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Does anyone have Lichen Sclerosus?

(13 Posts)
babartheelephant Tue 25-Jan-11 14:26:04

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?

lia66 Tue 25-Jan-11 14:31:51

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?

Butterbur Tue 25-Jan-11 14:36:17

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.

ChaosTrulyReigns Tue 25-Jan-11 14:53:29

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

sad

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".

Butterbur Tue 25-Jan-11 15:01:17

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.

TheVisitor Tue 25-Jan-11 15:04:47

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?

camdancer Tue 25-Jan-11 15:39:52

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.

babartheelephant Tue 25-Jan-11 19:05:48

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.

ChaosTrulyReigns Tue 25-Jan-11 20:16:55

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

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. sad

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.

camdancer Wed 26-Jan-11 13:38:04

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.

breatheslowly Tue 15-Feb-11 21:35:11

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.

Ternet Thu 25-Jun-15 15:04:59

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.

Lico Mon 21-Mar-16 19:33:21

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?

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