Lichen Schelotis

I have a friend with Hashimotos who suffers from lichen Schelotis.  She hasbeen told that many women who have Hypothyroidism also suffer from this condition.  She has also been told that there is no cure.  Can anyone in this community advise how to treat this debilitating condition?

[Clutter]

Mongolia1,

Posts on Lichen Sclerosis in healthunlocked.com/search/l...

Information & treatment in google.co.uk/search?q=liche...

[galathea]

Lichen sclerosus is auto immune and the docs dont seem very clued up on treatment or halting it.    At least not in my experience.....

Usual treatment is with steroid ointment  to try and contain flare ups,   Washing   With dermol 500 anti microbial  emolliant, and using moisturisers...  Ones containing urea are good,   Ones like hydromol.

Because the skin gets fragile, it loses the ability to stretch and instead just tears....   Its not great news and sex can be a problem.....  As, apparantly can going to the loo eventually......    Judicious use of lubricants is supposed to help.....

Its crap and your friend has my sympathy.

G xx

[MrsRaven in reply to galathea]

I have atypical lichen planus on the roof of my mouth. And I used to get it on the lower lip, with striations. It began when I had shingles, nearly 4 years ago. It can get extremely painful, and flares up with stress and when my thyroid gets out of balance. Its being monitored by the dental hospital. The consultant has given me a steroid gel to use if it gets bad, but he wont use preds because of my thyroid. I rarely use the gel. 

[rsae56]

I have had Lichen Sclerosis verified by biopsy 6 years ago. 

The last 4.5 months I'm treated with LDN for fibromyalgia. As a side prize I see my lichen sclerosis is healing up. I have it genitalic and on my chest. There is a distinct reduction in the affected areas. I'm so happy for it!

[galathea in reply to rsae56]

Ooh, that's useful to know....  Is the LDN orescribed or self bought,   What sirt of dose?    

Xx g

[rsae56 in reply to galathea]

It's a prescription drug. You can read about it at lowdosenaltrexone.org 

ldnresearchtrust.org

[spongecat]

Hi!

I have lichen sclerosus and the steroid ointment used is clobetasol propionate (marketed as Dermovate in the UK). It is a strong steroid and should be spread on the area affected sparingly.

Initially on diagnosis I had to use this ointment for 2 weeks and now I only apply it if I have a flare up which is around once a month or so when it can be very itchy.

Don't use normal soap "down there" when washing. I like Dermol Wash emollient to wash and you can also use it as a topical moisturiser as it has no perfumes or other irritant chemicals in it.

I've also changed my washing powder to non-bio. That has made a massive difference to the generally all over itching I sometimes get which I think is an auto-immune thing too. It washes clothing just as well.

Yes it can play havoc with your sex life and I'm afraid mine is pretty much out of the window anyway but I have a very supportive partner.

[Hidden]

I had this diagnosis since losing copious amounts of skin from my vulva and inside my vagina. In my case I don't think it ever was. Now my daughter who has hypothyroidism and interstitial cystitis like me has had the same diagnosis. It's definitely autoimmune with us. Women with interstitial cystitis often get problems with their genitals being sore and painful too. What I did, and mine was so bad I couldn't wear trousers for a full two years, I used E45 Wash to wash my genitals, and finished up with E45 cream, which calmed things down and stopped all the rubbing and making thhigs worse. I looked like I'd been soaked in vinegar overnight, the whole area was white and the skin just literally came off in my hands before thos treatment. No doubt having treatment for my bladder and more recently for my thyroid has helped. I have extremely sensitive skin, but I have been using both of these products several times a day since 1998, with no bad reaction. I had been given steroid cream, but it burnt so badly I couldn't sleep. I'm lucky to have a bidet to sit in cold water when necessary!

Just to add, my daughter is now using E45 Wash and cream and she is so much better.

[Hidden]

 I have lichen schlorosis ( however you spell it.) My fanny doctor told me it is common in hypothyroid women. I use dermavate cream when ichy and emulsifying ointment to wash with which is very moisurising. My fanny is however often like a dried prune thats ichy.

Important to have regular cheakups about every 6 months as it can become cancerous. I have found a vulva specialist at a local STD clinic who takes it seriously and has a look at me regularily

[Z_oo72]

Lichen Sclerosis.

What an absolute nightmare. I have lived with this condition for over twenty years. It has been a challenge at times for sure. Sex and periods are hell on earth for me at times. Having to show my body to all and sundry never gets any easier and sometimes i have felt totally violated by medical staff and students. Ugh!

I used to have flare ups that lasted for weeks, it burned and itched, it hurt to walk and pee, my skin split and raged ... ultimately, it drove me almost insane. This happened all the way through my Twenties and Thirties. My lifestyle was hectic though, i drank and smoked and danced and took drugs and had an absolute blast but my system was toxic and i suffered deeply for my sins.

Then by chance, i met a sexual health doctor through a friend, she recommended me to this clinic where she worked as a junior doctor.

 royalfree.nhs.uk/services/s...

She told me to see Dr. Mazon. He is a specialist in skin conditions with a specialist interest for Lichen S... obviously, LS is NOT a sexual health disease but an autoimmune situation. I also have Fibromyalgia, am hypo thyroid and have CFS.

 Within months, my life was turned around. He is amazing, open and frank. His staffs are lovely and very helpful.

 I did not need a referral from my GP.

He started me on Dermovate cream and hydrocortisone cream. This was progress as all the other doctors i saw did not have a clue about what was going on.

Lately though, my symptoms have halted. I believe this to be because i have been taking Levothyroxine for two years. Dr. Mazon is genuinely surprised and says i am lucky with the turn around. I’m currently taking 150mg but am under medicated and am due to see the Endo at some point in April.

It’s not easy for sure. Anyone out there suffering from this condition needs proper care and attention but also it is about self management. Lifestyle, diet changes and exercise to increase blood flow etc.

I bought a vibrator, it helps believe it or not. Just for stimulation rather than penetration – as obviously, this is quite difficult at times. I honestly know and understand as i have been through it all.

‘Light’ Masturbation actually helps with circulation (if the area is not sore and it is recommended to use olive oil to lube up) Sorry to be direct and graphic here, i really don’t mean to offend anyone. I am a very open and direct person. I feel it’s pointless to beat around the bush as it were, when discussing such matters.

If anyone out there is suffering with this and can get to London, i seriously recommend checking this doctor out. Obviously , everyone is different, i just know seeing dr. Mazon has really saved me.

All the best to you all xx

[Agapanthus]

I have Lichen Planus which started some 10 years ago now on my body, and then when that healed, in my mouth where I still have it. I find that stress, and eating sugar make it worse, and mostly I can keep it under control. I also eat gluten free but not sure if that would affect it.

I feel for people who have LP  or Lichen Sclerosus in the genital area as the pain must be a lot worse. It is interesting that when my LP started I had an annual TSH test and it had gone up above the normal range, whereas usually it was fairly stable, (I already had the hypothyroid diagnosis), so it did indicate a connection, and I have been told that LP is considered auto immune.

I think it's well worth trying LDN but unfortunately I was unable to tolerate it for various reasons.

[rsae56 in reply to Agapanthus]

Problems with tolerating LDN usually is due to starting at a too high dose or increasing too fast. It is recommended to start at 0.5 mg and increase with 0.5 mg every 2-3-4 weeks depending on how sensitive you are to the drug. 

Side effect are usually of short duration and easy. It is worth giving it another try

[Agapanthus in reply to rsae56]

Thanks rsae56. Unfortunately I had more than one issue going on in the end with LDN. I have now got diagnosed Functional Dyspepsia, and it created a kind of burning ulcer type feeling in my stomach on even the smallest dose. I could maybe have countered that with using a PPI but didn't want to use them long term if I could help it. The aftereffects of just one drop (I tried the sublingual version after the original one) would last for a week, and the pain was unbearable.

I also had  a severe reaction neurologically which caused me to keep jumping awake repeatedly. It was so bad that it disrupted my sleep for weeks afterwards and caused migraine. It is true that I could maybe have managed that ultimately by using a tiny dose but with the other side effect also I wasn't willing to risk it.

[rsae56 in reply to Agapanthus]

Sorry to hear that!

 I know that some are extremely sensitive to medication and start at a ultra low dose of naltrexone ULDN. 

Hope you find help to get better