Lichen Sclerosis

[Thistlelass]

So I at the upper age bracket of the Mums on here I guess. I have to see a gynaecologist next week and am expecting to be diagnosed with this autoimmune disease which affects the genital/vulva area. Men can develop it, as can children and younger women. The large majority will be post menopausal women. I already have vaginal atrophy for which I use vagirux. LS can cause itching ( which alerted me to the fact something was wrong). It can cause the skin to thin, rip and tear - during sex etc). Scar tissue can develop and the vaginal and anal openings etc can narrow to a point where surgery may be required. The skin in that area can lose its' pigmentation.
In many years of working with people who were unwell in lots of different ways, I had never heard of this. It does not appear to be in the public domain. I am therefore just really posting this to help increase public awareness.

[IMustDoMoreExercise]

Thanks. I have only heard of it from posts on MN.

[Thistlelass]

Well this is it. Really something all of us should know about in order treatment can begin asap! Especially due to the small risk of vulvar cancer developing. And who wants their daughter of any age, but especially a child to go through it? I guess little boys could develop it also.

[khaa2091]

Lots of information at
https://www.rcog.org.uk/for-the-public/browse-all-patient-information-leaflets/skin-conditions-of-the-vulva-patient-information-leaflet/

[AloneAgain2023]

@Thistlelass Although this post is a few weeks old, it caught my eye due to me having Lichen Sclerosis. I have had autoimmune issues (overactive thyroid a couple of years ago) and I understand LS is also an autoimmune issue.

When it was first spotted I was given Betnovate ointment for any soreness which helped. My problem is that, as you mentioned, the skin became thin and tears easily with sex, and even my last smear test caused it to rip and sting. The sex problem really became a problem, I didn’t want penetrative sex because of it (even lots of lube didn’t help), and just wanted to stick to doing everything else!

I’m now getting divorced, unfortunately my stbxh wasn’t understanding enough about the pain it caused and thought I should look into doing something drastic to fix it - he was genuinely surprised that I wasn’t rushing out to get a skin graft! There were other reasons for the separation of course but that was a big reason.

Although it’s the last thing on my mind right now, it’s rather depressing to think that if I do ever want to date again, it will always be an issue. My not-so-sensitive stbxh even told me I will find it a problem as all men are going to want to have sex! He may well be right.

Did you get any kind of resolve with your appointment? I really don’t want to have to go down the surgery route, particularly as it doesn’t cause me problems otherwise.

Any advice?

[Thistlelass]

Oh the appointment went quite well. I have been prescribed a steroid ointment and a moisturiser. Go back in 3 weeks time to have a biopsy. Consultant I guess wants to make sure there is definitely no cancer at this time. Not presently in a relationship so I cannot comment on the sex. Maybe you should be referred to a gynaecologist also.

[IMustDoMoreExercise]

Thanks for the update OP.

Really hope the steroid cream works.