So depressed :-(

Oh dear George I was saddened to read your post sweetheart and so sorry that you have cancelled your wedding. That is tragic. 

You know George this ugly 👹condition can be managed. Woman who have it and research has shown it is linked to our autoimmune system. 

What is your LS consultant prescribing for you ?? 

I have had LS for 17 years now and in that time experienced several years in remission.  I have got fusing and my clitoris is hooded but it still ‘works’ 

I chose to go with the approach I would manage LS not it manage me.  on good days that’s great but when you feel down it is hard to get past the pain and discomfort of it. 

I try as far as possible not to have sugar, dairy or chocolate.  Still drink red wine (for medicinal purposes) 😉 but not copious amounts  Eat lots veg fruit pulses etc., drink water at room temperature 

Choc sugar and dairy all foods that overheat our bodies. LS thrives in over heated bodies !!! 

I have tried lots creams potions and ointment but lately found to keep it simple works for me. 

Clobetasol I find too intensive and it actually made area more sore.   My consultant said to go down a notch and recommended Betnovate ointment which isn’t so strong and certainly works if I have a flare up or discomfort. 

I wash with Dermol 500 and sometimes use it to moisturise after going to the loo. I bought a portable bidet (off Amazon) ?? it. 

All in all George it seems lots of trials and errors but know that you will find a winning formula for you and life will suddenly See a whole new You. 

Sending lots HaPpY Healthy vagina wishes George   

Take care 

Keep in touch with us 

Love 💖 X

Just a thought, george32756, my GP told me that steroid cream (clob or similar) can reverse the fusing and it seems to have happened with me in one area.  I suspect if fusing happened a long while ago the steroid might not be able to do this but this might give you a little hope? Also you could go into remission and no further fusing will occur for a while. As I understand it remission is more common for younger women than post-menopausal like me. I hope you have the steroid to use.

?I think it's tragic you have felt the need to cancel your wedding and really feel for you but there may be some relief to come. 

Morning George I have re read your post several times and your women friends and family will certainly understand this hateful condition.

As you inform them that is recognised to be linked to our auto immune system   That men women and sadly children can suffer from it.  

If you were to tell your friends you had been diagnosed, say with diabetes for example you would get their support and understanding. This condition will get the same response because they are your friends and family and love you ??

Even if you choose to discuss maybe with one or two women it will give you the confidence not to bare this alone.  You could be surprised,  maybe they already know about LS. 

Your fiancé is special to you and you to him.  Otherwise marriage would not have been arranged to cancelled 😨 together perhaps you could enjoy, for the moment a different kind of intimacy.  Probably you do all the work 😉 but finding out about each other and enjoying the closeness that can be achieved is amazing ????

Please George do not be alone in your head with this 👹 condition and it may be you will feel relief so have less stress which can only be good in the long run 

🤗X

Dear George, 

George, please please go get vitamin D3 today at least 5,000 and take 3X a day, also pickup Vitamin K2 which is needed to move calcium to the right places apparently.  I foudn one woman on this site form a couple years ago who went to a naaturpath who told her about Vitamin D deficiency and autoimmune diseases. This was jsut before christmas and going to visit my daughter a 22 month old grandson. Oh my GOD! If I hadn't oudn that one comment I don't knwo if I could have stood the holidays 4 hours away from home. George, the itch as GONE in 2 or w.5 days - gone.  I still had to deal with the open sores and those cleared up within 2 weeks. BUt I think acupunctur also helped with this 3 week process.   Now things want to slide backward so I am taking allthee lovely ladies advice and "biting the bullet" of eating a mostly anti-inflammatory diet.  but FIRST as I read and read, I've come to realize - or remember really, that skin ailments of any sort represent a overtaxed LIVER.  SO, I've just started on Milk Thistle live cleanse for a couple days. 

SO, dearheart, get your whole family in on the new refreshing super healthy for lifelong HEALTH of their own, HEALTH FOR LONG LIFE EATING PLAN.  LOTS OF KALE Steamed, drizzle Flax oil on it YUM! walnuts YUM. non-inflammatory meat, like turkey, fermented dairy only, like kefir, plain no fruit sugar, yogurt, ditto. RAW cheese might be okay but LISTEN very carefully to the small signals of our body. Teach those precious 4 children to learn how to listen too.  Make it a game. 

I have started comparing notes on the autoimmune diets I see and difference between that and the anti-inflammatory diet suggestions.  I personally have always been a "everything in moderation gal".  we might hav to START off with a CLEAN HOUSE highly restrictive diet - see if even a week of that is enough. But it makes no sense to me to tell me that blueberries, a highly nutritious anti-inflammatory fruit should be on the NO list because it is fruit?!  I notice that berries are on the okay list of some lists. Just for some suggestions. 

RIce is not inflammatory, I've learned, so maybe you can get your kids of reading age to look up the diets of those cultures that LIVE on RICE as their main stable.  ONe image in my mind: When I was doing a one week summer camp for intuitively gifted kids, one year we had a family come to the states form HONG KONG! The mother brought with her a large family sized rice cooker for the 4 of them and they brought that to the table with them every meal - every meal. of course they found vegetables on the buffet at the resort... but geesh.. american's overcook their veggies big time.  

I just know that you being a "foodie" will find plenty o enticing recipes - that everyone will eat. get your kids to look up the benefits of each vegetable's mineral content - wow. 

I have told my family and some close friends and although they can't understand what I am going through they are supportive and just let me talk.

I understand how you feel - I feel as though my husband got ripped off, and I am damaged goods  

Oh George, someone wrote above that we live in a sex obsessed culture and they are right. Talk to your partner. There's more to a good marriage than sex. I've knowingly had LS for 6 years but had symptoms longer than that, I'm 51, my husband is 47. we haven't had sex for a long time but he says that there's NO WAY that he'd give up what we've got, a loving relationship, a strong friendship, two gorgeous children and a happy home. He'd rather give up sex than all of that. Give your partner some credit for dismissing the Hollywood version of a happy marriage (none of us look like the current favourite starlet either, but we don't think we're letting our husbands down on that score do we? And I doubt many of them are George Clooney either!!!)

When I was first diagnosed I also got obsessed with the idea that he'd drawn the short straw by ending up with me, and then there were suddenly a few articles in the paper about how many couples were living in sexless marriages for all sorts of reasons, and the statistics are really high, something like 25%. Not all men have a high sex drive. People get ill. People just stop for no particular reason.

My friend also has LS, when she was diagnosed her doctor told her one in 50 women get LS, she feels the statistics are under-reported because many doctors don't know what they're looking at. I got a new doctor last year, she's a skin specialist and she says that she thinks the statistics are even higher. So even if you do leave him, the chances are pretty high that his next partner will get LS at some point too. Will she leave him? And maybe he'll end up in the same boat but not as happy as you are together now?

Please read my post with him, and talk about it together. I'll say it again, there's SO much more to a good marriage than sex. We've been sold a myth. Make your own happiness together, in a way that suits you both, and what you do or don't get up to is nobody's business but your own.

Hugs to you both

Bridge and Husband