Lichen Sclerosus: The Silent Genital Health Concern Often Missed

[RedApple]

This article fails to mention that LS seems to be more common in people with autoimmune thyroid disease.

But it does point out that LS isn't just a female problem.

Lichen Sclerosus: The Silent Genital Health Concern Often Missed

medscape.com/viewarticle/li...

[humanbean]

This is an additional source of information for LS.

dermnetnz.org/topics/lichen...

[Regenallotment in reply to humanbean]

Thanks for this, very informative

[J972]

Regenallotment

[Regenallotment in reply to J972]

Thanks for the tag 🙏🌱

[Trill]

How alarming! Mine is a dry patch near the cervix but the article describes only vulval? Horrible to read about the risks and most interesting that it connects it as likely to be associated with tyhroid problems. My GP just left it to me to self-treat. No follow-up check.

[Farrugia in reply to Trill]

Have you been diagnosed with LS? I think in women it most commonly affects the vulva, there is another condition called Lichen Planus which can affect inside the vagina I think, I'm not an expert but I have LS and have read a lot. There is a wonderful Facebook group called Lichen sclerosus- sclerosis -UK support group for women. It's very supportive, loads of info and is very well moderated. The international group is not nearly as good. If your GP thinks you have it you should be referred to a specialist, either gynae or dermatologist. Unfortunately you have to keep pushing for good treatment and check ups.

[Jasper79]

Interesting.

I have it (I am male). After having it for some years, being a real problem intermittently, I diagnosed it via google and the NZ link quoted by humanbean below. I then paid for a private dermatologist consultation to get it accepted by my GP surgery.

I will cross check the dates against my thyroid diagnosis.

I had no idea of the link to thyroid issues.

[Farrugia]

I have LS and was diagnosed around the same time I was diagnosed with Hashimoto's. They both got really bad at about the same time - just after menopause. 18 months ago I switched from Levo to NDT and my LS improved a lot. It seemed to improve with better levels of T3. 6 months ago I reduced my NDT because of shakiness and palpitations and my LS flared up. I've just decided to go back to the slightly higher dose of NDT, it will be interesting to see if my LS improves. It will be a massive relief if it does!

[digiart in reply to Farrugia]

There has been one study conducted - where Dupixent (dupilumab) has been shown to be effective for treating LS. (Dupixent is used to treat people who have eczema.) It is so far, one and only one study. It needs to be replicated. However... if the Dupixent study can be replicated and confirmed... that is a huge hope on the horizon.

[RedApple Administrator in reply to digiart]

Do you have a link to the study paper please?

[digiart in reply to RedApple]

Here it is: frontiersin.org/journals/me...

Efficacy of dupilumab in the treatment of severe vulvar pruritus associated with lichen sclerosus et atrophicus: a case repor

Note ~ i am not a medical professional and cannot understand it. I basically asked AI (Gemini) some questions about it, to help me understand. And according to AI, Frontiers in Medicine is a reputable journal.

My dad also uses Dupixent for eczema and it has helped while nothing else has.

I hope more research is done here and that it the results will go in a positive and hopeful direction.

[RedApple Administrator in reply to digiart]

Thank you 😊 As this forum is for 'patient to patient' support, we don't expect you to be a medical professional, nor to fully understand papers. But it's always good to have links so that others can read, and maybe even show to their medical professionals if they wish to.

[digiart in reply to RedApple]

Right. Another quick comment as I read. It is topical steroid use where there is a trade-off. You are exchanging skin thinning from potential steroid overuse with the various LS symptoms.

Dupixent is not a steroid. It is a biologic. It targets parts of the immune system involved in inflammation. It does not have steroidal side-effects. It should not result in skin thinning and should have fewer side effects than topical steroids.

I know that the above study is just one case and it needs to be replicated. But I really hope it can be.