Does anyone have Lichen Sclerosus?

[babartheelephant]

After many years of suffering from thrush, I was recently diagnosed with an auto-immune condition called Lichen Sclerosus (affecting the vulva). Does anyone have experience of this? I am now on a regime of Dermovate 3 times a week for 4 months with a ?biopsy at next appt in May....
Anyone got any words of wisdom?

2 of my 3 daughters have this condition. I really feel for you.

My eldest daughter is about to turn 16 and was diagnosed eventually when she was 6 after suffering since the day she was born. Luckily for her, puberty seems to have cleared her for now but we have been told chances of it recurring in meopause or before are more than high as obviously as you know it's incurable.

My 3 yr old dd has just been diagnosed too as i spotted the symptoms straight away this time. Thankfully my 5 yr dd has missed out.

I'm sorry I don't have any adult advice for you as we haven't got that far yet.

Why are you having the biopsy in May? That was the first thing they did to my girls for a 100% diagnosis.

Do you mind me asking how old you are?

Apologies for the TMI nature of this post...

Yes. I had it from puberty to the menopause.

Steroid ointments were a lot less effective in those days, and I frequently couldn't sit still for the itching, and scratched myself to shreds. It ruined my confidence sexually, as you can imagine.

In the end at the age of about 43 I went to my lovely GP who said I didn't have to live like this, and referred me to dermatologist for biopsy and treatment. I was put on Dermovate twice a day for about three weeks (I think), and then told to use something weaker (Eumovate?) as required after that. Didn't work, and I used more Dermovate.

Once the symptoms were under control, I noticed that there was a strong link to my menstrual cycle, and it flared up at ovulation, and during my period - especially if I didn't use tampons, ie whenever there was more discharge.

The good news for me is that relief has come with the cessation of mentruation. Oh and despite all the advice about not using steroids on the genitals, I did so on and off for forty years, and have had no adverse effects.

My DD has this and despite going to several specialists, I'm too scared to use the steriods on her.

Please tell me what you mean by "clear up"? Does it go away or is the skin ruined never to recover? Doctors say "maybe" and "don't know".

My skin cleared up completely. The white patches and thickening disappeared, and there is no visible scarring. It's an area that heals really well.

I would say use the steroids, Chaos. If she itches like I used to, it is a torment.

I have lichen simplex, the less severe form, but the itching can still drive me mad. I use trimovate at the moment but it only works for a short time. Years ago, a doctor gave me a cream that cleared it up for years, but I can't remember what it was! I wonder if it was Dermovate?

I had it as a child but it cleared up at puberty. I used a variety of steroid creams for a very long time (age 5 until 14+) and also had some homeopathic remedies for it (although they coincided with puberty so make up your own mind which cleared it up). By cleared up, a very good dermatologist could still probably see some white patches on me but it doesn't trouble me in the same way. I do get a lot of itching when I wear any type of sanitary pads but it clears up quickly and isn't something I worry about.

I haven't had any adverse effect from using the steroids but I have had a lot of mental health issues relating to it. I had to have quite a bit of psychosexual counselling (NHS and relate) to get over it.

I think in my situation, a lot of my issues were from how it was handled by the doctors and my mother. My tips would be

1. Use the steroids because they will clear it up and make your child feel more normal.
2. One thing that really helped me was warm, salty baths. They hurt like hell when you get in, but do relieve symptoms.
3. Don't get cross with your child for scratching, fidgeting or not drinking enough. The not drinking enough is absolutely on purpose. It hurts to pee, even with very dilute pee. All of those things are to relieve symptoms rather than being dirty, trying to annoy, or just being naughty. Try to understand rather than getting cross.
4. NEVER ALLOW STUDENTS IN THE CONSULTING ROOM. The dermatologist I went to was a leading person in the field, which was fabulous, but dreadful because we always had students having a look. My Mum was always asked if I minded but she answered that I didn't mind. She pursuaded me that doctors need to learn so it wasn't a problem. Yes, they need to learn but I don't feel children can give informed consent to something like that.
5. Try to avoid making a big deal about it. Just stick the cream on, or if you child is old enough, let them put their own cream on. No comments about what you see.

Sorry, as you can tell from my post, things happened to me as a result of this that have had lasting effects and they weren't the medications. I understand that the creams are very strong and scary but the psychological scars can be even worse.

I just logged back on - wow - so many posts, thankyou.
I am 38 (to the person who asked) and I remember itching myself until I bled when I was in the pubertal stages. It all makes sense now. It flares up at different times of the month but I don't think it is the worst case, as I have looked on the internet and seen some horrifying pictures. I will use the steroids without fear...
Sadly, my 9 year old daughter is describing exactly these symptoms and also the pain on peeing which one of you describe, so I am going to get her seen as well, but this would be devastating for me if she also has it.
I have continued to have a healthy sexual life with my husband of 15 years, but in recent years sex was painful often and this was why I aggressively pursued a diagnosis beyond thrush.
I have to go bath the children now but I will return later.

Thank you everyone who has replied to my concerns on this thread, and thank you babar for starting it.

I shall be brave and start with the creams straightaway as I am heartened that there could possibly be skin tone improvement.

She's now 11 and is starting to get very concious regarding it, whereas before she was pretty pragmatic about it.

She's also been diagnosed with vitiligo on her face, which is also auto-immune, which has increased my anxiety regarding her contracting diabetes or lupus. Does anyone have experience of that?

Thanks.

I realised last night that my post was very, very negative. One thing that my Mum did that was fabulous was to get a good relationship going with my dermatologist's receptionist. You know how it is, you make the appointment when things are going badly but by the time the appointment actually comes up, things are much better. Well, my Mum arranged it so she could call up when it was bad and I'd be seen that day, or that week. That way the dermatologist saw it when it was bad and knew the full extent of it.

Chaos, I haven't had any of the auto-immune things that your daughter has had or you are worried about, but I have hypothyroidism and also had mild alopecia in the past. Sorry to add more to your list. Sadly if you do have one auto-immune thing, it does make you more likely to get others but you never know which. For me, if I'm ill I think about it but not until then. No sense in worring before things actually happen. (Easier said than done and my DH wouldn't really agree that I don't borrow worries anymore!)

Also Chaos, at 11 your daughter might only have a little while more of this. Mine cleared up during puberty. I guess with me, the flare ups just became less frequent and one day I looked back and realised it hadn't happened for a year or so. It was very gradual.

I just wanted to add to this thread - I have lichen sclerosus and apparently the tearing and very poor healing after childbirth was associated with it (search my name if you want all the gory details). Had I known that it was a risk I certainly wouldn't have been induced and would have asked for a CS as an alternative. Also as it is autoimmune my dermatologist has had me tested for thyroid function as hypothyroidism is associated.

I have Lichen Sclerosis and taking the following steps keep me comfortable. Use Dermo Shower to wash, completely soap free. I use my dermovate twice a day, as well as use dermo lubrication now and again throughout to keep my labia moisturised. I apply Replens three times a week via an applicator and use 'Yes' lubrication if I have intercourse. This holiday I've bought shorts half a size looser for comfort and freedom and the thongs weng into the bin months ago. Big Pants! Don't dispair and make little changes. I've moved from being devastated to accepting that as awful and life changing Lichen Sclerosis is, it doesn't define me.

Hello,
Not sure whether this thread is really dead.
I have been diagnosed with Lichen Sclerosus last Friday.
Went to see doc for a haemorrhoid and ended up being told that I had LS! Mine is the non itch one. I am post menopausal.
Was prescribed the Dermovate ointment but I struggle to find out about the quantity to apply and best time in the day to apply.?Doc gave me the NHS info and asked Nd to come back in 4 weeks. What are your experiences?

I have lichen sclerosis and at the moment I am having a nightmare as time of the month and sanitary pads must of triggered it of again I am constantly irritable underneath and also have thyroid problem and diabetes both auto immune conditions and also i don't know if anyone else gets this but I can feel it tingling and twitching driving me insane

After years of problems due to Lichen Sclerosus, i.e. itching, splitting skin, adhesions and fusing, I had had enough. So, just over a year ago after doing some research on the internet, I found an article on www.lichensclerosus.net I went to my GP with the article and asked her to be prescribe Estradiol cream, I got Estriol cream which isn't as effecive but after only a couple of applications I could feel the difference. I don't have to use lidocaine during sexual intercourse now either.

I am also on the time of the month and have lichen sclerosis I am also on thyroid medication diabetic and on anxiety and depression tablets and high blood pressure and since time of the month the itching is terrible luckily I finish time of the month Saturday but it's horrendous I can't stop itching just hope my 6 year old daughter doesn't get it xx

Me.

Lichen schlerosis was considered a possibility when I had similar problems. It turned out I had dermatitis and vulvadynia in the end. I used the steroids given at the time and this hasn't had any long term side effects. Don't be afraid to use steroid creams for LS either. Although my condition was not the same, I really do sympathise as I suffered for 9 years undiagnosed and spent a further 12-18 months being passed around a bemused GUM clinic before the hospital photographer (yes really!) sent photos of my shredded undercarriage to an amazing dermatologist in London who finally got me on the road to recovery (which took time physically and mentally but at least someone knew what to do). Best wishes to all x

I know this is an old thread is there anyone out there with lichen sclerosus?

One of my dds does. Pretty sure I had it until puberty but was never diagnosed so suppose it’ll never be confirmed. Dd’s has improved significantly with the use of steroid creams.

Im having terrible flair up at the moment. Been using the steroid cream but doesnt seem to be improving it. Any advice?

Which steroid cream? Is it Dermovate (the strongest)? Assume you know not to use any normal soaps etc on the area, no synthetic underwear etc?

Thanks blinkingblimeyYes dermovate and been doing all other stuff. How long does a flair up usuall last?

Afraid I can’t really answer that as all individuals will have their own ‘pattern’. If you’re on the edge contact your consultant and explain you need an immediate app...or, if you were gp diagnosed, ask for a referral to a specialist ASAP. Any chance your job gives you private medical...there are a few really good LS specialists around if you’re happy to travel to get to them.

Thank you. I phoned and got an appt on tues. They are now saying they dont think its LS. Although they have been telling me that for last 17years! Im so stressed out my anxiety thru the roof. They are saying itd vulvodynia whic really is nerve pain in your bits feels like burning all the time hurts to sit down.

I was diagnosed a year ago in 2018. Extreme itching & painful intercourse. I am post menopausal. It was confirmed as being LS with a biopsy. I found this product while waiting for confirmation (and for my Dr. to get back from vacation so she could prescribe me something) as I couldn't wait. It's called "aidance terrasil 3x anti bacterial skin repair ointment." Here's the link: www.aidanceproducts.com/terrasil-skin-repair-ointment
It saved my life. Stopped the itching and repaired the skin. The doctor prescribed a steroid cream. I did use it for a couple months but honestly, the aidance is what continues to help the best and now I don't hardly ever need it. I switched to "O Naturals Moisturizing Organic Coconut Oil, Shea Butter Bar Soaps," and occasional use emu oil. I also spray off with water after the bathroom to keep any urine off the area. I hope this helps someone. I am not affiliated with Aidance in anyway or any of the products l listed.