Lichen Sclerosis anyone?

Yes, yes, I have it - so good to hear of other Gransnetters with it - not good that you have it of course! Was diagnosed about 5 or 6 years ago and I too had never heard of it! At first it was thought I had thrush, then vaginal atrophy (whatever that is!) until a specialist dermatologist diagnosed it. Mine is kept under control with steroid creams - a weaker one for weekly use and a stronger one for short term use if it flares up badly. Have to use the emollient shower cream, which I’ve got used to. Fortunately doesn’t affect my life, just have to keep an eye on it and have a yearly check up with my own GP to check it’s all under control. Good luck with managing the symptoms for those newly diagnosed. Good to be able to discuss this with others affected.

I too have had this for about 15years no life style changes, see dr yearly for check and use prescribed cream weekly or more frequent with flare ups.

I have had this about 8 years now and was literally just given the steroid cream, no other advice. I saw a gynae yearly until Covid then in 2022 was 'signed off' as there were no white patches and it seemed to have cleared up. It was never what I would call painful and rarely itched, just the white patches. Nothing since then.

I have had LS for a number of years. Join the Facebook LS group - lots of information, and it's good to be talk to others with the condition. Good luck!

Yes I have it, control it with clob steroid cream had mine for a few years now

I was diagnosed with this a decade ago, after several fruitless attempts to find out what it was. A GP who happened to be expert in dermatology explained it, gave me a leaflet and prescribed strong steroids cream.
It does flare up but infrequently now and the cream sees it off. I don't use any other measures to manage it.

I’ve had LS for 15+ years and apart from being given steroid cream I’ve never been told anything about only using cotton underwear, baths etc. it took me years to be diagnosed with it being intimidated that I was imagining the symptoms. Unfortunately the atrophy means that marital relations are nonexistent despite using vaginal stretchers and 2 Fentons procedures to cut away the atrophied tissue, I wouldn’t wish it in my worst enemy

Oh yes I have this. I’ve had it now for a good 10 years I’m 63. It’s very painful. I did have treatment via pessarries but I did not find anything to help. Just very mild washing products. I actually use emollient ointment on all my skin so that helps. I have terrible trouble getting smear tests done , even with the kindest of nurses who all knew about it. As to hubby stuff!…..Well that takes a little rethinking lol. But don’t give up hope it’s ok when you get used to it.

I was diagnosed with LS about 5 years ago. Thankfully it’s quite mild now due to medication and diet. I do worry about my Granddaughter when she tells her Mum that she is itching down below. My daughter is aware of LS and does keep an eye on her daughter.
It definitely needs to be talked about and not be a taboo subject. x

My MIL had this. She had some minor surgery which was very uncomfortable but she never mentions it now. This was about 5 years ago.

Wow! CoolCoco that's a lot to follow but practically the same list as mine, given by Consultant in Vulva Clinic.

At the moment I'm in remission and have been pondering if I could go back to my one luxury - having a bath using smelly bath creams, until the itch returns. I love a perfumed bath and wondered as the itching has stopped (for a while) if I could indulge?

Anyone here risked it?

I don’t think I’ll be waiting for puberty🙂. The life style advice I was given in the vulva clinic was to hopefully avoid LS progressing to a pre cancerous position and manage it quickly.

My daughter had it around aged 7 or 8 and was prescribed increasingly strong steroid creams. After puberty it eased off, she is now 34 and no longer has any problems. We were told that for some people puberty puts an end to the problem and she is fortunate that this has been her experience.

I wasn’t given any of the advice you were coolcoco Since the cancer op I ve had no flare ups at all so a year now with no Lichen 😂and a cancer free check up just before Christmas

I wear all my same clothes, go pool swimming, use bio washing powder, wear pyjamas my friend was (after my story) also diagnosed with Lichen but also hasn’t heard about any of those precautions you state
My life style hasn’t changed at all, I use and do everything I did before I never knew I had it I thought it was thrush

What I meant by lifestyle changes - I was told by the gynae doctor to avoid wearing tight jeans or Lycra. Wear only loose white knickers - coloured ones apparently the dye can leech onto the skin when you’ve got the ointment on. Go commando round the house and overnight . Avoid swimming in chlorinated pools , and if you do swim don’t sit around in a wet costume but shower immediately. Only use an emollient as soap substitute, soak your nether regions in a warm bath for 20 minutes before applying the steroid cream( this has to be done every day for a month, then every other day for a month, then once a week ). Don’t use bio washing powder for your clothes/ bedding/ towels and put the wash on an extra rinse cycle. Use emollient after every wee at first. Use an oestrogen pessary once a day for a month, then taper. Phew. It’s a lot to take in. I’ve bought a sitz bath, some white short knickers from M and S, a couple of nighties to replace pyjamas, and some baggy yoga pants to wear instead of my many pairs of jeans. I’ve picked up my 4 prescription items. Fingers crossed for an improvement in this grim condition.

I definitely wasn,t told to make any lifestyle changes with this condition. DR said to use prescribed steroid cream every day for "flare ups"and as necessary in between.I,ve had it for about 15years and apart from using the cream and having yearly checks by GP life carries on as normal!

I had a terrible experience with what seems to be a very similar problem - terrible itching and white patches down to my knees - in the 1980's. Had to wear soft cotton men's boxers and lathered myself with creams. However severe thrush was diagnosed by the specialist who advised less bathing and no bath bombs or items of similar ilk and said my condition could also be caused by stress. (I did have a very stressful job). The condition did clear up with some adjustments but occasionally recurred..... However, with the revival of leggings in 2010, which I began to wear them under ankle length dresses and trousers - where I used to wear tights!!... the condition has not recurred.

There are 3 pages on the link that Waterloosunset provided.
I have made comments on the thread as you'll see.
The condition is Lichen Sclerosus (not sis)
There's a lot of info on Google.
No cure I'm afraid but steroid cream is very good.

My mum had it later in life, had regular check ups, had to use steroid ointment at time like 5 out of 7 days then emollient. Used to get inflamed and itchy, so used to scratch a lot in this area. A lot of white areas on skin so the need to be checked out every now & again

I responded to the original thread about this little known nasty condition. I've had it years without knowing what it was and was officially diagnosed last year. I have tubes of steroid ointment and pessaries to counteract the symptoms. I've warned my daughters that if they get an unbearable itch round the vulva, anus area they should go to the doctors to get it checked out.

Thank you- I did put it in the search but no results.

www.gransnet.com/forums/health/1264075-Lichen-sclerosis?

Sorry I meant to say there was a thread on this subject

I think I may have it but not been diagnosed. Wishing you and Bluebelle all the very best.

I had never heard of it except vaguely in threads on here (there have been one or two) until last year when I was diagnosed with cancer caused through it coolcoco
However I haven’t had to make any lifestyle changes so I m not sure what they are