Hi, I am new to this site and am desperately wondering if anyone has LS with no itching? I went to my GP early last year with a tiny cut and whilst examining me she casually announced I had a 'bit' of LS. I was given a fact sheet with a tube of Betamethasone valerate 0.1% cream. I have only used this occasionally and very sparingly on the white pearlised skin between my vagina and buttocks - I really don't know whether I should be using it more regularly. I still have no itching and only slightly sore around the vaginal entrance after sex. The white area does seem to have spread slightly to this area now though. Would regular use of this cream help with the white patches or would it be detrimental given that I barely have any symptoms? I'm so scared of doing the wrong thing and becoming obsessed with the magnifying mirror! Any advice would be welcome.
Hi, my advice would be do everything you can to manage it now. I had a normal sex life (I'm married with two grown up children) until 2009 when my LS started. I've not had intercourse with my husband since then. My LS was not diagnosed until 2011 by which time it had spread. I have recently had surgery and am hopeful that I might be able to have intercourse again. Don't take it too lightly - you can control it. The consultant who performed my surgery is the most informed doctor I've met - ive seen several consultants in the last few years. She told me that I had received the correct support initially it would not have progressed as it has - it could have been managed. I know you might think I am exaggerating but it had been a real battle for me to try and resolve this. Do everything you can to prevent it spreading. Best wishes and good luck,
I have never had much itching ever either, I dont even have white patches much. I just have red inflamed skin with bumps and cuts that flair up but I was diagnosed with LS by biopsy after a year of going to Gynos with no answer.
Im trying my best to keep up with it. I cant let up a day or it gets painful. So dont let it go untreated. It will progress.
Thanks for that Ashley Jo.. I have had barely any information at all from my GP about the future control of it. I have just booked to see her tomorrow and will ask for a referral to someone who knows more. I will start using the cream again today. What a horrible disease, it does scare me. After years of being in a bad marriage I am finally happy with someone else and now this to contend with! Hope you are well now.
Ok thank you Charlotte I will definitely seek further help and start again with the cream today. Good wishes for the future.
Hi Ashley Jo can I ask whether your surgery was relating to LS please
Kind regards
Stephanie x
I would put some on. The clob is used reversed it back to pink. Hopefully yours will too if you are just in the beginning stage. I too don't have itching but have atrophy due to menopause. I use yes moisturiser now which seems to help. I have the erythema and soreness too,
Hi, i havent been diagnosed with LS waiting to see the consultant the end of may, who prevously said she would do a biopsy when i next see her., my symptoms are the same as yours, i don,t get any itching ,it looks red and inflamed and feel sore, its not like it all the while i have grazes too, and sometimes white discharge. ive also tried hydromol ointment the consultant perscibed but it irritates it as others have done.
Hi...hard to know what to do when you first diagnosed and the outcome, but I would also encourage you to keep up the treatment, which should probably be the clobetasol cream. Because, just as a warning - it seems the LS never goes away even with NO flare ups or itching. My story is that, very worryingly, I've only just found out from recent examinations in a vulva clinic - that I should have been using the clob regularly, even though I have'nt had any flare up for some years - the result is my anatomy has altered, I have almost lost my clit through fusing and one labia has almost disappeared. I was first diagnosed on 2010 (I was 63) with a bad flare up, abcesses, itching and pain. Took a while to diagnose, but when it was, I was put on clob, twice a day for a month, reducing to once a day and eventually twice a week, as the flare up calmed down. I then used it sporadically for a while, but with no discomfort or flare ups I thought it had gone. But the LS was clearly still there and doing its stuff silently, it never goes away.... Now the wonderful specialist nurse - the medics know much more about LS now - says I should keep on treating a couple of times a week as maintenance, probably forever.
But I am researching other ways of treating too, and finding this forum really helpful.
Thank you Charlotte- any info is helpful to me and in fact all of us. I will let you know what my gp says after tomorrow. X
Hi Sue - what is atrophy? Is that where the white patches are? Mine has only started since I've gone into the menopause too. Along with a rectocele .. oh the joys!
Hi Philly2, that's terrible that you weren't told this in 2010. I'm not sure if I've been affected with any fusing as I really can't remember what I used to look down below anyway! I've never been able to see where my clitoris is anyway so wouldn't know if it's fused or not. Please let me know if you find out any more useful info whilst you're researching. I've been trawling the net too - have you heard if the emu oil is any good? I have been to see a close friend today who has the same thing, plus her sister (she is very badly affected by it). They also have another friend with it too so we we're thinking that this condition is probably not as rare as they say it is.
Hello Stephanie, yes it was. The skin had fused together. The procedure was completed to try to create a 'normal' vaginal opening. The LS caused the fusing of the skin. This happened very quickly in the initial stages of the LS before it was diagnosed. If you are thinking about surgery or requesting it let me know and I'll tell you what I did...because I actually approached my GP and requested help in this respect. Kind regards, Ashley Jo x
Hi Jill, thanks for your message and yes, thanks, I am fine. Good luck with the GP appointment. The problem is that (I think) most GPs do not know very much about LS - it's not really their fault. Don't be afraid to use the cream; the impact of not using it can be much worse. Don't be scared either. Try to learn as much as you can now. When I was first diagnosed I couldn't believe it, I had never even heard of LS. A lot can be done but you need to know..... the problem is that a lot of doctors don't know. The consultant who has helped me recently (performed surgery with a plastic surgeon) has been fantastic. I'm happy to give you more information if you want. I feel that given where I have been I am now in a more positive position. It will never go away but you can manage it. Good luck tomorrow, Ashley Jo
Thank you Ashley Jo this condition is such a challenge for everyone suffering with it. I am glad the surgery helped in your case. I am currently in a position where my perinium is split completely and I am trying to manage it. I have spoken with my LS consultant who is a Prof of vulval diseases and surgery is an option, but the last one !! I have had LS for 16 years and quite honestly I don't believe anyone really knows how why or when this condition reared its ugly little head on woman !!!
My Prof who is quite candid said as there is no funding to research this disease the professionals learn from us who are quietly
trying to get control of their LS by using standard steroid ointment and trial and error alternative creams 'allegedly' for LS.
It is all a bit of a downer to say the least.
I wish you good results Ashley Jo
Kind regards
Stephanie x
Hi, try baths with a few drops of lavender oil to sooth. Also, if you can ask to have Epiderm ointment prescribed (as well as steroids) this helps. Also ask about having a special shower gel - don't use 'normal' soaps and shower gels - use the Epiderm one. I didn't do this until recently when my current gynaecologist told me - none of the previous ones have given me as much support. Good luck, Ashley Jo
Thank you x
Hi, do you ever lose any discharge, I sometimes lose a white discharge, it feels so uncomfortable, its like having full blown thrush, x
Hi, no I don't have that but I wonder if you have thrush as well which would explain the discharge?
Goodness, there do seem to be more people affected, or maybe they are just coming out of the woodwork - no one ever really wanted to talk about it before, though it has been around for decades.
I've only ever used Dermovate steroid ointment and aquaeous cream for washing - could also use Hydromol. And I've been using e-oil for softening. But have a look at the thread 'Progress' - there's more experiences there - and the Borax thread.