Thyroid UK
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lichen sclerosus and hypothyroid

Hello folks, I am posting this because I have just been diagnosed with LS and apparently 50% of LS patients are also hypothyroid, as I am. It is thought to be another auto-immune issue. I had never heard of the condition and so didn't realise my symptoms were LS. I want to spread the word so that people know what to keep an eye out for.

It is nasty and can be doing its work on your vulva, Labia and clitoris without you being aware. Men can also have this condition on their dick but it is a bit easier for them to see what is going on and get some help (sorry folks, no point in beating about the bush, LOL). If I remember rightly, the webcast I saw said that pre-pubertal and post menapausal women get the itching. Anyone who is still ovulating can have the condition but are less likely to get diagnosed as no itching and they may not go to the Dr with their painful intercourse.

Symptoms can be itching around vulval area (unless you still ovulate) your pee can irritate the skin, painful intercourse, reduced clitoral sensation and visually, little white shiny spots and skin changes in the area, white, papery skin that tears easily. Odd pains in the vaginal area are also possible and a heightened sensitivity of the clitoris due to it being grown over. Can spread round to the anus too. It can cause the labia minor to disappear, vaginal opening to narrow and skin to grow over the clitoris. There is NO DISCHARGE. Untreated, it can be devastating for all your bits :-) it's pretty shocking actually. A percentage of cases do turn cancerous.

There are pages on the Patient website which outline the treatment protocol which your GP should follow but the most useful info is a long webcast from an American specialist, which pretty much lays it out there. At 11 minutes he gets into the sort of physical changes that can be caused by LS. It is graphic. The webcast is called 'Lichen Sclerosus: The Unspoken Pain'.

I hope that this is helpful

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that wasn't supposed to be a smiley face :-(

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Thanks for posting ....

[Patient.info] "What causes lichen sclerosus?

The cause is not known. There is a type of inflammation within affected skin which causes changes to the structure of the affected skin. It is not clear why this happens.

The cause is possibly an autoimmune disease. When this occurs, the body's immune system accidentally attacks your own body. This causes inflammation and damage to the affected part of the body. In people with lichen sclerosus the genital area of skin may be attacked by some parts of the immune system which then causes inflammation. However, this has not been proved and it is not really known what triggers lichen sclerosus to develop.

About 1 in 4 people with lichen sclerosus have another autoimmune disease such as thyroid disease, vitiligo, or pernicious anaemia. This is why it is thought that lichen sclerosus might be an autoimmune disease".

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You have my sympathy sue_b .

I've got this as part of my autoimmune "party pack" too :(

Dermovate is my friend when it flares badly. Unfortunately dermovate being a strong steroid also makes the fragile skin even thinner too. When the symptoms are settled I use Dermol Wash emollient cream to wash and also to use as a moisturiser. The skin gets so dry, that's when the itching starts and hey-ho off we go again. All clothes are washed in non-bio soap powder.

I'm afraid I'm ruined "down there". Poor hubby is very sympathetic, bless him but any conjugal stuff is right out of the window, physically impossible. Around 5 years ago I went for a pap smear, the nurse had to get one of the GP's in because it was so painful. They sent me away with some Vagifem which didn't make it any better and I still howled. Fast forward to last year and another smear performed by the GP who diagnosed the LS and I uttered such foul curses that the sky turned black and it rained toads outside!

I seriously am thinking of forgoing the pap smears in the future. I know that's stupid but really...that's how much it hurt. :(

Apologies if it's TMI folks.

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Hi spongecat, poor you, that sounds horrendous. I take it that means you didn't get a diagnosis for a long time? What has happened to you is exactly why I wanted to spread the word. In my own case it is not to far advanced so I should be able to avoid most of the issues you are taking about, I hope.

Are you being overseen by a dermatologist or a gynae Dr? Have you seen the webcast I talk about in my first post? There are surgeries that can be done to make things more normal. I have been on the forum on 'Patient' and there are folk on there who are using 'borax' in solution, applied to the skin and they say that keeps everything hunky dory, no steroids needed. I plan to stick to the steroids until the visual signs are gone, at least and then decide what to do. If you want to PM about this, please go ahead.

very best wishes sue_b

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Hi sue_b Thank you for your kind words. Yes I will look at that webcast.

I'm afraid the way it escalated was mostly by my own doing.

Before I retired my job would quite literally take me all over the world. I spent an awful lot of time "on the road" with not much time at home and I should have got it sorted much earlier but when you are home for a couple of days and the itching had stopped or whatever and at that time I was peri-menopause and thought all the symptoms were down to that the notion of going to the GP was put on the back burner. What a fool I was! The only thing I did was buy OTC Canestan as I have been rather prone to candida throughout my life. As you say in your first post not having discharge should have been a big clue that it wasn't candida. I also have a retroverted uterus (just to add a cherry on top of things :D ) which makes all things with speculums involved absolutely ghastly. As the GP said whilst I was doing my imitation of Linda Blair in The Exorcist, she said it was bit like playing Hunt the Cervix. Barrel of laughs...not!

I have not seen a gynae about this. One of the GP's at my surgery has a great interest in dermatology-type things so she has given me advice on what to look out for in regards to anything potentially dangerous happening.

I have heard of people having reconstructive surgery but that's not for me, my libido is pretty zilch anyway and was something very closely discussed with other half and he is pretty much in the same boat as he has had cancer and various other conditions that make rumpy a thing of the past but we do have a very loving a relationship full of cuddles and laughter.

The borax solution thing looks interesting.

I wish you luck Sue and that things will be OK for you. :)

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😭 ehhhh awfull.

Have lichen planus but thats in ya mouth .

Other end .was told years ago it was part of r/a .poor you x

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I developed LS nearly two years ago. It was constantly flaring or on the edge of flaring even with the steroid which I used as sparingly as possible. Actually it was LS and the prospect of more AI conditions (Ive been hypothyroid for 12 years) that propelled me into trying to reverse everything. I have been treating myself with T3/T4 since March. I have had no LS symptoms since April. Also I pursuaded the gynae to prescribe dermasilk pants which I found stopped itching at night and helped stave off attacks I think. I use very few toiletries at all now (a revelation - you dont need them!). I still use coconut oil or sudocrem everyday on my vulva and perineum. Good luck!

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Oh I like the look of those Dermasilk products. The little shorts might be perfect for night time when the itching is always at its worst. :)

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Thats what I found, particularly if caught early....I showed my gynae research articles about dermasilk and she was willing to give it a go......good luck!

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me too :-)

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Hi Valarie, thank for your post and great to hear that something is working for you. I have been using NDT for 2.5 yrs now. I think that my LS has developed during this time but may have been around before I switched from Levothyroxine.

I have been careful with toiletries and detergents for years now and we have large tubs of coconut oil that get used for all sorts of things but I haven't used it as a 'down there' moisturiser. It is anti-microbial isn't it? sounds like a great idea :-) I currently use aqueous cream to wash as it is so soothing but I think a follow up with coconut oil can only help.

Thank you hun :-)

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Hope it gets better very soon 😊

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Forgot to ask if you are gluten free? I went GF last autumn - dont honestly know what worked but certainly my antibodies reduced in the interim

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Just been tested for Celiac diesease and pernicious anemia but I don't think I have either. I have had phases of being gluten free but now there are so many new products that I can buy when I am being lazy it is going to be much easier to stick to. In the past I have found that chronic ankle swelling went away when I did a vegan detox( no wheat, alcohol or coffee either). it was amazing but my body doesn't respond the same way these days.

I am about to start taking Milk Thistle to see if helping my liver will help overall.

Also, checking out low dose naltrexone which looks promising for auto-immune conditions.

:-)

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