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Lichen sclerosis

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

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

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

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

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.

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.

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.

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!

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 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.

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

Sorry condition not condo blush

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

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

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

Tea3: many thanks for your advice.

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 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

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 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.

Tea3 Wed 07-Aug-19 13:50:25

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!

sharon103 Tue 06-Aug-19 19:01:22

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.

Tea3 Tue 06-Aug-19 18:28:31

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.

itsonlyme Tue 06-Aug-19 15:15:14

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.

mrsmopp Tue 06-Aug-19 10:58:24

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!

Tea3 Mon 05-Aug-19 15:07:18

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.

itsonlyme Sat 03-Aug-19 13:10:08

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.

Mamo Fri 02-Aug-19 07:06:35

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?

chickkygran Wed 31-Jul-19 21:37:46

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

grizzlybear27 Mon 29-Jul-19 10:49:12

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

sharon103 Sat 27-Jul-19 19:49:20

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.