Just joined. Had LS for 25 years
Posted , 10 users are following.
Hi all
I've just joined tonight. Not really sure if this patient site is UK based or global. I don't suppose it really matters.
Although I came on here looking for some help really, I can see the LS forum doesn't appear to be all that busy and many people are asking for help and not getting too many answers.
It'd take me ages to write everything about my experience with LS so I just wanted to say that if anyone would like a bit of help with anything then I'll come on here often and try to answer any questions. It's very scary looking at things on the Internet and my heart goes out to anyone young who has just been diagnosed and is freaking out.
The Internet and forums are an amazing source of help and support but please remember this.. Every single person is different. Some things work for some people, other things work for others.
I was diagnosed with LS from a biopsy when I was about 21. I'm now 47. Sometimes I can go for three or four years without symptoms. The main thing I've realised is that I have to have a virtually sugar free diet as this condition makes you more prone to yeast infections. Once I get a yeast infection it can take 1 or 2 weeks or sometimes a couple of months to fix. After it's gone it often takes six months to a year for the LS to get back into "remission" again. So, looking after yourself when you have LS should be a lifestyle.
I use hydromol bath shower emollient to wash with, Dermovate then trimovate cream when I get a flare up. Alpha keri oil or organic coconut oil for moisturiser/barrier. Sometimes when I'm in remission for years I don't use anything at all. Only washing with the hydromol
Please stay positive and look after yourself
I'll stay in touch with this site and try and answer some questions
1 like, 4 replies
Indi22 mimi24712
Posted
what did you find the be the game changer for you? where was your pain? I have severe pain in the opening of my vagina have had this for over 10 years nothing has helped. i work with a naturopath now and take many supplements, am gluten free and vegan and yeast free, but need some other suggestions. thanks!
marcia55109 mimi24712
Edited
I'm 56 and just got diagnosed with LS. I also found out my mother and sister have it too. My main question is what type of underwear do you use that won't aggravate the skin? Does the thin skin ever toughen up?
donnadee59 marcia55109
Posted
I'm recently diagnosed at age 62 and also have this question. My doctor suggested going commando under my nightgown. I went to the guy section of walmart and found 100% cotton boxer type shorts that are loose and comfortable. i go commando under those, but i wear these under short dresses and no one knows the difference as they think I am just wearing normal shorts under my dresses. i do wear pants, but in the summer, I am trying to wear loose clothing and dresses more.
I have acid reflux, so my bed is elevated, so I have a tendency to slide which causes 'wedgies' from any underwear that I used to wear. this really is why i got accidentally diagnosed, as i saw my doctor because of the raw spots from the rubbing of my seamed underwear. i got lucky in a way because my doctor noticed my LS.
mercy864 mimi24712
Posted
i have this for more that 10 years i feel like you . i been using every thing in that i hear about . i have this no only in my private parts but in my body too . the nights they are terrible the ichy is really bad . im trying to folow a diet that will help me .im 78 years old actived but this slowing me down . I dont sleep .please give me some ideas if you can thank you