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Awareness of Lichen Sclerosus

(17 Posts)
chickkygran Thu 05-Dec-19 11:48:36

I was diagnosed with Lichen Sclerosus earlier this year. It’s a chronic skin condition which generally affects the genital areas. There has been another thread about this earlier this year, but I felt I wanted to highlight it again as it’s often misdiagnosed and women are treated for thrush. It can affect children, men and some people have it their entire life. It is commonly found in postmenopausal women. Medical professionals aren’t sure what causes it - possibly autoimmune, genetic, hormonal. It’s important for the condition to be treated, generally with a potent steroid, as it can lead to vulval cancer.

My reason for starting this thread to find out how many of our gransnetters are aware of this condition. I’ve spoken to 8 of my friends and none of they have heard of it. Also, if many of us are suffering it (I respect if you prefer not to discuss your health) . I know there are several women on the site who are suffering and I found a very useful FB support group through the previous thread.

Arcylady60 Sat 14-Dec-19 11:40:31

I was diagnosed with lichen sclerosis 2years ago. I had suffered acute itching and soreness and uncomfortable sex but just attributed it to being post menopausal. When I had a smear test my gp was not happy with skin in this area and referred me to a dermatologist. I was diagnosed with LS and prescribed a low dose steroid cream to be used initially for two weeks and then to use when I had a flare up. I don't get flare ups that often, but it's important to use the cream as soon as you do feel something is starting. It's important not to use the cream too often as it can make the skin thin.
It's been a great relief to get this under control. Thank goodness for that smear test!! 🤗

Fiachna50 Sat 14-Dec-19 13:07:25

How do you tell the difference between this condition and Vaginal Atrophy?

mumofmadboys Sat 14-Dec-19 13:14:48

Lichen sclerosis is a skin condition ie more on the outside and vaginal atrophy is more inside. Vaginal atrophy responds well to local oestrogen cream and as has been said already LS needs a potent steroid cream.

Sunlover Sun 15-Dec-19 01:07:36

I was diagnosed around 5 years ago. My GP prescribed a steroid cream which I use once or twice a week. Luckily I rarely get flare ups as then I'm in a lot of pain. Reading up on this condition I realise I have only had mild symptoms.fingers crossed I can keep it this way.

phoenix Sun 15-Dec-19 01:11:39

Another one here. The steroid cream seems to keep it under control.

Humbertbear Sun 15-Dec-19 09:57:09

I have lichen planus. I’m not sure what the difference as the symptoms and treatment sound similar. It was originally diagnosed by my dentist as you get a grey substance in your mouth (where he was looking) and in your vagina as well as soreness. I also get red, itchy outbreaks on my skin. I seem to be more prone to these when I am under stress (which is most of the time these days).

Skier Fri 03-Jan-20 05:00:31

Hi, I have LS since last year. Using high potent steroid oniment and emulsifier to moisturise skin. I agree that this condition is misunderstood and often misdiagnosed. In my experience it also carries a stigma. I have felt judged by one health professional. It has, thankfully responded well to treatment. I have been told it will remain for life and to expect flare ups. I apply the steroid even though I have no symptoms twice weekly to reduce my risk of flare ups an lower my cancer risk. The cause is not really understood as far as I can tell, although I was cycling a lot before the initial flare-up.

sharon103 Wed 12-Feb-20 23:51:45

Another one here and a poster on the earlier thread.
The steroid cream is very good. I seem to have more itching when I over indulge in sweet foods like chocolate and ice cream, I don't know why that is.
Yes it is for life I'm afraid there doesn't seem to be much research into this.

grannyactivist Thu 13-Feb-20 00:11:06

Someone I know suffered with this for a long time before getting help. She has now got a diagnosis and finds the cream a great help.

sharon103 Thu 13-Feb-20 00:29:27

What I fear most of all about having this is when I get really old and perhaps go into a care home, staff don't know I've got it and I sit there constantly scratching my Jack and Danny.
Ooo dear!

Elrel Thu 13-Feb-20 00:55:23

I was so scared 10+ years ago when I noticed changes in both skin colour and shape of my labia. I saw a gynaecology consultant privately who was very reassuring.
Like Sunlover I am fortunate to have a mild version. At the time there seemed very little awareness of the condition.

sharon103 Thu 13-Feb-20 01:04:34

I had never heard of it and haven't heard of anyone I know with this condition. Unless like me they haven't told anyone.

Fiachna50 Thu 13-Feb-20 09:40:25

I was aware of it, but to be honest because things like this and vaginal atrophy are not talked about , it would be difficult to guage how many people are actually affected by it. I did not know men get it and did not realise your dentist could diagnose it. That is useful to know.

Sunlover Thu 13-Feb-20 10:42:10

I was diagnosed 5/6 years ago. Lately I’ve been a bit lazy ( been symptom free)and haven’t been applying my steroid ointment in a twice weekly routine. Then a horrid flare up. So sore. Agony to pass urine. Back to applying twice a day for a week and now symptom free again. Must stick with maintenance routine!!

denyr1 Wed 15-Apr-20 13:41:06

I have been seeing my gp for around six months and she didn’t have a clue what it was. She now thinks it’s Lichen Sclerosis and has referred my gynaecologist. However she told me to stop using the steroid in the mean time which caused it to flare up! Not sure how long I’ll wait for an appointment. What treatment do others do?

Spiral Sun 09-Aug-20 15:23:46

My lichen sclerosus started 5 years ago. I was at the end of a relationship and the last time we had intimate relationship I had a sharp pain in a certain position. After that I was celebrat for 3 years and did not give it any thought until I tried to have intercourse with my new boyfriend. I knew something was incredibly wrong then. The pain was incredible. I had fusion. I had atrophy. Afterwards the tissue was on fire, swollen, and injured. When I went to my obgyn she had to use a child's speculum and it still brought tears to my eyes. I was diagnosed and given steroid cream and it initially calmed everything down. But after reading a bit about how steroids work I decided to only use it to stay out of the really bad place. Afterward I tried various topical treatments, hygiene products, and supplements with little to no results. Fast forward to last year in August... I had hurt my back and thought a session in a float tank might ease the tightness so I contacted a local holistic clinic through their website and made an appointment. I decided to browse the rest of their services and a treatment called The Mona Lisa Touch grabbed my eye immediately. It said it is the only thing that cures lichen sclerosus! I immediately made an appointment for a free consultation and proceeded with their protocol of 3 visits 6 weeks apart. And the healing began. Alas my situation had advanced to the point that it dis not resolve completely but I continued to to tissue and lymph work on myself every day (I am a massage Therapist). And every day I was going in the right direction but it was painful and slow going. The next chapter began just 2.5 weeks ago. I slammed my finger in the door of my truck and had to cancel a lot of appointments with my massage clientele. One lady sent me a text and said I needed to get into see her friend who invented a healing machine (!). I told her I was game and she had him contact me and on Monday I went for my 1st treatment (protocol = 3days in a row + 21-23 days off for 3 months then review progress and create a maintenance program). I also bought a product called MSP to spray and take orally to expedite the healing (and for the pain I was using a cbd ointment... I have tried a few brands but the one I am currently using is hands down superior). I had my 1st session the 19th July. I begin my 2nd round 10 August. And already my lichen sclerosus is 90% obliterated. The machine is called Energy Genesis. Google it. There are currently only 10 on the country. I am in shock. I am a real person. This is not an advertisement. I am not trying to sell products or promote services. I just want to share this with others who are suffering. It's not voodoo. There is science behind it which I won't go into because if you are interested you will research yourself. I have pictures which I will not post here but if it's something that would help seeing I would share privately. Please please please if you have questions I am happy to help.
Happy healing!
P.s. i haven't had intercourse in 5 years... my tissue is now healing at the rate of 1 day = 1 month (pre-machine). I am hopeful. It is healing the atrophy as well.
P.p.s. I have avoided using brand names but will also share if needed. I am really trying not to sound like an infomercial!