Post # 1
Hi ladies, a very personal topic but I’d welcome any advice. I have lichen sclerosus, which has caused my clitoris hood to fuse. Naturally this is really not helping things between Darling Husband and I’m keen to have it fixed!
I’ve read that this can be surgically corrected, and was wondering if any Bees know of doctors I could contact who do this operation? I’m from the UK, but am willing to travel if necessary.
Post # 2
I have never heard of this. Have you asked your GP for a referral to a gynocologist?
Post # 3
I have heard of this before, but I don’t code it (I’m a medical coder) very often since it’s pretty rare. From my understanding, surgery isn’t really recommended for women as it can often come back and the most common treatment is topical corticosteriods. Anyway, you should speak to your GP and see what their recommendation is.
Post # 4
I am very familiar with this disease, because I have Lichen Planus (related, but not the same). I was actually misdiagnosed with Lichen Sclerosis for over a year, so I have been through treatment for that.
I am in California, so I can’t really give you any recommendations for Drs in your area. However I can give you a few pieces of advice:
1. Skip the GP and find a reputable specialist with experience in vulvar dermatology/pathology. Honestly general doctors do not have very much training with skin conditions and you need to see someone who focuses on your specific issue. NOT a general dermatologist. Not a gynecologist. A vulvovaginal disease specialist. Yes, the most common treatment is topical steriods, but GPs will normally give you something weaker than what a derm will (i.e. betamethasone valerate instead of clobetasol). Specialized pathologists are also well-versed in oral medications, like immunosuppressants, antimalarials, and short courses of oral steroids that can help depending on your specific case. In your area, this might be a good place to start:
2. I don’t mean to scare you, but this disease can cause permanent damage to your anatomy. I’m not sure how aggressive your case is but it is so so crucial for you to recieve prompt and effective treatment to prevent further fusing. Yes, you can correct with surgery to a certain degree but if the underlying issue isn’t addressed your fusing will continue and possibly be even more aggravated by surgical trauma. Most surgeons won’t operate if your disease is still active (unless it is blocking your urethra in which case it’s a medical necessity). Focus on achieving remission before you look into surgery.
3. There is an excellent support group on Facebook: “Lichen Sclerosis/Sclerosus – A Five Star LS Support Group.” Definitely join if you are on FB! Lots of useful information from the community and helpful articles as well.
4. Watch this video by Dr. Andrew Goldstein (he specializes in LS). It’s very comprehensive and encouraging. Warning: It is graphic.
Message me if you have any other questions! I went through so much battling this condition and was in a deep depression. I’m happy to say I’m in remission now and my husband and I have no problems being intimate.
Post # 5
Thanks so much for writing such detailed advice, I really appreciate it! Fortunately I think my fusing is stable – it happened within a month or two of my stopping the birth control pill 2 years ago, and hasn’t got worse since then. The Andrew Goldstein video and Facebook group look interesting, and I’ll definitely look into seeing a disease specialist.
I’m very glad to hear that things have improved for you and wish you all the best:)