Lichen sclerosis

[Larks0ng]

Does anyone have experience or knowledge of this condition, and could it be linked to Lupus as it is an autoimmune condition? Would be very grateful for any information.

[Tiggywoos]

Sorry no but I’m sure I remember a post about this ? I’m sure someone will offer some words of wisdom Take care xx

[Tiggywoos]

Is this the same ? I have Lp in my mouth , vulva , vagina , ears and throat ...infact they call

It LP of the mucosal membranes .. it does flare ... I have had it for nearly three years ..

I belong to a group on face book ... Lichen Planus support ....

There are lots of people who suffer from all forms of LP.... All helpful and with empathy .... Check the site out xx

[Larks0ng in reply to Tiggywoos]

Thanks Tiggywoos. I saw that post about Lichen Planus but I think it's a slightly different thing. I will google to see if there is a support group for Lichen Sclerosis. I'm not on Facebook. Thanks for getting back to me. Appreciate it.

[Tiggywoos in reply to Larks0ng]

Glad jmiller has helped 😊❤️X

[Tiggywoos in reply to Larks0ng]

I’m not on Facebook either that’s why this forum is so brilliant 🤩 x

[A-r-c-h-I-e in reply to Larks0ng]

Possibly sjogrens

[Jmiller623]

Hi Larks. LS is typically found in females and usually vulvar. 20% of sufferers have extragenital manifestations. There isn’t much you can do for LS. Vulvar LS can be managed with topical or intralesional therapies.

With that being said, LS cause is multifactorial. Low estrogen, immune system dysfunction (LS is highly associated with other autoimmune do like alopecia, vitiligo, thyroid, diabetes), genetics, prior trauma or surgery and infections are linked as possible causes of LS.

A good derm and OB/Gyn (if vulvar) would be able to help. I know some women swore by coconut oil for it but I’d never advise that without speaking to your doctor.

Hope this provides some needed info. Sending hugs. ❤️xx

[Larks0ng in reply to Jmiller623]

Hi Jmiller, Thank you, that's really helpful. My GP has prescribed a steroid cream/ointment which I should get tomorrow to be used for 4 weeks then go back to see her. She was quite frank with me and did say worst case could lead to vulvar cancer. I don't really have the itching that I read about. Just thought it was an ageing thing as I am now 72. Not something I want to discuss with anyone outside of this forum so I'm really grateful for the information. (Have had Lupus for over 35 years). And thank you for the hugs!

[Jmiller623 in reply to Larks0ng]

Yes. Very common in post menopausal population. Saw a lot of it during OB/Gyn rotations. More prevalent than you think. Many complain of itching, painful sex and burning with urination. It does put you at risk of vulvar cancer but it does not increase the risk hugely. Being over 70 is the biggest risk factor for developing complications. Ob/Gyn will prescribe vaginal estrogen sometimes and some women find some relief from this as well. It’s definitely manageable but very uncomfortable. Sorry you have this on top of everything else we deal with.

[Larks0ng in reply to Jmiller623]

Thanks again Jm. You have given me some comfort! I will see how it goes with the steroid ointment over the next few weeks and will try to not imagine the worst in the meantime! Really kind of you.🙏

[Melba1]

Hello, I’ve had this since I was a young child. Once they biopsied (15 years later) and got the right treatment, it made a massive difference. It’s much more common as ladies get older and the risk of cancer is much lower if you get it when you’re older and it’s treated quickly. If yours hasn’t itched much that’s also really positive as some of the damage and danger is because untreated the itching can be so bad that you just can’t help yourself from scratching until it bleeds and scars.

Have you got dermovate? That was a magic treatment for me.

And yes anything autoimmune (which lichen sclerosis is) often accompanies other autoimmune conditions as some of us just more genetically prone to them. I remember my gynaecologist telling me (as a teenager) to have my children as soon as possible because that area would get too damaged from the LS for sex and childbirth and that I should expect another autoimmune disease to develop in my 30s so to live life to the full first. I didn’t take much notice but she was right and I got lupus in my 30s.

If you use the steroid cream that should really help. You should see a dermatologist too for annual checks but it’s mostly very livable with once under control. I have some scarring and the area rips and bleeds easily (I have bladder problems from the lupus and inserting a catheter is very unpleasant because of the LS damage around there, but that’s 40+ years worth of damage and I mostly don’t really notice it day to day.

Are you on treatment for your lupus? My lichen sclerosis has been much better on oral steroids for the lupus and also immunosuppression.

Like with anything there’s different severities so hopefully yours is a mild one and won’t cause you too much trouble, especially now treated xx

[Larks0ng in reply to Melba1]

My goodness, thank you so much, Melba, for sharing your experience. You seem to cope with it admirably. That has given me a lot of optimism for the way ahead.

I will get myself some dermovate - thanks for the tip. I have seen that mentioned in some of the info I have been reading online. Have also read about Emulsiderm - an antimicrobial cutaneous water additive. The steroid cream I am expecting to get today is clobetasol, I think.

I am fortunate in that my lupus is now largely under control only taking hydroxychloroquine, and prednisolone when I have a flare which is increasingly rare nowadays, thankfully.

Thank you again for your kind words and very helpful advice. 🙏

[MEGS53 in reply to Larks0ng]

Hi. I had this after a particularly nasty infection and lots of abx. It is indeed very painful!

OTC Sudocreme was soothing while I waited for steroid cream.

Hope it improves soon, xxx

[Hidden in reply to Larks0ng]

That’s the stuff I have prescribed and it works for me. Sorry if my replies are erratic, I just can’t seem to get to grips with the sequence of this set up and often don’t find replies until ages after they appeared! 😩👵🏻

[Hidden]

Yes I have LS which started with the menopause. I have a steroid cream that I apply twice weekly as a holding dose as prescribed and more when it flares. I also have Interstitial Cystitis that started at the same time. I am on HRT combined patch treatment which has helped. Note I have Stills disease not Lupus which is an AI form of RA. I’ve had it over 40 years but these issues did not start until my early 50’s. I have some scar tissue from LS and if I have an RA flare the LS and IC go berserk. I stay in bed on those days and try and sleep it all away. The steroid cream works well for me but I am very sensitive ‘down there’ and don’t wear trousers any more or ride a bike as it hurts. I also use a daily vaginal lubricant which helps. I know how it feels and understand.

[Larks0ng in reply to Hidden]

Thank you Stills. Very useful information and I am so sorry you have such a bad time with it. I have suspected for some time now that I may also have Interstitial Cystitis as I have had what appear to be intermittent UTIs which are never really diagnosed as such but the GPs prescribe antibiotics anyway. I have been using Vagisan on and off (which my GP agreed was useful) and will continue to do so. I have read that many ladies give up on using steroid creams/ointments and I wondered why? Maybe it is too messy? I haven't received mine yet from the pharmacy so don't know what it's like. Like you, I tend to wear skirts indoors (with no pants underneath!). I am not venturing out much at the moment whilst the Covid cases are still high. I'm so grateful to hear from people such as yourself and Melba as it's not a subject I want to discuss with even close friends. So thank you for responding.

[Hidden]

I sympathise. I don’t even like to talk to my hubby about it. My pharmacist randomly fulls my scripts with ointment or cream but I find the ointment better for the vulva. Used in small quantities it’s not too messy but worth it for relief. I keep old knickers just for days when using the ointment. I’ve read that many discontinue due to worries about steroids in the ointment but also that the benefits outweigh any risk. Your GP will advise and it will be your choice. I found once it was under control twice weekly was enough to keep it that way mainly. I’ve yet to find anything to help with IC and reject antibiotics unless infection proved as I they often give me thrush. If I’m reincarnated I’m coming back as a man with a w***y instead 😉

[Larks0ng in reply to Hidden]

Oh good luck in your reincarnation! I'm not too worried about the steroid aspect as I've read that LS can cause 'thickening' of the skin and therefore the steroid should counteract that with the 'thinning' effect. I'm eager to try it out anyway. I'm greatly encouraged by what you're telling me. I'm not a fan of antibiotics either and am surprised they keep prescribing. Easy answer I guess. The female anatomy hasn't been designed very well........🙄

[Hidden in reply to Larks0ng]

Think we were designed by Westminster council who built that daft hill at Marble Arch 😂😂

[Krazykat26 in reply to Hidden]

I'd love to have a willy for a day or two!! I'd probably keep playing with it though!! 😉Would be lovely to pee standing up!! 🌈😽😽Xx

[Hidden in reply to Krazykat26]

🤣😂🤣

[Krazykat26]

Hi LarksOng 🤗I'd like to take the opportunity to thank you for this post..I admire your courage n I am finding it very informative!!

I'm post menopausal and now I know what lichen sclerosis is I'll definitely keep an eye on my lady garden!!

You've had some good replies too..I hope that the steroid cream works for u. 🌈😽😽Xx

[Larks0ng in reply to Krazykat26]

Hi Krazykat, Thanks for your encouraging words! Forewarned is forearmed as they say. I hadn't heard of this before I started googling. Yes, the replies have been amazing and I'm so grateful to all of you who have replied. Thanks also to Megs for her comments.

I don't know what I would have done without this forum as I couldn't even bring myself to talk about it to my oldest friend (since we were 12 - so 60 years ago!)

Thank you all.

😍

[LalSD]

Early onset of Lupus, I had Lichen Planus overlapping Lupus. I do not know the one you mentioned. Wish you quick recovery. L

[Larks0ng in reply to LalSD]

Hi LalSD, Thanks for your post. I am 4 weeks into my GP's suggestion of treatment with steroid ointment and it is helping. Seeing her for follow up in 3 days. I think I'm in for the long haul though! But it's manageable. Take care.

[Sher78]

I have LS. While I don't believe there is a DIRECT link between LS & lupus, I do believe that LS is an autoimmune issue (rheumy agrees with this) & we all know what they say with autoimmune issues...they tend to travel in packs. My current regime for LS is to use Dermovate OINTMENT twice a week, wash the area twice daily with Sanex Zero and moisturise with Epiderm Ointment every other day. I use non bio washing liquid and no softner for all laundry (this includes towels, bedding etc). If I start to have trouble, I use the Dermovate twice a day, an antihistamine at night (to help with the itching) and wash myself with Epiderm or Doublebase only. I also have Sjogren's (as well as Lupus) so I am generally dry down there anyway. I also always use lubrication. My architecture has changed down there now (as can happen with LS), my outer labia has disappeared completely. The itching (which not everybody gets) is the thing that used to cause me loads of trouble as I would scratch myself until I was bleeding and red raw and it got to the point that I couldn't leave the house as I couldn't wear underwear as I was so sore. Thankfully, I have learned how to control it now.

[Larks0ng]

Hi Sher, thanks for your comments. After my GP diagnosed LS last August, I arranged a private consultation with a Gynaecologist in September, who disagreed with this, told me to discontinue Dermovate, and prescribed Vagifem (vaginal pessaries) to be used 3 times a week. She also referred me back to the NHS Vulval Clinic for a consultation with a Gynaecologist/Dermatologist (which took 6 months to materialise). This Gynae disagreed again and said there was some LS, so asked me to reinstate the Dermovate, use Hydromol for washing and moisturising, and instead of the Vagifem pessaries, she recommended something called an Estring which is a hormonal vaginal pessary shaped like a small donut, which once inserted, stays at the top of the vagina for 3 months. I googled this and was put off straight away - too many things to list here! - I discussed this with my GP and we agreed that instead, I would continue with the Vagifem pessaries, increasing to 5 times a week instead of 3. All of this works for me, and I will be seen again by the NHS Gynae. in 3 months. Like you, my architecture has changed and my outer labia have also disappeared. If I'm at home I just wear skirts with no underwear. I am coming to terms with it now after my initial panic! There are much worse things going on in the world! Thank you again for sharing your regime.