Lichen Sclerosis and Thyroid problems

Hi everyone, I have hypothyroidism and LS.  The hypothyroidism was diagnosed when I was in my 40s and LS when I was about 55.  I had no idea that there was any connection.  I went to a female GP as Canestan was repeatedly given to me and it didn’t help at all.  I had phoned the genito-urinary clinic and asked what it might be and a nurse said it could be LS.  The female GP ignored my suggestion that it could be LS and gave me more Canestan.  After that I put up with it for about a year until it became so sore that I couldn’t ignore it any longer.

Then I saw a male GP who referred me to the genito-urinary clinic, where it was finally diagnosed.  I had it photographed by a male photographer, I don’t know who was most embarrassed, him or me as it was vulval and anal.  I read that it should be reviewed every year, but I haven’t had an annual review yet and I’m now 65.  How many people like me are left to just get on with it?

I’ve tried emu oil and it does help a little, but I do worry about using steroid cream, so probably don’t use it as much as I should.  I may try “Crisco” and see if that is any better.  It seems that not many of the medical profession realise how painful it can be and I’ve had bladder examinations where it has felt as though I have been very roughly treated although I have explained that I have LS and the skin is very delicate and sore.

I hope that doctors show more concern for this condition and about a year ago I read that there was some promising new treatand relments abroad which were giving a lot of relief, but not here.Good luck to everyone on here and let’s hope for more enlightenment and relief soon.

Hi Annie,

I too, am a LS patient and 69 years old. My story is similiar to yours. Numerous trips to doctors over the years for urine infections, vaginitis etc etc. Neither of my General Practioner MD's knew what my complaint was until one day, I went to a dermatologist to have a black mole removed from underneath my left breast. The specialist knew what it was but told me he would rather wait until the biopsy report came back. In less that 10 days he called me in and told me I had LS. I was shocked, thinking of MS, as I had never heard of the LIchen type. Before I left his office, he said something to the effect that maybe I should see a Gynecologist if I had any problems in the genital area. When I told him that I did indeed and for years, he got me a good Gynecologist. I was then treated with Clobetasol cream. That was 10 years ago. Since then the LS has progressed to all parts of my body from the thighs to my underarms and forearms. I get some terrrible flare-ups that seem to just treat my skin like I was dipped in hot fat or acid! It is a terrible disease. No one seems to know much about it. I have 3 specialists who treat different areas of my body, but no one can predict when the flare ups will start or why. Personally, I notice that when some major stress comes along in my life, it does appear to worsen the LS. For instance I was rushed to hospital with a bowel blockage that was caused by scar tissue from a previous surgery. I was very ill for 24 hours. After that, my whole body broke out in blisters which joined together to make larger blisters. My life for the past 10 weeks has been one of antidepressants combined with anti-itch meds, creams and as of late Prednisone (steroids) Only relief is the prednisone, but again, that is a very harsh drug and I get severe headaches from it.

It helps to talk to other sufferers and to find that we are not alone. There is not enough information out there unless you already know about it and then can google it.

Hope that you find relief and that it does not spread like mine has.

Good luck

Sammy

Hi yes I've had LS which went in diagnosed for quite awhile but things changed last year mine turned into aggressive squamous cell carcinoma ( stage 3) I only found out 23 August 2016radical operation the 29 August.2015 So now they have found a goiter so have to look into it but be interesting see if it's related or not ! But please keep an eye on you Ls

Thank you ladies for all the information.  I can only add that I really believe that the underactive thyroid has some relationship with the LS.  I ws diagnoised about 5 years ago, never itching just soreness,  My GYN took a biopsy and it was positive.  I also have it in my mouth discovered about a year later.  I use a cleanising product to wash in the shower, also a sister product that has just come onto the market.  It is a healing vasoline like product, same brand they also make a hand wash and face cream.  My hair has become so thin you can see through it, same brand name bought only at hair salons and am tired all the time.  I use these  two products and have had wonderful success. Used clob in the beginning and then switched to this product.  Also use sensative toothpaste.  Had only one BIG flair up in these years, food poisoning, really took a few days to get back to normal,if there is a normal.  Only other thing are continuing bladder infections.  Am having another sonagram? tomorrow for thyroid again.   

Hello there such a comfort to find so many others with a condition like mine,all your information is now a year old has anyone out there anything there for this year,all informative for a newcomer like me

Hi I have an under active thyroid and LS had levitation for 16 years,to get LS a big shock 3 months ago

I was diagnosed with lichen sclerosis about three years ago and have been on medication for hypothyroidism for about ten years. Not I have developed a thyroid nodule about one-third the size of my thyroid. Not cancerous, but another thing to cause pain and discomfort. Interesting to see this connection since no one seems to know for certain what causes LS

Hi, I've been reading and reading so much about our disease,

I was diagnosed just before Christmas. 2016,

Trying to get my head round everything,

But in answer to your question,

I also have an underactive thyroid.

Since, being in my 20's,

I am now 52,

There is definitely a connection,

It's very interested,

Wishing you well ,x

Yes indeed. I've been suffering With LS for at least 6 years; had underachieving thyroid for 30 years before it was surgically removed.

Hello all,

It's very interesting reading all the posts. I have just been diagnosed with LS after suffering really badly with soreness/itchiness and general discomfort. Interestingly I was diagnosed with borderline underactive thyroid a few weeks ago. I have been started on thyroxine as my fatigue/muscle pain has been awful. I have a strong family history of autoimmune disease so I'm really hoping things will not deteriorate. My Mum has a disease called PBC so I am understandably worried about this. It's good to have on line support reading through other people's experiences.

Take care everyone.

Hazel

Hi everyone , I have had itching and soreness on my lady garden since 2012 which got triggered by emotional stress , I applied all sorts off creams and got diagnosed with eczema , dermatitis and everything but lichen scholosis, in 2015 I googled my symptoms and lichen scholosis appeared and wow it blew my mind as the forums and symptoms were exactly what I was dealing with, I took myself back too doctors and handed him a print out off lichen scholosis and said THIS IS WHAT IVE GOT !! I have had it confirmed by hospitals then denied by new family doctor but am at my wits end with it , it’s dry,cracked and red and constantly itchy (more when I’m rested) can settle down but sex or any lubrication sets it off again even weeing now sends it loopy 😡😡😡I have found germolene helps too soothe for few hours and wash in dermol but slightest stress sets it off badly 😡😡😡I hardly sleep as itch/scratch cycle drives me scatty and hate how I look down there as scarred too bits ,Im also taking x2-3 sleeping tablets at night xxx 

I have Hypothyroid (Hashimotos). I’m 42 and had Hypo for 3 years and LS for 6 months (when finally diagnosed but had both much longer!) After all my research, I believe both are autoimmune and both are as a result of Leaky Gut and exacerbated by stress.

I’ve removed gluten, wheat, dairy and eggs from my diet (after a food intolerance test) and reading various books on healing autoimmune conditions.  I’ve been trying to reduce inflammation with bone broth, herbs and a clean diet. I’ve noticed my depression has decreased and as a result my stress level has also dropped too. 

I’m pretty sure sugar is a definite trigger for a flare up as I allowed myself some over Halloween and I had almost immediate itching.

I still have a small white patch on my fourchette and use clob once in a while (using the method as instructed by Dr Goldstein) but I believe if I can heal my body and stop it attacking itself then both autoimmune conditions should hopefully go into remission. (I don’t want to use steroids if I don’t have to, but want to get rid of that pesky white patch.)

My vagina had started atrophying but I’m using a dilator to stretch the muscle. I’ve been wondering if there’s a link between orgasms and balancing hormones, as I think that may help with blood flow to the area and letting your vagina know “we’re not done with you yet!”

I’ve not had successful sex for a couple of years as too painful/tearing but would like to try for another child very soon, so going to keep massaging and a little ‘self love’ to see if that will help.

All the best,

Melanie.