Lichen Sclerosis and Thyroid problems

Morning Ladies, Hope you all had a good night's sleep?? I can't thank you all enough for your advice & support, it is such a help to us "newbies" .

Horses, you mentioned about your hair falling out also & possibly the weather, Mine has been like it since last year even through the winter months. I just put it down to going through the change (I'm 46) but it's because my hairdresser was fairly concerned about it that it's pricked my conscience, but i'll get it checked out in case, I have always had really thick wavy hair & it's thinned so much this last year it's like fine fluffy baby hair now. A real dramatic change, I had noticed it but just not realised how bad, I looked at a photo from a couple of years ago & it was like "OMG" !!!! so I think it's worth getting it checked, so I will keep you posted,

Keep up the good work ladies, this site & your post's has been a real lifeline for me this last few weeks, especially this last week as I've felt so down about it, but it really has lifted me & i'm feeling so much more positive about things again now Thank you all. T xx

Hi tigger,

I am very envious that you have an advice sheet, which is just what I need. I am listening to what people on this forum are suggesting, which so far has been very helpful. My dermatologist has been very helpful, but an advice sheet with instructions would have been perfect for me. I must be doing something wrong, as I have flare-ups very regularly. Also, this time of year, there are a lot of summer parties going on with, of course, wine. Just one glass seems to have a really bad effect on the LS. I have always had a very sweet tooth, which also is not helpful. Do you have a rigid diet and stick to it? I do all the washing and moisturising, so it cannot be that!

Hi "T"

Good night's sleep?? No way! It was so hot last night and I woke up about 3 am and that was the end of my night's sleep!!

You might need to talk to someone about the hair loss, as possibly something can be done about it. I am trying to convince myself that the fact my hair is falling out is just lack of sleep and a change in the climate!! Trying to be optimistic in other words!

I find this site is a real boon as well. When I first was diagnosed with LS

Sorry, I got cut off there!! I was going tyo say when I was first diagnosed with LS, I felt my world was tumbling around me, but I am getting more used to the idea now and, selfishly, it is so nice to know there are others in the same boat.

Keep cheerful and keep cool!!

W

Hello

I know that world tumbling around me feeling, I think it's pretty common. LS can have huge physical, psychological and social impacts, and it's very easy to feel isolated isn't it. It's not that I'm not sympathetic but when someone moans at me about how life changing their carpal tunnel syndrome (or similar) is and I get a blow by blow description of their symptoms I glaze over. I can hardly reciprocate can I? I can imagine a very embarrassed swift exit! It's not something you can talk about except with other sufferers and that's really difficult.

In fact there was a mum in my NCT group who was diagnosed first with Herpes and then changed to genital exczema, thinking back I wonder if it was LS. We lost touch. If you are reading this, you'll know who you are, and I am a fellow sufferer too!

I get a lot of advice from a website called comfyskin, specifically set up by an LS sufferer. It's been really helpful in the light of my GP not really understanding the condition. Everyone posts what their specialists say, but there's a basic routine and set of products the moderator lists out clearly with a how and when. I've found it really helpful. Especially the advice not to be afraid of the steroid - it is your friend! it has made a huge difference to me. My doc said 1 month then try to reduce it. When I finally persuaded her to refer me the specialist said you have to use it daily for 6 months to stop the progression.

Gotta go, sorry, time's run away with me. Will come back tomorrow.

Good luck all. I'll keep visiting now that I've remembered my password!

Enjoy the sunshine

Hello all - sorry I feel I've been out of the loop - I've been enjoying having my daughter home for a week - it's helped diffuse the tension so a welcome relief.

Anyway - enough of that. There is so much info on here - thank you all!

LS sufferer (T?) - you should definitely get your thyroid checked. Mine started as Graves Disease (extremely over-active thyroid) about five years ago - sweating, weight loss, sleeplessness, goitre, then the thyroid became under-active after radioactive iodine treatment which led to weight gain, sleepiness, lethargy, hair loss and all the other joys an autoimmune condition brings - culminating in this recent LS diagnosis. I am so lucky I have an excellent GP but wish I'd gone to her and insisted in an examination when I first started having problems over a year ago instead of continually treating it as thrush.

Tigger123 - is there anyway we can access on line the help sheet you got from the Vulval Dermatologist?

I have paid to see a consultant and basically he has told me to use the dermovate whenever I need it, to use Sylk lube for sex (fat chance of that atm) and to be vigilant - checking it.

Mustn't use any soap, shampoo etc in shower -is there anything out there which is soap free as a shower gel?

I might need to have an episiotomy type op in six months urgh but I'm hoping not. However, marital bliss is non existent until I can try to get the LS under control - sigh - wish me luck ladies! !

Take care all - thank you for this - and best of luck to those who have doc appts soon - keep us posted.

DLB xx

Hi Bridge of Sighs,

I will definitely try to find this Comfyskin site, as I definitely worry all the time about using my steroid cream, but it is really the only thing that really helps the itch, or in worse scenario, pain! How long have you had LS

Welcome back DLB - try using aqueous cream for washing. It is a little strange as there isn't much lather, but it does the job and doesn't irritate the skin. If there is anyone in this group who is having sex and enjoying it, please let us know! I do wish you luck DLB and nice to hear your comments.

W XX

Hi Horses

This is the routine they recommend and it seems to be working for me too;

At night use steroid followed by Emu oil which is very hydrating and helps it soak in. Some Emu oils are better than others so make sure it's tripple refined if you buy any.

In the morning use a barrier cream - they recommend Paladin which they import from the USA, but I am experimenting with others as there MUST be something that works well that you can buy here too. Having said that I did buy some and it does stay on longer than anything else I've tried. All natural, no perfumes.

My Homeopath recommends using Weleda Calendula Nappy cream as she says it's healing as well as a barrier. I am trying it out at the moment. Initially it doesn't seem as protective but I'm going to give it a bit longer.

From the Doc I've got Dermol 500 in a pump dispenser to wash with which is soap free. It does have some perfume in so need to make sure it is fully washed off, And Epaderm in a tub, NOT the cream/lotion. This one is a bit like vaseline. I put it on whenever I have a sore moment and it's very soothing. You can use it to wash with too, I did before I got the Dermol and it works well. It's a standard Eczema treatment. You may be able to get it over the counter.

I got diagnosed last year after changing doctors when we moved house. My previous doctor fobbed me off for two years before finally deciding I was a hypochondriac and snapping at me to get on with it! A common story it appears.

Horses do try Comfyskin, it's such a relief to be able to share and ask anything. Some people have had ops or travelled abroad for treatment and it's good to know that there's information out there. How long have you had it?

And hi DLB, I know what you mean about marital bliss, a distant memory over here. Luckily I've got a very patient and generous partner but I do feel guilty as if I'm failing him somehow. But it's hard to feel up to anything when you're physically and emotionally in shreds isn't it? All part of the 'guilt soup' scenario, little bits of things floating around in the stuff of life! I wish I was one of those black or white type of people, but I'm not.

Oops that was random. It's a hot day and my brain's fried.

But isn't it lovely to wear lightweight clothes at last?

Good luck to everyone XX

Thank you very much for all the information, which I am currently printing so that I can compare notes. Quite a few people have now mentioned a vaseline-type ointment, so perhaps this is very important to improve the condition! I have loads of emu oil, the purest type, which I had abandoned as it is so slippery. However, I was always convinced that it had healing qualities so I will go back to using it again, after the steroid! I have my own barrier cream, recommended by my dermo, so there is no point in duplicating this. I could easily open a chemist, with all the creams and ointments I have acquired these last months!

Why do you use Dermol 500 if it has perfume in it. I wash with aqueous which seems to do the trick.

Both my children have gone off on holiday today, so I will have plenty of time now to concentrate on myself, which I have not been able to do lately.

I am very anxious to try Comfyskin and learn as much as I can.

I know what you mean about guilt trip. I feel I am a bad wife, but it is too painful to contemplate. I realise how lucky I am to have an understanding and compassionate husband. That door is closed I do believe, but it makes me very sad at times.

I am not exactly a sun worshipper and find this heat overwhelming. I am definitely a Winter person. Just the idea of snowmen and log fires can quickly make me smile in pure joy. I had air conditioning installed a few years ago and was devastated last night, when it ground to a halt. Disaster!!

Many, many thanks and I will let you know, when I contact Comfyskin!!

W

Bridge of Sighs

Thank you so VERY MUCH for the info you posted today, I was told by my GP that I could used the Dermol 500 as a moisturiser, as often as I want to and to leave it on.......I was using the Dermovate for the 2 raw patches I have and using the Dermol 500 on the "lips" After a few hours I was always red and sore.........After reading your info, I immediately went and washed it all off. That was a couple of hours ago and it has started to calm down.........I am still waiting for an appointment to a Vulva clinic, albeit I am not sure one exists where I live, so I only have the comments from the members of this site to guide me, My GP knows less than I do about this condition. So thanks again Ladiesl

L X

Hi folks

Quick response as my kids are around and they have the annoying habit of looking over my shoulder as we only have one open plan room.

Dermol 500 is really good at washing off the really tough all-day barrier creams which is why I use it. I was using it when I was sore, thinking it was a soothing thing (also as told by my doc), but Epaderm is much better for that job.

I'm only around for another week and then packing up the house and computer for building work so won't be around. Will be using library for internet, so won't do anything too personal. Back after the summer. Any questions, get them in quick, but am only repeating stuff I've learned from other site anyway.

Snowmen and log fires - how lovely. Yes agree that heat is overwhelming, but enjoying simple clothes and not loads of layers.

Sighs

Hi Bridge of Sighs,

When you say " the really tough all day barrier creams do you mean that you use Epaderm as your all day barrier cream, or do you use something ?

I am enjoying this weather as when I am at home, I am wearing a sundress only, nothing underneath in the hope that the fresh air will help!!!!

Thanks again. Xx

Hi Lorna 65

At the moment I'm experimenting with barrier creams. The Paladin is really tough and stays on, so the Dermol washes it off well. When I use Epaderm I put it on in the morning and then if I feel a bit sore, put it on again later and it seems to soothe really well, but I suppose it means that it doesn't stay on all day. The Weleda seems comfy but in this weather, with lightweight clothes, I'm feeling more comfortable anyway so don't really know if it's a fair test. Between the three I usually find a balance for however I'm feeling.

I was originally given the Epaderm for washing, but it's so good at soothing that I'm saving it for that instead, and it all gets expensive too, even on prescription, so I'm reluctant to waste anything.

It's all trial and error and we're all different, but this is what works for me.

Good Luck, and hope you get to feel more comfortable soon.

Hi everyone

I posted at the start of this discussion about the link between hypo-thyroidism and LS which now seems all too evident to me! I was diagnosed with thyroid problems 8 years ago after I suddenly found I couldn't keep up my fitness regime on my exercise bike! Then I started to fall asleep at odd times. All was returned to normal after a visit to the GP and Thyroxine and I thought no more of it until 2 years ago when I started getting strange auto-immune problems like warts (which I've never had in my life), bouts of acute sickness/diiaorrhea every few months or so, each time decreasing in intensity until now I don't have them, similar bouts of what seemed like vulval herpes which also decreased in intensity until now I don't have any. Then, last year I developed LS which was eventually treated by a sympathetic dermatologist (to cut a long story short!)

After joining the Lichen Sclerosis discussion site and gleaning a lot of helpful advice - they really are life-savers, bless them - I now seem to have it under control, simply by the following:

It is ultra important to use the steroid cream until you have no symptoms (if that means everyday for 6 months then so be it). Only use a pea-size amount each time. You would have to use something like a tube a fortnight to do any damage. THEN, start reducing the amount extremely slowly, either by using a tiny smear, or perhaps to once a day, then every two days etc. This will take even a couple of months. DO NOT stop suddenly or it will return with a vengeance! You may get 'flare-ups' every now and again, especially when stressed then you have to start again! There is no shortcut. Eventually you should be on a permanent regime of about Twice a week. Remember, everyone is different. In America, many people are prescribed Estrace which is a mixture of Oestrogen and Testosterone cream which is supposed to restore architecture and suppleness. It is not done in the UK,although oestrogen cream or pessaries are helpful. In between - always use an oil or cream, such as emu oil, coconut oil, find one that suits you and always wash away any trace of urine, or blot dry. I find vitamin E capsules, broken open are very beneficial. You will probably find oranges, or coffee will irritate the LS (sob!) and some people have given up wheat or dairy to good effect. All this is a hard slog, but well worth it in the end, and if you are patient, marital relations can resume as normal, so the message is KEEP AT IT! As long as LS is kept at bay like this, there is a minimal risk of scarring or cancer, which only occurs if left untreated - SO DO NOT BE AFRAID OF USING STEROID!

There are lots of hints and tips on the Lichen Sclerosis site on Yahoo.

Good luck all! LS is a truly horrible disease, but it really can be beaten.

Annieflipflop

Hi Annie,

I find that reading a lot on the LS sites can be quite depressing but, the more anxious I am, the more I tend to search the sites to learn more about this ghastly disease. I am going to take your excellent advice and do a six months course of steroids and really try to get rid of it. You are quite right, I think the only way I am going to diminish this thing is to go at it full tilt. I drink decaf, which is probably as bad as the real thing and I have managed to give up oranges completely (I used to eat 2 or 3 per day), but it seems that everything I love to eat and drink is a no-no!!

THANK YOU.

Horses

Hello Horses

So glad you are going to persevere with the steroids. It really is worth taking the time.

I agree with you that it always seems to be the things you like best that cause the problems (sigh!). I thought I'd give myself a treat last week and had a lovely cup of coffee after 2 months. It didn't take long for its revenge and by the evening I felt the familiar signs! I am also trying to give up wheat too to see if there is any difference.

Good luck with it all and never give up - it is so worth it .

annie