I have seen a lot of posts for vulvodynia, but I what I have not seen is anything for vestibular papillomatosis. Has anyone else even heard of this? Or been diagnosed?
It is a subset of the vulvodynia classification. Apparently it is a common morphology of the vulva, and only rarely presents as infected or irritated. (Which is most likely bullshit because most of science is still studied by men who don't know shit about vulvar pain).
I've experienced general itching and raw-like pain in the skin around my vulvar and anal areas. There is also a ring of small finger-like projections around the entrance of my vulva that's hurts feels incredibly raw when I have penetrative sex. The best way I can describe it is as skin that doesn't stretch, no matter how wet or lubed I am. It's like my hymen has reformed and shrunk.
For a long time I thought it was a yeast infection because of how itchy I was. Then I thought it was BV because none of the antifungals were working. Then the antibiotics and creams didn't work either. Now I am starting to wonder if I have had this my whole life and am now just currently experiencing the worst flare up.
It's been 9 months of this and I've gone through so many tubes of cortisone and lidocaine. I'm finally taking action and finding a specialist. I guess I just wanted to see if there is anyone else out there who feels as hopeless as I do about ever having glorious wet and pain free sex ever again.
hi. I’m not much on this community and no patient expert - but wonder if you’ve considered lichen sclerosis as possible cause for tightening and severe itching and pain? If not you might want to find a vulval skin specialist as the itching and structural changes are the most common symptoms associated.
I appreciate the consideration and you make a good point! Vestibular papillomatosis seems similar to lichen sclerosus and is often misdiagnosed as such. The characterization of lichen sclerosis is the white, scaly patches of skin which I do not have.
ah right. I was struggling with very similar symptoms to those you describe and structural abnormalities in the architecture. My dermatologist didn’t think it was typical LS as not itchy - just pain. I then had a vulval biopsy a year ago. It was inconclusive but the pelvic floor physio said she could see blanching around urethra and clitoris as I can too. Maybe vitiligo though as I’m very autoimmune. Anyway I was only diagnosed with provoked vulvodynia finally - but definitely get intermittent painful skin issues so will look up your vestibular papillomatosis. I didn’t like the vulvodynia diagnosis as so non specific and I have such a complex systemic autoimmune connective tissue disease - which the consultant conceded. But then said that as I’d had traumatic vaginal deliveries 25-30 years ago and have severe cervical disc disease in C5-6 and C6-7 both have been implicated in causing vulvodynia. This maybe so but I still end up using Dermovate ointment sometimes to get on top of rashes in the area. Maybe folliculitis as I’m very immunesuppressed and prone to eczema
I have LS. Not all LS sufferers have the classic white patches, so I would not rule this out. Clobetasol Ointment is the gold standard treatment and is very soothing.
Also, have any physicians you’ve seen considered vulvovaginal atrophy (newer term: Genitourinary Symptoms of Menopause”)? Your symptoms are very common to atrophy. With atrophy, tissues begin thinning and shrinking. Labia can disappear, the vagina can decrease in width and length, the clitoris can recede and a hood of tissue form over it… many structural changes are involved. Vaginal estrogen is shown in studies to be very effective and safe for this condition. It is a treatment that should be done your entire life as atrophy will return and progress if vaginal estrogen is stopped.
Pelvic floor physical therapy has also shown to be very effective, but one needs to find a highly experienced therapist who had worked with many atrophy patients.
Hi your symptoms sound similar to mine, I have been down the same route as you regards to creams, I went to a private gyn i Live in London England, I was referred to a pain clinic which was a waist of £250 just to listen to her chat for 45 minutes and in the end put me on Nortryptilan which had awful side effects. Now I'm back to where I started 🙄 however one piece of hope is that I have to prudential exercise with a vibratory for dilation as I'm too tight every where even the bladder 😪
Oh that sounds awful! I hope you find the right doctor who understands your situation someday. I always felt bad for people with rare medical things that doctors didn't understand and now it is so odd to be one of those people.
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Vulvodynia - itching symptoms
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