Lichen Sclerosus: The Silent Genital Health Con... - Thyroid UK

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Lichen Sclerosus: The Silent Genital Health Concern Often Missed

RedApple profile image
RedAppleAdministrator
13 Replies

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...

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RedApple profile image
RedApple
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13 Replies
humanbean profile image
humanbean

This is an additional source of information for LS.

dermnetnz.org/topics/lichen...

Regenallotment profile image
RegenallotmentAmbassador in reply tohumanbean

Thanks for this, very informative

J972 profile image
J972

Regenallotment

Regenallotment profile image
RegenallotmentAmbassador in reply toJ972

Thanks for the tag 🙏🌱

Trill profile image
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 profile image
Farrugia in reply toTrill

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 profile image
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 profile image
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 profile image
digiart in reply toFarrugia

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 profile image
RedAppleAdministrator in reply todigiart

Do you have a link to the study paper please?

digiart profile image
digiart in reply toRedApple

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 profile image
RedAppleAdministrator in reply todigiart

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 profile image
digiart in reply toRedApple

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.

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