More girl talk...

[Duchess]

Hello ladies,

Has anyone been diagnosed with Vulvar Vestibulitis? Well, I was this past summer.

I had been experiencing pain, burning, discomfort etc. in my vaginal region. These feelings would come when I would sit or stand too long, walk, after bowel movements ( have chronic constipation), or even just laying in bed. Sometimes the pain would radiate to the rectal and urethral area. Sexual intercourse happens sparingly.

I went to a Gyn. that sent me to a Uro-gyn. He ruled out interstitial cystitis ( a bladder disorder common in folk with autoimmune disorders). He made the diagnosis of V.V. I was clearly inflamed down there. It is the area between the labia minora and the vaginal opening. I was prescribed a topical steroid cream to be used sparingly because the tissue is so thin, and lidocaine gel for pain relief.

My visit last week was good. I still have flare-ups. I also have extreme vaginal dryness which the doc says could cause irritation because of the tissues rubbing together and of course SJS. Another contributing factor could be the constipation because of the accumulation of stool just sitting there. Iwas prescribed Premarin estrogen cream for the dryness ( it helps) and I will be going to the gastrointerologist for an exam because the gyn doc detected a rectal pocket where stool just sits there. In the mean time, I have been advised to take fiber supplements etc. It is very hard to find something that works longer that a few days for me for constipation.

One thing after another!

Duchess

[EllaBlue]

Duchess..when I feel better I have a very BIG story to tell you. I went TWO years where I could barely wear clothes because of the rubbing "there."  Lidocaine is still my BEST friend.

My stemmed from vulvodynia....and combined with menopause and this AWFUL doctor using ALDARA cream intra-vaginally on me, and well, she blistered my whole vagina and I was as red and shiny as a tomato. Meanwhile, I needed a colposcopy for my pre-cancer and TWO biopsies (vaginal) because the first doctor did not take enough tissue!

In the end, it was just plain vaseline, (NOT internally) but outside that got my tissue, slowly back to normal.  OMG what a hard thing to do through. IF you can, at night, go without undies....and although I cannot give medical advice I can share what helped me and what hurt me.

FINALLY I feel "almost" normal there.  The suffering is worse than anyone can imagine until they have that kind of thing going on, regardless of the reason.
I hope I helped a wee bit...my thoughts are with you!!
EllaBlue

[Duchess]

Thank-you. Hope you feel better soon.

Duchess

[DesignerS]

Duchess, what a horrible thing to go through   Hang in there! I hope the Premarin cream helps you. Let us know if it is a worthwhile cure for dryness.


Designer

[jessiblah]

I wanted to comment on the constipation issue you mentioned along with everything else. I found that a lot of GI issues i had were due to constipation. I take miralax every now and then. It is a powder that you dissolve in a drink. You take it once a day. It works very well and got me back on track. I do not need to take it any more but i do keep it on hand in case i have issues again. You can find it OTC at nearly every pharmacy.

[Duchess]

Thanks  Jessiblah


Duchess

[Myshkin]

Yes - but without those words. I think they ended up with Lichen Simplex - but Lichen Sclerosus and also malignant changes from HPV has been suspected along the way.

Actually mine was the other way around. I started at a vulvar specialist because of some white spots on my vulva. He ran every imaginable check on me and found nothing, which in the end prompted me to finally put the puzzle together and get my eyes checked and - Sjogren's. He also mentioned that to me as a possibility and other systemic disseases, but he as a gyn cannot do those tests ofcourse.

So i have an appointment next month to go back to him. He is wonderful!

My problems are dryness, a ulcer/sore at the vagina opening that just wont go away and white lichen around the entrance to the vulva. (Sorry for being so blunt but...) Actually I am pretty upset right now. It has been going SO great no problems or symptoms for months so I thought that part was gone. And today it just cracked and started to bleed. Stupid thing... I am heart broken and it is SO painful...

Why is it that every time some part goes better a new thing goes bad again? I would just wish for one month without needing to call the doctor. Please....

My best advices:

Less is more: NO soap - wash with a clean washcloth with water. No shower head or anything like that getting water up where it doesn't belong.
Vaginal ovules with hyalorinoc acid. I am using a local brand, but like these: http://www.cicatridina.com. They are marketed for women in the menopause, but dryness is dryness. I don't like Replens - but many says it works.
Steroid creams. I have used the really strong ones also for short periods of time for my really sore areas.

And make sure you don't have a fungal or bacterial infection. Dryness make us prone to that. I just had another today as well.

[Duchess]

 Myshkin, I agree with you that everytime one thing gets under control, there goes something else! Go Figure!! Thanks  for the suggestions. I forgot to mention in my original post that I also have an overactive bladder. Often times the urge comes so suddenly that there is hardly enough time to get to the bathroom. It's awful.

The Premarin cream for dryness is giving me some relief, hope it continues to improve.

Duchess