Gransnet forums


Lichen sclerosis

(43 Posts)
Worriedgran24 Tue 23-Jul-19 20:27:33

Good evening, does anyone else suffer from this condition and how do you cope?

itsonlyme Wed 07-Aug-19 14:05:21

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 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.

Bblynne Tue 20-Aug-19 14:34:49

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

Tea3 Fri 23-Aug-19 14:01:40

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.

Bblynne Fri 23-Aug-19 20:16:48

Tea3: many thanks for your advice.

sharon103 Sat 24-Aug-19 00:21:19

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. thanks

absthame Tue 27-Aug-19 22:08:22

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 smilesmile

absthame Tue 27-Aug-19 22:10:04

Sorry condition not condo blush

Tea3 Wed 28-Aug-19 21:12:26

That is awful Absthame. The medical profession doesn't seem to have any idea how to deal with this condition.

Skier Thu 29-Aug-19 01:47:47

Hi, just joined. Ive recently been told I have LS with erosive lichen planus. It burns and itches mainly at night. I've used dermovate for almost 3 months now prescribed by gynae consultant which has helped, plus the emollient applied very regularly often after putting it in the fridge! A tip I read somewhere. I'm so relieved and grateful to find this forum. I have been feeling quite alone with this. My GP wasn't very reassuring and made me feel very uncomfortable, although I realise now that she did not know what was wrong so presumed the worst.
Its a horrible condition which seems to be misdiagnosed and misunderstood. It has affected my mental health and things have been very intense over the last months. I'm in my 60s and I like to think I can deal with most things that life throws at me, but this has been a curved ball. I haven't felt comfortable returning to my GP, but will see the specialist soon and hopefully return there for checks if alls well.
I'm gradually learning to self manage whilst learning what's best for me. I wish you all the very best and thank you for sharing your story's, it's inspiring and provides me with a helpful glimmer of light to follow when I'm in a dark place. God bless.

Tea3 Thu 29-Aug-19 13:50:36

Skier I am very familiar with that lonely dark place. I'm also very familiar with negative experiences involving the medical profession. I can't talk about this with anyone I know, it's not quite like having a moan about your tennis elbow or dodgy knee!

Squiffy Thu 29-Aug-19 16:57:35

Olive oil is reputed to be soothing and protective. It helps to prevent the area of skin from drying out and keeps it soft, so less likely to crack and allow infection in.

Skier Thu 29-Aug-19 23:38:40

Hi Tea3, thank you for your reply.
The worst thing about this condition is that it seems to carry a stigma which doesn't encourage disclosure.
Thanks Squiffy for the suggestion about the olive oil. I've heard that emu oil is good too. Just not ready to put anything other that emollient on at present as the product prescribed is so soothing. If suggested products avoids the use of very potent steroid oniment then thats my next route to take. Many thanks both.

Worriedgran24 Thu 05-Sep-19 12:55:06

Thank you for all your candidness as this is not really a subject you can bring up easily! None of my family know I suffer from this horrible thing apart from my OH but he doesnt seem to understand how awful it is and how very uncomfortable it can make you feel.

Tea3 Thu 12-Sep-19 12:37:51

Just saying hello and hoping everyone is having a comfortable day.

denyr1 Tue 14-Apr-20 21:14:28

After six months my doctor googled my symptoms and said she thinks I have Lichen Sclerosis. She told me not to use any creams until my hospital appointment which could be ages away. I have many steroids in the house what have others used and how often? Does this ever go away or die down?

Elrel Tue 14-Apr-20 22:49:52

Some years ago I was alarmed when I realised my labia had shrunk. A mirror showed me a white patch about 3” x 2”. I was scared and paid to see a consultant privately as soon as possible. He was lovely, thorough, and reassuring. I use dermovate twice a week and E45 cream the rest of the time.
I am fortunate not to experience itching now.
I agree with previous posters that this is a little known or discussed condition. Thank you, posters who have said where more information can be found.

denyr1 Wed 15-Apr-20 21:28:58

@Tea3 can you tell me please what emu oil is? My go thinks have LS but not had my hospital appointment yet. Many thanks