Recently diagnosed with LS
Posted , 5 users are following.
Hello there folks
I have just been diagnosed with LS ( hypothyroid too )and have done a little looking around at research etc. I wondered how my treatment so far compares with others.
I have some atrophy already and it was symptoms of this that I went to the Dr about. I had also had itching for years but the only time I tried to see someone about it I went to the sexual health clinic and they didn't even examine me as I was in the wrong place apparently??? My GP didn't prescribe Clobetasol, opting for a weaker treatment, bethamethasone valerate 1% instead. Her advice was to apply for 4 weeks every night and then to reduce down to once a week. I will be seeing her again in a week or so and will ask her to examine me again, see how things are.
how does that compare to others treatment, state of symptoms etc?
Any reply will be gratefully received. Thanks.
0 likes, 13 replies
mary09950 susan39248
Posted
susan39248 mary09950
Posted
Lodge susan39248
Posted
I suffered with soreness, itching and quite bad atrophy for a few years before I was eventually diagnosed with LS - sex was so painful that it just wasn't worth trying.
I wasn't prescribed Clobetasol either. Gynae prescribed a weaker steriod cream called Locoid, which I had to use once a day for 9 weeks and then as and when needed. Sometimes I don't need to use it for months and other times quite regularly.
Have to say it worked very well and I suppose it is better if you can get away with a weaker strength steroid cream.
Sex is still a distant memory though, just can't face it hurting
susan39248 Lodge
Posted
Hi Lodge, how depressing, it sounds like there are still residual problems that haven't been dealt with? I thought they were all about making sure that any sexual life got back to normal. Regarding the ointment, 9 weeks is twice as long as my GP suggested, sounds like I'm doing the right thing getting myself back in her office. Do you just use the cream if you get an itch? Thanks for posting a reply. Sue :-)
helen34256 susan39248
Posted
Hi, I've had this horrible disease for over 6 years. had the itching for at least a year before
until I felt very sick,went to a Gyno I had an open sore from scratching I guess. Did a biopsy
came back with Lichen Sclerosis. Prescribed Clobetasol, used for a few months until I found
out it thins the skin. I think the skin in that area is already thin, I didn't want to thin it any more.
Searched the web, found Perrins Naturals Crème Complete, stopped Clob, started using the
Crème Complete until things improved, now only using Borax, 2tsps. in 4 cups of water
shaken well, put in a bottle & use it 2 x's a day after bathroom visits. I now sometimes use
once a day. Also I use MCT Coconut Oil to moisturize. So far so good. But there is no cure.
Just hoping it doesn't get bad again. I hope you find relief with something that will work for
you. I kept trying until I'm happy with the Borax.
Good luck to you
susan39248 helen34256
Posted
My concerns are that if not monitored/treated appropriately that the condition could be working away at a deeper level, affecting structure, even though there is no itch because the creams have controlled it. Is this what can happen? if there are no spots/white areas, does that mean the condition is not active?thanks for your help with this.
susan39248 helen34256
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sheila37434 susan39248
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According to the British Assoc of dermatologists clinical guidelines advise clobetasol as the line of treatment. I recommend you also watch the webinar of the American LS specialist that is on this site . He says as LS causes thickening of skin layers sufferers don't need to worry about skin thinning as this is a desired outcome of treatment and he says a lot of GPs are ignorant about this so continue to keep advising caution with using clob
Hope you get the info and help you most need.
I also use centraban every day to moisturise and prior to sex.
I also found when I was on holiday swimming in the sea my symptoms disappeared completely!
susan39248 sheila37434
Posted
Hi sheila37434
thanks for that info. I have watched an American Dr talking about it and that is what made me wonder that perhaps I wasn't getting the optimum treatment. I found the information about how the itching mostly effects pre-pubertal and post-menapausal women interesting. best wishes, sue
chicks susan39248
Posted
Well I am wondering how your cream has worked for you so far. If it has worked, and continues to work when you cut it down to once a week, then perhaps you are on the right track. There are so many suggestions of all kinds of things you can use and do on this forum and I suggest you read through it all. I have suffered for over 30 years but I never looked at any forums or spoke about my problem to anyone and up until about 6 weeks ago I thought I was the only woman who had this problem!! I stopped using steroid creams about a year ago as my skin was so thin and my gynie said to use a baby cream called Desitin. It does work but it takes much longer for the itch to stop and it hasn't been a good year for me. I found this forum and it has been so useful and so good to have support from so many other woman who have the same problem. A few weeks ago, on the advice of a couple of woman on this forum, I started to use a mixture of 4 tablespoons of Organic Castor oil, 1 DROP of Lemon Grass Essence Oil, 2 DROPS of Lavender Essence oil. It it like a dream come true as my symptoms have stopped and I feel like a new person. If you want to try this then use a small dropper (I used one from a nasal spray) and it is critically important that you don't exceed the drops stipulated. A few woman have commented that the mixture burns but I am convinced that it must be because the drops have been exceeded or the dropper they are using is too big.
Good luck!
susan39248 chicks
Posted
Hi Jan, yes, the internet is a marvelous thing :-)
My GP didn't give me a follow up appointment but referred me to her own gynae clinic. Having read what this condition can do, I decided I wanted her opinion as to whether there had been an improvement in the skin, so I made another general appointment in the meantime. Is it a dermatologist I need to see, rather than a gynae Dr? At present, I am using aqeous cream for washing,which I find very soothing and the itching has gone. I think I'll stick to what I'm doing for the moment but will keep the essential oils in mind. Do you know whether the LS can have an impact on bladder control/frequency?
thanks for messaging. best wishes, Sue
chicks susan39248
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I forgot to mention Sue that I haven't had any issues with my bladder or frequency and I have had LS for over 30 years.
Jan
chicks susan39248
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Strangely enough it was a dermatologist who first of all diagnosed my condition! I had been to see him for something else and mentioned the problem I was having "down there" and he asked if he could take a look. He then proceeded to take a book out to show me photos and told me that I had LS! I can't remember if he prescribed anything or did anything about it... too long ago for me..... but I continued to see various gynies about the problem.