Re: 1st Post - desquamative inflammatory vaginitis

[Guest guest]

, maybe the biopsy is the best thing to do. What if it's not Lichen

Planus, but some other diagnosable disorder that can be addressed?

Ask your doc to send the biopsy to a dermatological pathologist who should

look for any identifiable disorder. Don't let her send the biopsy out with

intructions like " rule out Lichen Planus " because that's all the patho will

look for. You want the specimen checked over to anything known to a dermy

pathologist. This advice was given to me by a lady on this list and I had

my specimen reread by a dermy and that put me on the right path to tracking

down allergies that may have been contributing to my condition.

1st Post - desquamative inflammatory vaginitis

Hi,

So I've come to this board because for the past 6 months I've been

diagnosed with desquamative inflammatory vaginitis. I've been on

Cortizone suppositories for that amount of time and am not seeing

much change. I guess my pain had been maybe 8.5 of 10 and now it's

down to 8. Very disheartening. I've just arrived at the place where

I'm wondering if sex is worth the pain anymore. So tired of the

bleeding (sometimes), burning, raw thing. It is not fun! I've just

talked to my doc who now says maybe I have vulvadynia on top of the

DIV, which is just swell, getting worse instead of getting better.

Has anyone been on the cortizone suppositories and had them work?

I'm wondering since I am not responding if I am simply diagnosed. My

doc said she'd take a biopsy to see if it was Lichen Planus but these

ailments are apparently treated in the same way - cortizone - so I

don't see the point in undergoing a painful biopsy. Is there

anything else anyone has tried and succeeded with? Mainly my

symptoms are non-existant unless I have sex, in which case I feel

raw, sometimes bleed, or am hypersensitive. Thanks -

*****END OF MESSAGE/REMOVE WHEN REPLYING*****

http://groups.yahoo.com/group/VulvarDisorders

to search our archive or view our files.

***

[Guest guest]

,

My symptoms are very similar to yours no pain besides sex and raw agony after minus the bleeding. Be careful with the cortizone. I used cortizone to speed the healing process about 2 months after my surgery and while it helped immensely for 6 weeks the steriod in it then started to thin the new tissue. Like I said, I did have the surgery because I could pinpoint the exact areas that were painful after sex and now I have to take an anti inflammatory after sex Vioxx 50mg, but my pain has gone from a 9.0 to a 3.0 and my recovery time has gone from 3 days of painful walking after sex to slight discomfort. I have noticed I can no longer go in clorinated pools and my pain is 10x amplified if I have a bacteria infection. The only other thing that helped me was Elavil 50mg. I had much less pain, but I gained 35lbs. Good luck and keep us posted.

~Kelli

[Guest guest]

Hi Kathy,

I am also a patient of Dr. and have her book. It is good to

hear from someone else who is in the same situation and seeing the

same doctor. I've now been on the cortizone daily for 2 months and

no improvement (previous to that every other day and back for 2+

months), I think that it is just thinning the lining of my vagina or

something so it's not getting better/remaining inflamed. Basically

with the cortizone I'd rate my vaginal irritation at like 8 and

without it 9.5, but you know, it's been like 6 months and there's

very little change. Still, I realize from reading the posts here

that my pain (not noticable unless I have sex, I recover after about

24 hours) is not as bad as it could be. It's really just

inflammation, burning after intercourse, bleeding with

intercourse,...

Interestingly my accupuncturist had recommended the Estring and I am

going to ask about it today when I see Dr. S. Thanks for your

recommendation! My only concern is will it interfere with birth

control pills? I'm on the same regimen as you with the diflucan and

stuff. I'm 36 and never had any sort of gyno issue in my life before

this. Interestingly I did talk to a friend this week who had surgery

for Vestibulitis and totally recommended it. Thought it wasn't very

bad and recovery was fine. I don't know if that could work for me,

as my symptoms seem to be mostly internal, not external. Just

inflammation that won't go away. Still, it is good to hear from

people whose problems have gotten better/gone away. I was feeling

pretty hopeless last week.

Thanks all -

[Guest guest]

Hi ,

Just wanted to say I too can relate to what you said. I'm also 36 and never had any Gyn problems prior to this. I'm doing alot better than I was. A couple times I thought I was over this but still get flare ups. The good news is they happen less often and last only a day or two. I did the same treatments mentioned by others like estrace, long term diflucan, herbs, sitz baths. I wish I could say for sure what really helped but I think the only thing I could say for sure is time and trying to stop thinking about it 24/7 which I know is very difficult to do.

[Guest guest]

Went to see doc yesterday and she keeps telling me I am definitely

better, I just am not FEELING better. I suppose I should be happy?

It's better than hearing I am worse. Says the inflammation has

irritated the nerve endings so everything is hyper-sensitive so I got

her to give me Estrace (rather than the ring) and Lidocaine, the

latter of which is so strong I feel like it erases your vagina

entirely. Wild! She also had recommended I go on a tricyclic

antidepressant but I don't know if I am game, only because I was on

Celexa before and I was unable to have an orgasm the entire time.

Luckily I was so blissed out it didn't bother me - nothing did! I

felt like I was walking around drunk all the time. I must say with

the estradol and lidocaine I feel better already.

Thanks for your words about not trying to think about it 24/7, I

know what you mean! And thanks for everyone's kind words on this

board, they really do help. Though we are united in unpleasant

problems it is really soothing to know you are not the only one.

-