnt because the adhesions COULD be worse after another surgery. So i am getting another opinion in about 2 wks. I would like to go to a pain clinic & just try to deal with it that way.
I hope that things get better for you & you find some relief soon. 's

Unread 04-14-2002, 12:21 AM
Thanks to all of you.


Thanks for all the replies. I do have urgency and in the beginning a lot of frequency. Elmiron has helped my frequency. I do get spasms in my bladder and it makes me have the bad urgency where I have to go wee right now. I had a small leakage problem and PT did help with that.

Vulvodynia is a chronic pain of the vulva. It makes sex painful, I am not longer able to wear pants or underwear because it hurts my vulva to much. I ahve a burning feeling all in the vaginal, libia area. I sometimes feel raw and swelled. A gyno whom knows Vulvodynia will do a Q-tip test, where he rubs on certain points of the vulva and for a VV patient it is extremely painful.

I use Vicodin for my pain, it doesn't always take it all away though, it takes the edge off. IC is a painful disease for many, while other ICer's deal with urgency & frequency with no pain. A IC bladder under anesthesia looks red. A non IC bladder looks more gray or pearl color.

A lot of Urologists do not know IC. I have met many women who have been through a lot of tests and no answers until they get to the right Urologist.

I am sorry for anyone to get diagnosed with IC, VV it is horrible. IC causes a lot of lower back, stomach pains. I have burning, pulling pain on my left side, bit who knows adhesions or IC?

I do follow the IC diet. I only drink water and it has now been 18 months of only water. I eat no fruit except pears, no chocolate, no citric acid, no msg, no tomatoe products. My diet is very limited. I have found a food connection. I am not supposed t eat any salad dressings, however I am able to get by with a little since I have been on Elmiron for almost a year.

I hope we do get better all of us. It is hard living with IC, VV. I am now in the middle of a disability claim. IC, VV have robbed me off my job, sex life, no swimming chlorine flares my VV something awful. I am home all the time, take a lot of meds so it is best i do not drive much.

It is hard to believe I went into the hospital for my abdominal hyst to rid myself of endo many other problems, but my life changed within a instant. I dreamed of the day i would be pain free, but it was not meant to be for me.

I wish all of you luck and great bladder health. I hope you do not have Vulvodynia, you can find many sites on Vulvodynia by using a search engine like google and it will bring up many.

Unread 04-15-2002, 07:57 PM

Hi, I was diagnosed about a month ago with IC. My gyn sent me to a uro to make sure, and he was the first dr that knew the pain I was talking about! I am very lucky that in such a small town, 2 uro's, that I got the one that has alot of expierence with IC. I go in on Thursday and the uro is dialating my bladder, the disease has taken up over half of my bladder, and I also have stones he is going to do shock wave therapy at the same time. He did a cystoscopy two weeks ago to confirm it, that really hurts!! Right now I take percocet(2 every 4 hours), elavil(depending on what is going on the next day it ranges from5mg-25mg), vioxx(50mg), antidepressent, and many others to go along with endo and adhesions.
I hope things go well with you! I hope you find relief sometime soon! Cause you are right, IT IS NO FUN AT ALL!!! MY uro hasn't told me about the IC diet at all. He is a firm believer in the dialation and has had great success with it. He said I would talk to other DRs that would say he was insane and it doesn't work at all, but he also says he is from the old school and they still haven't found anything better, or anythiing that is 100%. So he still firmly believes in his procedure. I am keeping my fingers crossed!

's and 's your way!!
Unread 04-16-2002, 03:19 AM
Interstitial Cystitis and Vulvodynia

Dear nis, please keep us posted on your progress after the procedures your having,goodluck to you and Ill keep my fingers,toes and eyes crossed for you,ha !!!!love debbiepxx
Unread 04-16-2002, 03:41 PM
IC and VV


nis I hope the bladder distention will indeed bring you much needed relief. It helped a little with ym pelvic pain, but to be honest it did nothing for my burning upon urinating or frequency, urgency. I have been helped by Elmiron, not symptom free though. I wish you the best.

I use a lot of meds, here is a list.
Vicodin, Pyridium Plus as needed.

I do have pelvic floor dysfinction also and Xanax helps those spasms.

I am amazed how many women after a hyst present with bladder problems there has to be a big connection with this.

I wish none of you had to deal with this. I must say the Vulvodynia bothers me a lot. I am uncomfortable quite a bit with it.I wish I could wake up and this all would be a nightmare that would go away. But for now I am learning to live with it. I am 40 years old and tired of fighting it, so must someway make these conditions my friends.

Good luck to all of you and please do not give up until you have a answer to your bladder problems. I never dreamed a bladder could control a life but it sure does mine.

Thanks for your support and I am here if you need any questions answered about VV or IC.

Unread 04-17-2002, 10:51 AM

Hi! Thanks to you! I don't have the burning you are talking about, but I have the urgency, more than frequency, and they do have me on Detrol for that. Sorry forgot to mention that one, what is the Elmiron? Is it for the IC? I don't think I have the V V either. The only time I have those symptoms is right after sex and a day or so after, burning and swelling and super dry,(sorry to be so graphic). Should I be concerened and bring that up to the uro tomorrow? Or do ya think it is one of those irritations from not having sex for long time? I think we have had it 4 times since my TVH, also more than you needed to know.

Thanks again Rene! I really appreciate all your input and support!!! It's nice to know 'you're not the only one'!! Now since the word disease is attached, people treat you like the end is coming and they think you don't need your independence anymore. So it is nice to come here and to be treated like a whole person!! I can't thank you enough!

I talk to hospital here in a few minutes to see when I go in tomorrow so I will post and let all know.

Take care and many 's and er's to you!!
Unread 04-17-2002, 03:11 PM
Interstitial Cystitis and Vulvodynia

Dear nis, I would definitly tell your DR about the swelling ,dryness etc your symptoms sound like it might be from a lack of vaginal estrogen . I have read many women have this and insert "vagifem" an estrogen tablet for the vagina area only to help with these symptoms!!!...look into it more as this maybe all you need!!!! goodluck to you love debbiepxxx

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