Lichen Sclerosis anyone?

I was diagnosed with this after being refused canistan from the pharmacy because of my age.
I went to the doctors as advised and attended an appointment with a gynaecologist. I used the initial treatment then use a steroid cream if needed.
He said it will reoccur so to contact the doctor for repeat prescription as needed. I too had never heard of it.

If you join the FB private group you will see that there are a lot of woman suffering from this and it seems to be very severe in a lot of cases with loss of parts Fusing parts and a lot of pain and suffering in fact incredible suffering and it’s a problem that is rarely talked about, many people didn’t know that had it until it was too late, many ( like me) had never heard of it, even some gynaecologists seemed to have little knowledge Some of the people writing are young woman who can’t have sex for pain, itching, bleeding and completely damaged ‘ lady bits’ most of the stories are horrific yet very little is talked about or even known

I have this. I’m waiting to be formally diagnosed and use Eumovate cream when there are flare ups, meantime. It works well. I have an appointment with the gynae specialists in December. For now, it’s not giving me any trouble, thanks to Eumovate. Sound like an advert, don’t I?

I think I have this. I am waiting for a gynae referral as my GP basically didn't know what it was but gave me Fucidin H steroid cream, which stings like hell. In summary, I thought I had cystitis due to constant stinging. Antibiotics didn't work so I had a look hovered over the coffee table with a torch and a magnifying mirror. I noticed what looks like an ulcer close to my urethra. Having spoken to a friend she gets similar and has been diagnosed with Lichen Sclerosis. Would appreciate advice and guidance on what works for others and how you cope. I can't sit for any length of time as it makes the stinging worse but want to be sure that using this steroid cream -Fucidin H - will help if I keep using it whilst I wait for a gynae referral. Any help gratefully received. Thanks you.

Just a quick update: I rang the consultant’s secretary and explained the situation and that I seemed to have dropped off their radar. She rang me back the following morning with an appt. for 2 weeks time.

I attended the appt. and saw a new (youngish) gynae consultant who was extremely professional and seemed very on the ball.

He examined me and gave me lots of written information to take away and stressed that it’s an auto-immune disease and it would likely flare up when I’m under the weather. He provided a prescription for vagifem and the usual steroid cream and wants to see me every 3 months for a year then telephone appts. alternating with in person appts. unless it flares up or I feel I need to be seen in person rather than a phone appt.

He was very reassuring and I came away feeling that my gynae health was being taken seriously.

Had this for quite a few years undiagnosed as usual till extreme only then biopsied which showed that and Extra mammary Paget’s disease !!!! Now under constant check treatments awful and it’s rare so no NHS pathway only a biopsy confirms diagnosis. Quiescent at moment using regular steroid ointment but no cure 😿

Skullduggery

I’ve been washing my clothes in bio powder and using shower gel (wasn’t advised otherwise), and haven’t really noticed much difference. However, I suspect that food intolerances might play a part when I’ve have a bad experience. I will try and keep a record.
I really appreciate all the helpful advice posted on this thread. 🙏

Yes Skullduggery. I'm glad you mentioned food intolerances. My LS starts itching if I eat certain chocolate and ice cream or too much sweet stuff. It's always been like that. I don't know why but Cadbury's is my biggest offender.
The trouble is I'm a glutton for punishment.

One of my DAC has this. Started aged 3 on their ankle as a small white patch which I thought was a buckle rubbing on a sandal. Several patches on their legs now but nowhere else. Doesn't itch just discolored skin. Saw consultant at hospital who showed his students to see if anyone knew what it was. No treatment given as it was just patches that didn't cause any problems except skin colour change.

I’ve been washing my clothes in bio powder and using shower gel (wasn’t advised otherwise), and haven’t really noticed much difference. However, I suspect that food intolerances might play a part when I’ve have a bad experience. I will try and keep a record.
I really appreciate all the helpful advice posted on this thread. 🙏

Meant to add this to my post yesterday about Lichen - it's Sclerosus here, but Lichen Sclerosis in the US. Don't know why - they just like to be different! A small percentage of cases can become vulval cancer, so a check-up is needed once a year with a specialist dermatologist or gynaecologist.

I have had it for a number of years , did join an online support group but it's not for me , I found 'discussing' the condition and focussing on it made me feel worse! Cool Coco, I swim but have never found the pool water aggravates the condition. What helps me greatly is washing knickers on a full wash ( not quick wash) without washing detergent. I have loads of pairs ! So definitely no washing powder / liquid. In the shower I shower my vagina NO SHOWER GELL!! I use steroid cream when I have a flare up - but since not using soap of any sort I am so much more comfortable! When it does raise its ugly head an anti histamine works wonders!!

LynW

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.

Thinks it’s when the tissue becomes thinner- end up with urine issues, I have auntie & friend who has it 😞auntie says it’s like peeing razor blades. I think now she uses a lubricant that lasts a few days from Boots! I wonder if HRT gel would to the skin any good?

Just to say, I was diagnosed about 15 years ago. Was prescribed the steroid cream and when it cleared up, not to use soap, and NOT to wash my hair in the shower. Know use Dermatol soap substitute and thankfully it's disappeared.

I have it and so does my daughter. My gynaecologist referred me to a dermatologist for a definitive diagnosis about 20 years ago. I use a steroid cream 3 or 4 times a week and a specific daily moisturizer. I still have little flare ups, but nothing too serious. Just to reassure you, LS doesn't mean you'll get cancer, but you should have at least yearly check ups. Good luck.

I get really annoyed when adverts come on TV for creams for a vaginal itch. I spent years thinking that was a problem I should sort. I didn’t visit the dr until a blister caused bleeding. I agree with all the advice the OP was given. I have never given up swimming though. I swim a couple of times a week in a Nuffield Health pool with no problem. LS is an easy problem to deal with if you are retired. The women I feel sorry for are the ones who have to wear trousers and sit all day eg bus drivers. To the original OP, I wish I didn’t have it but most of the time I forget it’s there. Biggest problem is dealing with your s*x life, if you have one.

Yes i have this. I was told to wear cotton knickers and prescribed steroid cream and then emollient cream.. I too thought I had thrush but apparently after a certain age you can't get thrush, at least that is what my doctor told me. I have never been to sent to see a dermatologist about it. I don't have it at the moment but it still flares up now and again.

skullduggery my doctor also wasn’t sure and said she felt she wanted a second opinion but was hopeful it was nothing but thank God she sent me for the biopsy because it wasn’t nothing but only just turning so any longer and it could have been a different story all I m left with is a four monthly check up and have had no symptoms in 12 months 🙏

Looks like I’m in good company. Had LC for 2 years - it comes and goes with treatment of ClobaDerm and cetreban. I’m too old at 75 to have my ‘bits’ looked at but no choice. Hey ho!

i was given a cream to be used for 6 weeks and then a break . To be used when in discomfort. I'm not sure if it is always associated with vaginal atrophy or can be separate but there are various groups on facebook which offer support .

I've had it for a few years and use steroid cream when it flares up and a great soothe balm ,all natural from phoenix and Providence on the Scilly isles.this seems to be giving me bigger gaps between having to use steroid cream.

Thank you @BlueBelle

I’m in Ireland and normally our healthcare system is pretty efficient so I think I’ve managed to drop down a black hole.

I dropped my DH to the GP surgery on Friday (rang just after 9am and appt. for 11.30am.)

Whilst there, I spoke to the lovely receptionist and she looked up my notes and has given me the original consultants name and his secretary’s number to phone on Monday. I will endeavour to find out why I haven’t been seen yet.

I suspect that because I happened to be seen by a visiting Professor from Dublin, rather than the local consultant, I’ve somehow got lost in the system. Yes, the Professor said it could be cancerous and that’s why it needed a biopsy to rule it out, but he also said he didn’t think it looked cancerous so it wouldn’t be an urgent appt.

Unfortunately, I decided to assume that no appointment meant it can’t have been serioys so I haven’t chased it until Friday, although after reading this thread, I’m now feeling rather annoyed with myself.

skullduggery I was put on the two week pathway and had the biopsy within the two weeks… I would get back to your GP and ask if they considered the lump a cancer possibility and if so can you be put on the two week pathway
They really were wonderful with me and just over a month I d had the first op and three or four weeks later the second op and have been cancer clear for 12 months now 🤞🏼

Terrible English just there! Hope you know what I meant 🤦🏻‍♀️

Several people I know on-line and one in real life swear by Soothe balm from Herbal Health. It’s such a horrid thing to suffer from.
www.herbalhealth.org.uk/product/soothe-for-people/

I’ve had it for years before being diagnosed and the gynae last March spotted a lump that he thought needed a biopsy. I’m still waiting for the appointment. ☹️