Finally an accurate diagnosis.

[sobs1962]

After 3 1/2 years of suffering, been to see specialist vulva dermatologist and he has diagnosed me with lichen sclerosus, lichen simplex and vulvodynia. Has given me Cetraben to be used as needed, Trimovate for anal region and Dermovate for vulvar region especially near vaginal entrance. I have believed it was either Lichen Planus or Lichen Sclerosus for at least 2 years, but clearly most doctors don't really have a clue and finally, a specialist who sees vulvas all day every day has finally proved me to be right. Wish it wasn't that as,it's not curable , only manageable, but comes with a higher risk of vulval or skin cancer. Any tips on how to manage this would be greatly appreciated. Currently pour water over myself after using loo, wear 100% cotton underwear which I wash by hand, but any other tips most welcome.

[Ratton726]

I have had Lichen Sclerosus for quite a few years-gets itchy/sore every day -I use Dermovate at night and Cetraben most days- I think the trick is to keep that area moistened with plenty of Cetraben. I do see a Gynae person whom I don't think knows that much about the condition-but I don't have a choice of whom to see - and don't fancy going to London (I am 76 and don't drive) live by the sea, have other health issues -(E>T -blood cancer and arthritis),You sound like you are doing all the right things.

I was using Amitryptiline at night (it was for sciatica pain)think it helped a bit with LS-but side effects were nausea and couldn't eat properly for months! Felt nauseous all the time and very tired! It was the lowest dose 10mg.( for nerve pain).

[sobs1962 in reply to Ratton726]

It truly isn't fair what us poor women have to go through especially after menopause it definitely proves that God is a man, as women appear to be useless after we can no longer have children and my husband and I used to have a very good sex life, but now it's gone down the drain due to what LS does to the clitoris so all kinds of sex are out of the question either that or it's completely one-sided. My husband doesn't appear to be bothered, but he's a man, so of course he is. I'm 59 by the way and my doctor has suggested HRT, but unsure about it.

[Itzallgood1]

I'm a male with similar situation but in male way.. My dermatologist recommended using other CeraVe. She wants me to use while in shower. Going to try it tonite and see how it goes.

[sobs1962 in reply to Itzallgood1]

I hope you get relief from the itching and pain, it's just so horrible.

[Itzallgood1 in reply to sobs1962]

I do for awhile then it comes back. So relief for a week then comes back.

[sobs1962 in reply to Itzallgood1]

It's such a horrible place to have irritation and pain and unless you've suffered, no-one understands, thank heaven for this forum, where people genuinely understand.

[Itzallgood1 in reply to sobs1962]

Very true

[Itzallgood1]

In talking to my dermotologist she recommends stockings with garter belt or thigh high or knee high stocking. Cotton underwear or no underwear.

Loose pants, skirts or dresses.

Loose fitting cotton.garments.

Fragrance free pH neutral soap.

Tub baths in.the morning and at night without additives and at comfortable temperature.

Unscented detergent.

Rinse with water using sports bottle or perineal irrigation bottle.

Feminine sprays, douches, powders are not necessary products and can be omitted from personal practice.

Use fingertips for washing; pat dry, do rub dry. dry.

Use tampons or cot/n.pafs.

Toilet articles with out dyes.

Dry vulvaby gentle patting.

This is from from my female dermatologist.

Of course some of these can be pertain to men also.

[sobs1962 in reply to Itzallgood1]

It's an embarrassing and for me quite shameful problem because as a person with severe mental health problems it makes me feel like I haven't been thorough enough with personal hygiene, however apparently it's the opposite and I've been over zealous with cleaning that area of my body and with all the wrong stuff ie baby wipes, soap etc. Have Hashimotos thyroiditis, which is an autoimmune disease as is LS and once you have one autoimmune disease, it's highly likely you'll get others. I also believe rightly or wrongly that you get what you deserve in life and all the suffering I've had over the last 20 years is pretty much my own fault. I am a very negative person and I do wonder if negative people attract more negativity into their lives. Since my daughter died in 2007, I'm not the same person anymore. Hope you can see the positives in life, as I think I will always think and feel this way, despite having twice weekly therapy. My general view of people in the US is that they're more positive than us brits. Hoping you get all the help you need, even without health insurance and you start to feel better soon.

[Itzallgood1 in reply to sobs1962]

I don't believe you get what you deserve. Why would you think you deserve this problem? Think of people who have had cancer and didn't smoke or drink. They didn't deserve cancer. Bodies are not perfect and I should know. I do not blame myself for any of this just as you shouldn't blame yourself for yours. If you have been diligently cleaning or caring for your body you have done your best. At least you have tried. I've seen people who don't take care of themselves and they really need to. Don't be hard on yourself like that. It's NOT your fault.🌻

[sobs1962 in reply to Itzallgood1]

This is what I get told all the time, however, I have Borderline personality disorder which makes people absolutely despise themselves and blame themselves for everything and anything and my twice weekly therapy is supposed to be helping but I do wonder if at 59, I'm just too broken to be fixed, after all I've felt this way about myself for over 50 years. My life or should I say my "attitude " to life stinks, but I honestly don't know if I can change at this late stage in my life or if I want to,as it's easier and safer(in my mind)to stay as I am. I really don't want to stay as miserable as I am now as I don't know how much longer, I have left on earth and feel I should be trying to make the most of each day instead of constantly moaning about how crap my life is, as it could be so much worse.

[Itzallgood1 in reply to sobs1962]

I hear you there. I believe you should try to change. I know I have some really bad days and I can't imagine being like that everyday. I think you can do it. I'm putting my faith in you that you can. I realize I dont know you but I am hoping that you can overcome this. I don't know how much help i can be but hoping that with my support in believing in you will help.

[sobs1962 in reply to Itzallgood1]

Thanks for that, sometimes the best support comes from strangers, as they're not tied to you emotionally and my family are supportive and believe in me to some extent but they get angry and frustrated at my negativity as BPD has the tendency to make sufferers catastrophize their situation. Your support means a lot to me.

[Itzallgood1 in reply to sobs1962]

I'll do my best. Whenever you need to chat go ahead.

[sobs1962 in reply to Itzallgood1]

Thanks, will do.

[Runnerdownunder]

You are not alone! And there is lots of help around. There is a wonderful book you can buy from Amazon called "Help! I have Lichen Sclerosus". It is £2.99 for the Kindle version or £10 for the paperback. It is full of useful tips gathered from lots of people with LS. There is also a Facebook group with over 5K members who would welcome you. It is called Sharing is Caring about Lichen Sclerosus Et Al. I have used many of the suggestions in the book (particularly boron) and have also found great relief from applying an oestrogen cream (Ovestin) at half the recommended dose. I hope you will soon feel much better. ❤️

[sobs1962 in reply to Runnerdownunder]

Thanks for reply, it really helps to get tips from others who suffer from the same condition.