New to LS - start here

I am 26. For two years, I was misdiagnosed. Was told I had yeast infections even though no yeast was ever seen under microscope. Told I have vaginal psoriasis, bacterial vaginitis, etc. For two years I suffered and medical bills piled up and no one could ever help me. Finally, a gyn at my doctors office that was always booked up, had an opening. He took one look and said you have lichen sclerosis. I then went to a derm for a second opinion and she confirmed it. I have been prescribed clob, and other steroid creams and ointments and so far, nothing has helped. Sex is excruciating and afterwards, my vulva swells up and the pain is intense for a day or so. It has killed my sex life. Im glad to finally have a diagnosis and to have found this forum.. but anything anyone can suggest would be greatly appreciated... also has anyone ever tried "emuaid"?

Thanks in advance

Hello! 

I got diagnosed with LS over a year ago now. I normally manage it perfectly fine unless I get stressed... However, there are two questions I would love to ask all of you.. (First one is about the lovely period, so if you're a man.. skip that one)

1.  When it's simply 'the wrong time of the month' I can not wear tampons as this really seriously irritates my down belows, so I obviously use sanitary towels. This is absolutely fine, until it comes to the last couple of days of my period and the towel really flares up my LS. Has anyone else had this problem, and how did you stop it? It seems to happen every month and the itching on the last few days drive me absolutely insane!!! 

2. So before I got diagnosed, I constantly got the symptoms of thrush and UTI's. So they kept putting me on loads of antibiotics and stuff. However, since i was diagnosed my doctor told me that the thrush and UTI's can all come hand in hand with this condition. But now, I've realised that my bladder is incredibly weak and I'm constantly going to the toilet throughout the night. I was wondering if this was connected.... Any feedback would be great!

Thank you!

Diagnosed with LS in 2012.  It is horrible!!  I seem to have bad flare ups when I am traveling abroad.  Just this week I connected the fact that 3 of the last 4 trips to Europe I did, I had bad flare ups.  Just returned from Spain 2 days ago.  My trip was miserable because of LS.  Every time I urinated I practically screamed with tears in my eyes.  I have had a broken leg, ruptured disc, gallstones, also injuries from many falls off of horses.  The pain with LS is worse than any of those pains.  I care for a brother with dementia (and alcoholism) and help with an aunt with cancer.  Has anyone connected stress to flare ups?  I'm just trying to sort out WHY.  I'm miserable.  I've been on a new steroid ointment for a week and a half and it has not helped at all (have been on Clobetasol and now Betamethasone Dipropionate.  Neither is bringing relief.  Thanks for any input on relief.  I'm just now starting to read this forum.

Patricia

Hello All !  I need some insite advice help !  I was misdiagnosed for over a year before They did a biopsy and diagnosed me with LS in April 2015. Ive been on Clob almost the entire 2 years.  so to my shock and disbelief when i looked below my lips are GONE!  I am at a loss for words here. I don't even know what to feel.

what will happen now? wI feel like my vagina is vanishing.  I am seeing a specialist in November that i have seen before but she assures me that LS will not affect my life..... Im not feeling to confident about his. 

What else can vanish down there ?  is my clit next?

Hi, I've just just been diagnosed with this and am utterly devastated and freaking out. 

After almost a year of symptoms I saw my GP an de I've been prescribed a corticosteroid cream but I'm wondering if I should also try the baking side and/or borax solutions too? Is it advisable to do both or just one treatment at a time? And do you do it twice daily or after every time you go to the bathroom? 

I'm under 30and just married and LS has destroyed my sex life with my husband. 

I have some fusing and so far the corticosteroid has stopped most of the itching and the fissures/cuts. But what's really making me panic is the shrinking of the vaginal opening. What kind of lubricant is best? 

Please any help and advice would be so appreciated. My doctor didn't spend any time talking with me about this. :'( 

Hi I am Debi and I've had LS for 3 1/2 years. I had a biopsy for diagnosis. I use Clobetasol twice a week for prevention and when I have a flare up I use it twice a day until it clears up. I've also been using Emuaid First Aid cream. I hope my story helps someone.

I first noticed symptoms in early 2015. It was a very small sore spot on my labia. I noticed it because it stung when I peed. A few months later i noticed it again. Almost a year when by it was back... except I realized the spot had never gone away, I just only noticed it occassionally. I told my doctor and after a couple of tests she did a biopsy to rule out cancer. No cancer. But after seeing 2 different doctors I now know it's LS. I was given Clob which I used for a couple of months. The spot would bleed, then thin white skin would grow over it. Then it would break open and bleed again. The clob seemed to have no effect on it. But the good news was it was just small spot and did not itch or hurt. 

But a year ago that changed. The itching started in different area and the small spot got much bigger. Now I am realizing I may have had other symptoms for much longer. A dark discolouring to the skin that has spread. Some small bumps here and there. Mysterious itching that comes and goes.

I am 49 had been on birth control pills for over 10 years. I stopped taking them last spring. There definitely seems to be a hormone connection with LS.

Besides the clob I have tried a Chinese herbal spray which provides some instant cooling relief but no healing to the skin. Recently I paid $50 USD for Eumiad but so far it doesn't seem to do anything. I might be using too little and not often enough. I am going use up the whole jar before deciding. 

For me the cracked bleeding skin area is my worsted part. The area is raised like a bump now too. I really don't want to get any bigger or develop other sores.

From reading this site I am going to try borax next. I'll be posting in some threads soon!

Thanks for being here :-)

Visited my doctor and she confirmed there is a small area on upper right side that looks like LS. But she and I both agree the bigger area on left side does not fit the LS symptoms. She is referring me to a Gyn for a second opinion. I am no longer using Clob on that area, as it cracks and bleeds a lot and if we don't know what it is, I'd rather not medicate it. 

Luckily through the initial testing and biopsy we know it's not an STD or cancer/precancer.