Lichen sclerosis

Sorry condition not condo

So far everyone has been female, however I'm a male and had the condo for about 15years. In males it can cause the foreskin to thicken and in the extreme can crush the end of penis the only treatment to deal with that is a circumcision. Unfortunately in my case the surgeon mucked up and managed to attach the scrotum to the underside of the head of the penis, making erections very painful and causing the penis to become buried in the surrounding area.

The rest of the treatment is the same as as already spoken about, dermovate and itching, tingling and bleeding are also symptoms. I suppose that there is not that big a difference between the two genders

Thank you very much itsonlyme Wed 07-Aug-19 14:05:21 for your post. I've just listened to the lecture and found it to be very interesting and informative. It lasts about an 1 hour and 15 minutes. I think I have more knowledge now than my doctor. It's a shame there's no funding for LS. Rather down heartening to think this is for the rest of our lives.
All the best and thanks again.

Tea3: many thanks for your advice.

Bblynne I swim regularly and I've not been aware of the chlorine causing extra irritation, even back in the horrendous early days before diagnosis. The soreness used to stop me doing too much, but that was the same on walks. I've used castor oil on its own to help with chafing. It's quite thick so it may be of use as a barrier. Don't be tempted to try anything with zinc in it. A nurse told me that zinc dries the skin which isn't a good idea.

I also suffer with LS and wondered if any of you could recommend a tried & trusted barrier cream I could use so that I could take my GC swimming without the chlorine affecting the condition. TIA

I've been looking on the net too.
There's a doctor called Goldstein in America who is considered to be one of the best gynaecologists in the Doctor's Who's Who. He has done a lecture called Lichen Sclerosus: The Unspoken Pain.
To find it type lichen sclerosis lecture dr goldstein into your search engine. Hopefully, the first item you see will be a site called theitchybits.wordpress.com. The blog (by a sufferer) is quite long but halfway down there should be a recording of the lecture by Dr. Golstein. It lasts about an hour, but I found it very helpful and reassuring.
Let me know what you think.

Sharon103 - I had eight blissful months of relief using emu oil (Amazon my source). It then stopped working but because it is said to be closest to the skin's natural oils, I still use it twice a day to moisturise. I was told by a nurse that I had a dry skin condition (still undiagnosed at that point) and it certainly all looks a lot better for a regular application of emu oil. I would be very interested to hear if Gladskin Eczema Gel works for you. I've been using it everyday for more than two years and it is still working now. After the emu oil experience I'm very wary of being too enthusiastic. It's not cheap but the Gladskin people are very helpful and have offers from time to time. They won a European Award for innovation just recently. Well deserved!

I posted at the beginning of the thread and keep checking for more replies.
My sympathies to you all. I guess you have read my post at the beginning.I dread to think we have this condition for the rest of our lives. 3 years has been bad enough.
Thank you ladies for adding to the post. I wish there had been more replies, but as we said no one seems to talk about it do they.
Please add if you discover any positives or tips for us sufferers. I might give the emu oil a try although things I've tried have only made the itching worse. I've made a note of Gladskin eczema gel too.

itsonlyme - I agree with you re the silence surrounding this devastating skin problem. In the early days of suffering I would have welcomed a biopsy as at least thirteen medics during the course of a year said that it looked nasty but they didn't know what it was. Just one consultant mentioned he didn't think it was ls and this was the first time I had heard the words. I looked it up and later when a dermatologist said it was ls, I was horrified. Still no offer of a biopsy. Just the prescription steroid ointment and told to check for any odd changes and they would see me annually (more like biannually after I've chased them up? From roving around the internet looking for help I realised this attitude of 'we can't cure it so tough' was the experience of other sufferers. I decided no point pressing for a biopsy because it can't be cured and I would have the added soreness of the biopsy sites. But keep an eye on it it'sonlyme, even if not troubling you, it can cause devastating damage if not held in check. I'm reading 'The Remarkable Life of the Skin', I've not yet seen reference to ls (just eczema and psoriasis)but there is all sorts of skin research going on which is really cheering.

Thanks for your replies.
This condition seems to be unmentioned, until we actually suffer from it. Years ago I used to endure the annoying cycle of cystitis/antibiotics/ thrush/ cystitis ...........again and again.
I took advice from many self help groups and clinics, but never once in 30 years did anyone mention Lichen Sclerosus and what it could do.
I have two daughters and when the time is right I'll bring the subject up and make sure they know as much as possible about it. At least then they won't be in the dark with regard to something which seems to be quite prevalent but is hardly spoken of, but which can, by the time it's diagnosed, have had devastating effects on life and relationships.

I was advised to use dermovate twice a day for a week, then stop. It can cause the skin to get very thin which you don’t want. It’s powerful stuff so don’t overdo it, just spread it very thinly. It’s a fine balance!

I may or may not have LS - no itch or white patches, but very sore and painful, and varying opinions from different health professionals when I was diagnosed (eventually) 7 years ago. Finally I was sent away with a prescription for Dermovate and told to keep an eye out for cancerous changes. I seemed to need this steroid ointment all the time so I experimented with other stuff...rubbing in emu oil two or three times a day helped for 8 months and then stopped working, ditto pomegranate oil and tamanu oil. For the last two years I've used Gladskin's eczema gel twice a day - it does it for me but I will emphasise that I'm not entirely sure that I have LS.

Hello everyone,
I was diagnosed with Lichen Sclerosus at the beginning of the year. My GP gave me Vagifem and Dermovate. The condition appeared near my urethra so wasn't noticeable to me, and she described a white area of tissue about the size of a hazelnut. I only had an intense itch and dryness and the treatment worked really well.
I'm VERY aware that a great many people have far more pain and distress with this condition, and realise that it could be much worse.
Although I had followed her instructions, the white area was still visible at my next visit, and this time she mentioned a biopsy if it was still there in 3 weeks.
It IS still there, but I have no symptoms at all now, and I'm concerned that a biopsy might actually trigger a reaction and set off far worse symptoms.
Any advice would be welcome. Thank you.

Hi everyone, I too suffer from itching and burning LS and it really is no fun. I manage it reasonably well with Dermovate but am very poor at remembering the twice a day regime when it gets bad. It also makes sex painful if not impossible which takes away any spontaneity! I also have light bleeding now and then which my GP reckons is from a mesh prolapse repair I had done a few years ago, but I’m not convinced it’s not a symptom of the LS instead. Do any of the rest of you bleed?

Hi Worried, yes I suffer from this & it’s very distressing. As others have said the itching is unbearable especially at night. I was prescribed a very strong steroid which controls the condition but I am now suffering sides effects, ie, moonface, my daughter was really worried having not seen me for 6 weeks. My face had become bloated & I feel very self conscious. I’m now using the steroid in very small amounts to keep it lichen sclerosis at bay & avoid side effects.
Sorry for everyone suffering from this condition , it’s not pleasant & also very personal, thanks for posting OP

I had the white patches, even though it was an allergy.

Good grief grizzly bear. Well I'm pleased that it's an allergy for you and not the other.
Did you have the white patch if skin though?
I've only had a doctor diagnosis and no tissue sample done.
I have various allergies and this is making me wonder although saying that, from reading up on the subject I think mine is Lichen Sclerosus.

The doctor told me, that they thought I had it. They sent off tissue samples to the lab. It turns out to be an allergy to Orange Juice!!! If I don't drink any, it goes away. Had it for 6 years, before final diagnosis.

Thank you for your pm. Much appreciated.

Yes, I've had a Vulvectomy, removal of bilateral lymph nodes and finally a course of radiotherapy and chemotherapy.
Hopefully now they have zapped it.
It's not much fun

mrsmopp, I'm sorry yours turned cancerous. As it seems as though a few of us have this skin condition can you advise us please? You say to keep an eye on it - but how? I can't see it so am not sure what to do. I really don't want to go back to the GP as it is much better than it was. I think mine may have been caused by taking three different antibiotics every day for 18 months. The side effects involved my mucus membranes, including my mouth.

Pagets Extra Mammary Disease of the vulva. He also discovered Pagets bone disease. When I volunteered at our local hospital A young doctor argued with me that I must have a bone disease! He only shut up when I told him I would ask the gynae why he removed half of my vulva!

What is PEMD please Sussexborn ?

Thank you all for being so candid it is a horrible condition and not one that's easy to talk about