New to LS - start here

We've had discussions about chlorinated public pools. I wouldn't do it, but if its important, plastter gobs of Vaseline on before you go in and get out of your wet suit ASAP.

Hi Hojo,

I was about your age when my LS began, but that's hindsight. I was diagnosed at age 61! Do watched Dr. Goldstein's presentation (linked above) and my main advice is don't have high-friction sex when you're at all uncomfortable. Period. I had many long periods of remission, lots of great sex way into my forties and again in my late fifties. I had two natural childbirths. If I could go back knowing what I know now I would be very careful how much sugar I ate and I wouldn't do the pretty heavy drinking I did for years at a time, different periods. And I wouldn't grin and bear it during what for me was painful sex!

This forum is full of support and good advice. The two nuggets almost everyone agrees on are: use coconut oil from the health food store to stay moisturized (but if you're sensitive to coconut oil, Vaseline is really just fine), and rinse the area with water and a little baking soda. The baking soda is good old-fashioned first aid, not magic and more is not better. 1/3 cup in a bath, 1 tbsp in a basin (I squat and splash), a pinch in a squirt bottle.

Be aware that yeast and LS have a relationship that can get into a downward spiral. The friction of sex can stir up yeast, especially in an environment of sugar consumption and a stressful life. I keep a tube of Canesten (over-the counter 7 day yeast treatment) and use a small amount topically and just inside my vagina if I suspect yeast might be getting started.

And don't use soap down there! They talk about Hydromol, an emollient cleanser (I think it's really a runny version of Vaseline), so if you need to do more than wash with water, there's that.

Cotton panties and loose trousers when you're flared up...

That should do it. Do start a discussion stating your youth – the majority of us here are post-menopausal (I'm an oddball lifer) but we do get lots of young women. That's the best way to quickly find other young women to share support with.

Sorry you're one of us, but glad you found us! We have the supplementary LS care info doctors don't have time to talk about.

Thank you so much for all that information! It's great to hear it from people that have been through it and it isn't just someone speculating what you feel. My partner is very understanding and I really avoid it while it's painful. I didn't know about sugar and alcohol so I will keep that in mind!

Honestly this has made me feel so much better finding this forum!! Thank you

So glad! The worst stressor is when we freak out after diagnosis. It gets easy after that. Bottom line – there are much worse things that can go chronically wrong with our bodies.

Oh, Jan, do go to the doctor. Many of us were diagnosed without a biopsy at all. Your condition sounds classic, very likely to be diagnosed with a look by a gynaecologist or dermatologist (even better if your GP can find you a vulva specialist). Most women with LS got it around or after meopause. Some of us got it early (I was 22 – I'm 63 now). There are much worse things and the sooner you start treating it the better. Watch Dr. Goldstein's presentation, linked at the top here.

You've come to the right place. Those wipes are BAD. Even soap. Just use plain water, or with a bit of baking soda in it (more is not better!) Watch your sugar intake and try not to freak out – stress is the worst thing of all for LS, as you may have figured out).

Glad you're here.

My first diagnosis at age 22 was herpes. After that I never had a herpes blister down there again, but always tore along the perineum and had soreness and later had white patches, atrophy and fusing. (I was finally diagnosed with LS at 61.) I believe there's a connection. They still don't know what causes LS. I'm trying to say it isn't either/or. If you were biopsied and only tested for herpes, and were positive, that doesn't eliminate LS. The test of the sample for LS isn't like just identifying a virus – they look at a cross-section of the sample for the characteristics of the various layers. If you'd been treating it with steroid cream for some time before the biopsy, then the symptoms would be suppressed and LS wouldn't be apparent. Maybe you should try to find a vulvar specialist, a dermatologist.

Anyway, once you have a diagnosis, you get the prescription and you're pretty much on your own, which is why we're all here – sharing tips on things we can do to soothe and prevent flare-ups.

Is the prescription the steroid cream? Thank you! Your post has made the most sense to me. I have never had a herpes blister. I may have it - but never had a symptom. I have been using the steroid cream since i was 27 and am 47 now (guess i have been dealing with this longer than 15 years). 

Hi hojo, I got LS when I was your age and just continued having painful sex and constant fissures until by the time I was 29 I was deeply resentful and depressed. I think I lost touch with the difference between pain and pleasure at some point. I'm 61 now, have two grown kids, had great sex for years at a time, I guess when LS was in remission. By now I see myself as basically allergic to sex. As long as I don't have sex, no friction, no bodily fluids, then my LS is calm and clear. If I had my life to live over I would like to have had a diagnosis and the steroid ointment when I was young, not at 61. Bottom line, if you keep trying to behave as if you don't have a problem, it will stay flared up.

Thank you for the advice and I am sorry that that is how you feel. The thing is I have stopped having sex since my diagnosis in January and have tried everything to reduce the flare ups. But when I go back to the doctors I am brushed off as young and unimportant...

That really sucks, hojo. All I can say is my vulva were in an awful state like yours when I was finally diagnosed, like yours. And it really did take most of two years for it to settle down. Its been a few months since my last tear and I still have white skin. Good for you avoiding sex. I become frustrated reading about women using lidocaine.