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Lichen sclerosis

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

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

phoenix Tue 23-Jul-19 20:34:38

Yes, and badly! The current steroid cream doesn't seem to do much, and although I use a special wash lotion, showering can be painful.

Now, I say it's Lichen Sclerosis, but it could now be something else, I haven't had a recent check.

The soreness and itching are pretty bad, and at the risk of TMI, I'm pretty sure that the stress incontinence makes the soreness worse blush

Luckygirl Tue 23-Jul-19 20:38:34

My DGD had this at the onset of puberty - I felt so sorry for her. But she was very grown-up about it and would manage the steroid cream and the regime of tailing it off by herself. I am crossing my fingers here, but it does seem to be much better now.

I am sorry you are both suffering.

sharon103 Tue 23-Jul-19 21:11:44

If you mean Lichen sclerosus Worried gran, then yes I've had this for the past 3 years. I thought at first I had thrush and bought Canesten but didn't take the awful itching away, I bought Lanacane and that didn't help and so went to the doctors. She had a look and said Oh I know what that is and prescribed a steroid cream 30g tube of Clobetasol 0.5m to use twice a day continuously for a month. I use it when need be now. She did a print out of the condition for me. It's a white patch of skin from the lower part of the vagina to the anus, Intense itching in what they call a figure of eight in that area. Male and females can get it at any age but in post menopausal women it affects the nether region. I was told and and I've also read up on it on google that there is no cure and a 5% chance that it could turn cancerous. Also the itching is worse at night. If you have the same as me, it is Sclerosus not ending in sis. I sympathise I really do. You just want to scratch so bad at times and to be truthful I have, using some toilet roll. By what I have read, it's not known what causes it although it could be hereditary or menopause. I don't like the thought of having this for the rest of my life but the said steroid cream does help a lot when it flares up. flowers

Worriedgran24 Tue 23-Jul-19 21:28:55

Thank you, it is awful, I had a biopsy and yes you're right sharon03 you have the correct spelling smile

mrsmopp Wed 24-Jul-19 16:18:37

I've had this condition for many years and it's very hard to shift it. It lies dormant sometimes then flares up again. I went to the local hospital walk in clinic, yes, that one, and they biopsies it and gave be dermovate ointment which helps.
Do keep an eye on it and report any changes as mine has turned cancerous but this doesn't happen to everyone. It's not widely known because people don't talk about it.
The itching drives me mad.

Sussexborn Wed 24-Jul-19 16:44:42

Try getting a feme pad - a softened ice pack originally designed to help after childbirth. I have two so one can be freezing when the other one is in use. Or a pack of frozen peas. Cotton knickers if you feel you have to wear something and take care rinsing underwear thoroughly. Try cutting out anything sugary for a few days (this has helped me) or possibly wheat based products. I use lidocaine patches (prescription) on the inner thigh as close to the problem area as possible as it numbs the pain. I have PEMD
which has the same issues though a different disease. Check out Facebook or internet for support groups. Have found out far more from these than from the medical profession. Horrible area to be dealing with but I always tell myself other people cope with a lot worse!

Worriedgran24 Wed 24-Jul-19 20:21:40

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

rubysong Wed 24-Jul-19 23:32:45

What is PEMD please Sussexborn ?

Sussexborn Thu 25-Jul-19 10:48:21

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!

Liz46 Thu 25-Jul-19 12:21:20

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.

mrsmopp Thu 25-Jul-19 23:19:35

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 sad

Liz46 Fri 26-Jul-19 11:04:04

Thank you for your pm. Much appreciated.

grizzlybear27 Sat 27-Jul-19 13:28:11

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.

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.

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

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

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

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?

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.

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.

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!

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.

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.

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 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!