Is anyone getting treatment in the U.K.?

Ok will do thanks Fran, so nice to read the threads on this forum I don’t feel so alone with this horrible condition now x

We're all here sending hugs. You are not alone!

I really like Avocado oil too. And someone suggested normal olive oil.

 

Hi Alison - sorry to have to welcome you to the club!  Yup! your treatment seems about right ie there is no treatment for LS and, yes, you will be left to get on with it.  I keep reading that LS and LP usually spontaneously clear up after  6 - 12 months.  This is not true - I think we all just get sick of going to the doctors/hospital and being fobbed off with another tube of clob.  Track this forum for a year or so and try all the ideas.  Some will help you, some won't.  Nobody appears to have come up with a cure yet and the only "treatment" I have come across is acetretin, which has horrible side effects and no long lasting ones!  I await enlightenment from one of our fellow forum contributors and would love to hear from somebody with a long term fix.  

Am I normal ??? i have only a blob of fleshy looking skin on one side and an oval on the other side ...Thats what at the moment is sore and the skin grows but as i dry when i go to the loo I lose the skin again,the clob is stinging . any advice

 

Dilute some bicarb(baking)soda in some cool water and spray or can it on after passing urine then pat gently to dry.

Thanks will this promote healing ? What does it do and does it hurt.

It just neutralizes the urine so it takes away the sting. It isn't a treatment just acts to soothe.

If you are sore or itching it just eases.

Thank you I have had a bath with it in it helped ....i caught my self with a towel the other day and I think where my labia is shrinking .....i never knew about this happening until I caught my self and eventually looked I have taken the skin off a bubble like piece of labia that left.its fine to touch but when I pee omg .

I am scaring myself silly thinking it's cancer after reading on the internet all the time is that how labia go?

I am afraid that seems to be the way of it. I have very little labia left at all. I am much older than you I was only diagnosed 5years ago.

Hi Alison

it might be worth trying diluted borax. It can sooth and reduce any itching and I have heard it can keep it  under control. I have been using it for about 3 weeks and it is soothing and keeping my fingers crossed it is reducing any further fusing. I bought from Amazon uk about £5 got a small jar diluted in warm water (couple of teaspoons) and keep in the toilet for morning and evening use, I use cotton wool dipped in the solution as a swab really soaking the area. During the day I tend to use a cotton wool pad with espaderm cream on to stop dryness. I stopped clob over a month ago and have not missed using it. 

Perhaps you should try and see a dermatologist as they can examine you and put your mind at rest a little as you are worrying about cancer and stress will not help LS ( so I’ve been informed). I agree with all the comments, considering it appears LS is quite a common complaint my GPs and many know very little about the condition - even the gynagologist don’t seem very knowledgeable. I have a lady dermatologist and I see her every 6 months. 

Try not to let it take over your life, it is very debilitating and I too get really down about it - hope you soon feel better.

 

I don’t know how old you are Alison whether you are post meno or not, I am and have no minora at all.  I was so scared so I understand.  My gp has never heard of L S so was of no use neither was the hospital, I had biopsies but they said they don’t do follow up checks.  I got advice and reassurance from my local sexual health clinic who are fantastic, I wonder if that’s an option for you.  They had more knowledge and empathy and told me to use clob as a maintenance as and when I needed it and to you a natural moisturiser.  I just use clob when I need it.  They said a lot of the problem was also lack of oestrogen and I didn’t want to try HRT cream.  I’m not sure if your minora has fused mine just seems to have gone altogether.   You aren’t alone, a lot on here have minoras that have gone, hugs to you x 

Alison - I would go to your GP and ask to be examined. You can always refuse referrals to hospital, but it sounds as though you need to know what stage you are at and whether you need to up your steroid applications. Take heart that many of us on here have been just as frightened, but that sometimes you can slow the progress and even reverse any fusing with strict regime of steroid. Keep moisturizing all the time. Is vagifem an oestrogen cream? If so keep using that, I have found it has helped me along with steroid. Your GP should guide you.

Hi I am 52 went through menopause hmmm sometime in my 30's no periods since then .I take vagifem oestrogen tablet to help keep things moist .my LS is controlled and been no problem but but noticed the lack of labia when I caught myself when drying down there and made it sore.My go diagnosed it at first sight about 4 yrs or so ago.