Posted , 9 users are following.
Recently been diagnosed with LS and have clitoral hood almost completely fused
Could this continue and completely cover my clitoris and stop me being able to wee? Am so scared any advice would be appreciated
1 like, 26 replies
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Wero Mariesm
Posted
Hi there, try not to feel so scared, you will get a lot of good advice and support
from this forum but remember that everyone has different experiences and I have learned
not to become dispondent when something working miracles on one person
does not work for me.
I personally have taken a little bit of everything and adapted it to suit my own condition.
I also have extensive fusing of the labia and clitoral hood. Initially I have absolutely
no doubts that steroid treatment as prescribed halted the condition and addressed
the symptoms of itching, skin thickening and lesions. However, I now only apply it about
once a week as maintainance or if I get a bad flare up. I have 1 bath a week with a cup of bicarb and
and one with Lavender oil. I wash and shower in between with Dermol. I use coconut oil as a
moisturiser several times a day and white soft parafin if I have open sores.
I have been given a dilator to stretch the vagina as the entry has become very tight, this is ongoing
and initially I was mortified but hey, I have learned to have a little fun with it. 😉 (And it is working)
I think, although it does happen, it is rare that fusing interferes with peeing and at one point my urethra
was almost covered but is now exposed again.
The condition requires constant management but you can live with it and control
it. Find what works for you and get into a routine. Try not to stress as this can
make it worse.
Look after yourself and good luck.
j02359 Mariesm
Posted
Please don't worry about not being able to wee - think about it, because we do it all of the time, it won't actually fuse over. My consultant told me that in all her career she'd only come accross one case of this in a very old lady who had never had any treatment for her LS. Every best wish. PS my consultant was also very alarmed about the use of borax and said that clob was safer.
hanny32508 j02359
Posted
It takes indeed a long time before you're unable to wee. However, in my case it did happen and it wasn't a pleasant experience. I ended up in the hospital for what the gyno called a dilation procedure. (no cutting involved) All was fused, but a pin hole left that was stretched. After that procedure I had to keep stretching it myself, using an ever bigger size dilator. (they come in sets of various sizes)
?The treatment till that point had been clobetasol only. And, I don't think that being in my early sixties was that old.
?Because I was afraid of it all becoming infected somehow, I started to treat with warm water in which I dissolved a small amount of baking soda. That's how I discovered that baking soda ( and later borax) can turn things around and make all this fusing disappear.
?Just wanted to let you know. My gyno says: Keep doing what you're doing. All looks very good.
j02359 hanny32508
Posted
hanny32508 j02359
Posted
Sorry to have been 'too straight forward'. I wish that there was more openess towards LS. ?Originally I was told that LS is a 'rare' skin disease.
Is it?
?I was so greatful for this forum. It told me that I wasn't so 'rare' and that, for me, was half the battle. I treasure the openness and very practical help. Though it's still a puzzle what causes this disease. Together we manage much better, and have figured out some very helpful extra treatments to make LS liveable.
?Keep well.
mary09950 hanny32508
Posted
hanny32508 mary09950
Posted
Later, after the fusing gradually let go with the help of baking soda baths and rinses, I had frequent bladder infections that were indirectly caused by LS. But since all fusing leftovers, with the help of borax, are gone now, that problem solved itself as well.
Further dilation of the vagina made intercourse possible again. It was a long process, but worth the effort.
cheryl33619 hanny32508
Posted
I am using baking soda and borax as well I was just diagnosed so I'm going to see if the little bit of fusing that I have will dissipate thank you for this advice it is very helpful I do not like steroid cream or using it at all I'm afraid of steroid cream
cheryl33619 Mariesm
Posted
I have fusing but I am attacking this with baking soda and borax....I was just diagnosed 2 months ago and I must tell you I have learned so much from patient it is the best open Forum discussion group I have ever been in contact with so keep doing what you're doing I love it and I hope to rectify this problem also I am starting Chinese herbs and acupuncture the Chinese believe that it is caused by the liver so we will see I will let you know my progress
Guest cheryl33619
Posted
Hi, I have read about LS & LP being connected to the liver, I have a fatty liver, also I B S, so I have to be careful what I eat. I believe in Chinese medicine.
cheryl33619 Guest
Posted