Vulva skin lesions

[Lumenia]

I have been having what a general practitioner called "vulvar dermatitis" since 2016. I'm not convinced of the treatment or the diagnosis. Let me explain.

I have a history of autoimmune disease (Hashimoto, Rheumatoid Arthritis). I didn't find out until recently that Bechet's disease also runs in my family and seems to manifest in vulvar lesions.

The lesions have been random and uncontrollable. I can't predict what causes them and it seems like they are happening at least monthly if not more often. The lesions are red, swollen, and sometimes peeling. I seem to mostly get it on my left labia and pernium.

I am wanting to know if this was you what would be your next steps? I have been dealing with it and I'm at my witts ends. It has caused so many issues (vulvodynia- I now have nerve pain from the flare ups and anxiety around pelvic floor exams and sex). I have been given a steroid cream and told not to use it on mucus membranes which is mainly where it seems to be. Nothing is helping. I can't have sex because of the pain. Should I ask for a biopsy? Another exam?

[Konagirl60]

This all sounds very painful and utterly stressful.

Have you been seen by a dermatologist? This specialist is a skin doctor.

Have you been tested for HSV-2? Could this be the type of herpes virus that is caused by sexual activity with an infected partner? HSV-2 causes red vulvar sores. There are medications that can help alleviate any pain.

My suggestion would be to see a dermatologist, ask for HSV-2 testing AND try taking Sea Buckthorne oil tablets.

[Lumenia in reply to Konagirl60]

I have been tested for bacterial infections, utis, HSV-2 and other stds and all are negative. I have not seen a dermatologist so maybe that's the next step? Thank you for the advice.

[Konagirl60 in reply to Lumenia]

Yes, I would see a skin specialist.

I would definitely try using Sea Buckthorne oil caplets as well.

Good luck.

[Porridgegirl]

Things I have found helpful for similar flare-ups include pure lanolin cream (sold as nipple cream for breastfeeding mothers) if you are able to tolerate this. Seems to help heal the lesions. Warm baths in plain water are also helpful to me. I try as far as possible to avoid any possible irritants, although this can be tricky. My condition may be different from yours, a visit to a dermatologist may well be a good idea.

[ColonLess]

Like you, I have been suffering with redness, itching and pain on and around my vulva and labia. My gynecologist took biopsies, and all possibilities were negative. I have tried many ointments, including Clobetasol, but get little relief. Both cortisone 10 and lidocaine creme help with the itching and pain. I have found that and rubbing or scratching aggravates the pain immensely. Even in the shower, I have to wash that area extremely gently.

Thanks to this condition, sex is currently

impossible for me. A plastic surgeon told me it may be possible to cut out the affected area, then rebuild it. That sounds extreme, but I may consider it. I plan to make another appointment with him, and ask lots of questions.

[Lumenia in reply to ColonLess]

I have heard of this. I think its for a vestibulectomy. It removes the overgrowth of nerves that is causing the issue. I hope you get some relief. I hate that no one has a solid answer for you.

[Black_Cat1]

Hi my daughter has vulvodynia and fibromyalgia which seem to go hand in hand I have been on here several times for opinions but it's really not very known. I did find something for her after reaching and she said it really helps when she gets flare's, it's called Femigel tea tree oil Australian body care. I think I got it on Amazon.

Also CBD suppositories.

I hope this helps 🙏

[Perry1270 in reply to Black_Cat1]

I have been prescribed vaginal suppositories that contain a small amount of diazepam and they really help with my Vulvydania.