Ladies, it might not be IC!

[rockingirl]

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]

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]

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]

Thank you for that. I will ask about it.

[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?

[Zygala87]

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]

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/bladdertrio_large.jpg

[rockingirl]

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]

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]

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]

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

[cindydi]

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]

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]

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

[rockingirl]

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.

[Diane123]

Thank you for this posting. I think I may have what you have.

I was dx with vestibulitis when I was 25 ish. I remember going on a bunch of creams and overtime it go better and it was over.

Now I'm 34 and my uro says he really does not beleive I have IC. I had a scope done and he said I had inflammation on the bottom part of the bladder and my urethra. He thinks he can clear it up with anitbiotics. I have been on anitbiotics for over 3 months now and no relief.

I am also on Elmiron (6 weeks), elavil and the antihistamine to help with bladder. No relief.

I feel like I'm going crazy!!! I want this to stop. I have no pain, just pressure and frequency. I told my husband today that I can no longer handle this. It is interfering with my life and I hate it!!!

Do you apply that steriod cream topically or intravaginally?

Please get back to me.

Thanks
Diane

[cindydi]

I use hydrocortisone suppositories internally and clobestol on the outside.
I still have some days that are bad but not horrible. My symptoms have definitely improved and I am able to have intercourse. My IC is managable now that my vulvar issues are managed.
Hope this helps.

Cindy

[Diane123]

I now have the clobestol steriod cream. I just went to my regular GP and she prescribed it. How long did you have to use before you felt a difference? I'm interested to know about the hydrocortisone suppositories. Who rx'd that for you? What is the name of it? How often do you use it?

Thanks so much.
Diane

[Diane123]

Are you on any IC meds currently?

[cindydi]

I got the Rx supposotories from the urgogyne. He said he saw some erosion and inflamation in the vagina. I kept having a discharge which was White Blood cells so he told me to take the supposotories. They are called Anucort and normally used for hemmoroids. It use them twice a day.
I saw good results with in a few days.
Keep me posted on your results with the clobestol. If your problems is autoimmune I think it will help.
I take Atarax for the IC.

[rockingirl]

Are you on any IC meds currently?

I'm not on any IC meds, but before I used clobetasol I had relief from the IC type symptoms by taking Neurontin and Elavil.

[Diane123]

what is Atarax? Never mind I just looked it up. I'm on Vestaril. Same thing right?

[cindydi]

Atarax is an antihistamine. Im not sure what vestaril is.

[AprilK08]

I am not sure if my symptoms are like yours. I never have the pain just the extreme pressure in the vulva area and pressure in the bladder area and a feeling like I have to go all the time. Is that clobestal a creme? Maybe I need to get my gyno to check that.

[cindydi]

The clobestol is a topical ointment. I had visible erosion and irritation, more skin related. My IC was under control with Atarax by the time I started to clobestol.
The clobestol is a strong steroid creme. It has worked for me to bring my life back to normal. As for all the vulvar issues and IC, you just need to keep trying new things and new docs until you find what works for you.

[Diane123]

The cream has done wonders for me. I am still on elmiron, elavil and vestaril b/c I'm not sure what has worked.

However, before going on the cream I was on detrol la, vesicare, prosec and pydrium. Nothing seemed to work.

I have also changed my diet. I don't necessarily follow the Id diet. I eat lots of veggies, try to avoid dairy and use lots of lemon in my water. Lemon is metabolized as an alkaloid in the body.

Whatever has worked I'm grateful. I have gome from peeing 20 + times a day to 6 - 9. I usually wake up once at night to pee.

It's worth to try the cream.

Good luck

[cindydi]

Diane123

I am sooo happy the creme has worked for you and your on your way to recovery! I have switched to a lower level steroid as I am trying to wean the clobestol off. I had been on the clobestol for 3 months and now we are trying to taper it.

Keep me posted on your progress!:woohoo:

[AprilK08]

I wonder if that creme is safe while pregnant. I am going to ask my doctor. I don't have any burning or irritation in the vulva just the pressure. It feels like I am holding a lot of water. When I stand it is sometimes worse. Is that what you mean by pressure? It also feels like the vulva area is hard as rocks.

[jen74]

I had unexplained thraot burning and inflammation anout 3 years ago, this was before I got IC. I went to the mayo clinic because of the severe burning pain in mt throat that was constant. They mentioned that I may have a boulous disease like lichen planus, but my biopsies did not show it. Then two years later I start getting the burning in my bladder.
Anyhow, the doc who Dx me with IC did a regular cystoscopy( not a hydro), and he said my bladder was severely inflammed. I asked if it could be that I have lichen planus and he said it could be possible, but I dont think he had a clue as how to treat LP. You need oral steroids to treat LP. I want to ask my urogyne if we will be willing to try me on some steroids for a short time just to see if this will clear up at all. I know doctors are very reluctant to give out steroids, but I am at wits end and think it is safer to try some oral steroids that to do surgery.
Jen

[cindydi]

I was told I have lichen planus. This is why I believe the steroids worked for me.
I would question the biopsy slides. I did... After I was told my biopsy showed an allergy, I didnt give up. I took the same slides to a vulvar dermatologist who said the same slides showed LP. You do not have to take oral steroids to clear it up. For me it clears up with topical steroids.
I think its always important to question and get as many opinoions as you can till you find out what is wrong. I know docs dont like this but it is your body not theirs. :)
I saw 10 doctors before getting the right dx.
I would go to a University Hospital where they do alot of studying on rare cases. That is where I finally got an answer. I took the results back to my other docs and they said.... "You know what I think the dermatologist is right!!!???"
I think its important to educate the ones that were wrong. To save other women alot of trouble.

[dminton]

Just a two-cents worth comment on clobetasol; if you find it burns too much, get it compounded at a pharmacy, without preservatives. It might help a lot.

[Kathy in Canada]

There are many women and even children going around with very sore vulvas that get cracks and whitish areas. The skin get thin. Sex is painful. You can get atrophy and fusing of your labia. You can get the skin over your clitoris fused right over so you can't see it. It can effect the skin around your urethral opening and the peri-anal area. It is called lichen sclerosis (sometimes people spell it sclerosus). It is considered an auto-immune disease (of course since they don't know what causes it). It is related to lichen planus.

It can be diagnosed with biopsy or if severe enough just by the symptoms.

It can effect the whole area from your vulva to your anus. People with it have a 5% risk of vulvar cancer.

I know of someone who is treated by one to the best drs for this disorder.

He uses Temovate (clobetasol propionate 0.05% cream) which is a trade name for a Clobetasol cream. It costs more than a generic. You could also have a pharmacy that does compounding make up a cream that might be less irritating than a generic clobetasol cream if Temovate is unaffordable.
This cream is used at first more frequently. I'm not sure of the schedule. You wean down to a couple of times per week. The dr recommends having a bath first always as the cream soaks in better when the water softens the area. Do this at night - so it has time to help you and not just get rubbed off. You use only a pea-sized amount as it is a very strong steroid cream. You have to stay on this cream, you don't go off it.

In addition to the Temovate this doctor treats his patients with Estrace cream to the same area. Estrace cream is a topical estrogen (estradiol) cream. There is also the possibility of having a compounding pharmacy make you a cream in a non-irritating base using the same estradiol dose that is in the Estrace. This cream helps revive and toughen the areas that are affected and help with atrophy and fusing. It is used in small amounts as well. At first it is used more frequently and then tapered down. You don't go off it and even young women that still have their ovaries producing estrogen need it. I could find out the schedule for the medications if anyone thought they had this disease. Baths are recommended before using either of the Temovate or Estrace creams.

The above combination of medications work very well. But you have to stay on it. It goes on all the areas that you have the disease even the peri-anal area. I read that people with peri-anal disease should also use the cream in the anal canal to get adequate treatment. The disease does not go away. You can have times that it is worse. It is important to take good care of yourself with healthy food, , vitamins, enough sleep and reduced stress.

You should not use soaps that are irritating and cotton undies are better. No bubble bath or things like that in the bath water.

If you get a yeast infection from these meds it is treated with oral Diflucan.

There is a web site for people with this disease that is informative. I think it is lichenschlerosis.org. There is good info. Some of the older patient stories are not that helpful. Many people were treated with other medications that did not work or were mis-diagnosed. I would look at the more recent patient stories (those with a higher number).

There is a connection to this disease and having thyroid problems-either hypo or hyper, so you should have this checked out if you have it.

I someone has very severe fusing that does not respond to the cream there is the possibility of having surgery, for example fusing of the clitorial area due to adhesions.

At one time testosterone cream was used for treat this disease but this is no longer thought to be a good form of treatment.

Kathy

[cindydi]

THanks for the info.

It is important to note. If treated properly the fusing will not occur. That is why it is important to get dx'd. Also, the disease can go into remission as IC does. For most people it can be controlled nicely with meds.

[Zuc]

I don't believe I have any inflammation but for years I have had constant pressure to pee, mostly at night. Every ten minutes, I feel the pressure. I have tried sleeping on my stomach to help but it still takes me hours to fall asleep. Once I'm asleep, I may wake up once or twice but that is no biggy.

I've been diagnosed with IC almost a decade ago and have not been on any drugs. I'm getting confused with all of the names. Does this creme specifically target the pressure? I would give anything not to feel that - a night's sleep without that pressure down there.

[cindydi]

I did not have alot of pressure, just irritation. I dont think the creme would relieve pressure.