Ladies, it might not be IC!

**rockingirl** · 04-05-2008, 05:19 AM

Hello,

I haven't been here in quite some time as my IC symptoms have vanished. Woohoo! (ugh, well ok not really because I have either endometriosis or IBS or perhaps both). I figured I'd share my story because it might help someone.

But anyway, in college I got that intense feeling where it's like you have to pee all the time, and I was diagnosed with a persistent UTI but of course the tests came back negative for it. So I bounced from doctor to doctor, ended up mistakenly at the wrong urologist (I had been told to see this one guy, but somehow another doctor in his practice grabbed my files and met with me instead) and he wanted to immediately schedule a cystoscopy, which totally freaked me out, so I asked if there was anything I could try first. So he gave me some meds for overactive bladder, which essentially made me unable to pee, but the horrid feeling was still there.

Anyway, as a side though, my gyno checked the pain points for vestibulitis, and ouch that's what I had! It can give you IC like symptoms since the areas are so close. So I went on neurontin and elavil for a year in hopes that it would fix itself, but in the meantime I could use those meds to manage the discomfort. Well after a year I went off them and the pee feeling returned in full force

So I was sent to a specialist in the Boston area, Dr. Elizabeth Stuart, who runs a vulvovaginal clinic specializing in pain disorders. People from all over the world travel to see her. I guess in med school gynos were never really taught this field, and Dr. Stewart was surprised that my gyno had even known enough to diagnose vestibulitis. She believed that my vestibulitis had gone away, but that I had a skin condition down there like lichen planus, which my gyno never was able to notice. She gave me a steroid creme to use, and ALL MY IC SYMPTOMS ARE GONE!

So ask your gyno about these types of pain syndromes. You might be suffering unnecessarily!

dreamy · 04-05-2008, 08:59 AM

Hi rockingirl thanks for sharing this great news. I am glad that you are feeling great! What were your overall symptoms exactly? And what type of steroid cream did you use to get better? Also I am curious about vestibulitis, where are the trigger points that he tested? Thanks for the info! I appreciate it.

**rockingirl** · 04-05-2008, 10:15 AM

Originally Posted by dreamy

Hi rockingirl thanks for sharing this great news. I am glad that you are feeling great! What were your overall symptoms exactly? And what type of steroid cream did you use to get better? Also I am curious about vestibulitis, where are the trigger points that he tested? Thanks for the info! I appreciate it.

I had a burning and sometimes jabbing pain 'down there' and I felt like I needed to pee all the time even though I knew I didn't really need to. The steroid cream is clobetasol, and as for vestibulitis triggers, you'd have to ask your gyno about that.

dreamy · 04-05-2008, 11:04 AM

Thank you for that. I will ask about it.

**victoria/me** · 04-05-2008, 04:26 PM

Is the Clobetasol something that has to be prescribed? I have a really hard time getting my doctors to humor me when I propose different things.
Also, I feel constant urgency and frequency and some pressure. Does this sound like what you had? or similar enough?

**Zygala87** · 04-06-2008, 03:21 AM

Hello. I have a question for anyone who might know. I wish I had Vestibulitis that can be cured. I had a HYDRO and the pictures showed a very bloody mess of a bladder. Is that enough to tell me & the Doctor I for sure have IC? I am doing well, on Elmiron and watch my diet. I keep thinking maybe I never had IC then my memory goes back to those pictures that look like road kill! What do you think? Ziggy

***SharonA*** · 04-06-2008, 05:04 AM

Ziggy...What you are describing is usually what bladders can look like if IC is present. It is wonderful that you are doing so well with the Elmiron and IC Diet.

This is a link to see pictures of a bladder with IC:

http://www.ic-network.com/handbook/b...trio_large.jpg

**rockingirl** · 04-06-2008, 06:20 AM

Originally Posted by victoria/me

Is the Clobetasol something that has to be prescribed? I have a really hard time getting my doctors to humor me when I propose different things.
Also, I feel constant urgency and frequency and some pressure. Does this sound like what you had? or similar enough?

Yes you do need a prescription for Clobetasol. Your symptoms do sound like mine, so I would definitely ask your gyno about those possibilities.

**motherof4** · 04-06-2008, 06:50 AM

Did you have burning all of the time down there or once in a while?I have constant pressure and frequency and burn sometimes and sex is painful sometimes.I just had another hydro and it did nothing for me at all and my doctor said that my bladder looked great even though I have only been on elmiron for like 3 weeks.........

**rockingirl** · 04-09-2008, 05:23 AM

Originally Posted by motherof4

Did you have burning all of the time down there or once in a while?I have constant pressure and frequency and burn sometimes and sex is painful sometimes.I just had another hydro and it did nothing for me at all and my doctor said that my bladder looked great even though I have only been on elmiron for like 3 weeks.........

I only had burning sometimes, not all the time. Yeah that definitely sounds like something to bring up to a gyno, especially because of the pain from sex.

**lisabar36** · 04-09-2008, 07:03 AM

I am so glad to hear you are doing better. I love success stories.

Lisa

**cindydi** · 04-09-2008, 09:01 AM

My IC symptoms have also improved with Atarax and clobestol. I was also told I have a lichen type of dermatological disorder of the vulva.

Can you tell me how long you had to be on the Clobestol. I am going on 3 months now. Everytime I try to wean off of it. The symptoms return.

Thanks
Cindy

**glassd18** · 04-09-2008, 09:53 AM

Hi there,

What does the gyno see that tells them you have this dermatological disorder? I have burning and itching in around that area off and on, but yeast is always negative. I was using an anti itch with cortizone and that seems to help. I have pressure frequency, burning, and hesitancy. Thanks for sharing your story. Congrats!!!

**cindydi** · 04-09-2008, 10:52 AM

For me there is actual redness and erosion of the skin of the vulva.

**rockingirl** · 04-10-2008, 06:17 AM

Originally Posted by cindydi

For me there is actual redness and erosion of the skin of the vulva.

Thats the same with me. However my regular gyno has never been able to see this. I've been using clobetasol for almost a year now. I only use it twice a week now, but I think that we may have to use it the rest of our lives? I have an appointment with the specialist next month so I guess I'll find out then.