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
Hi there,
I have a lot of fusing and the hood extends beyond th urethra, it makes
Seeing messy, as it becomes multi directional! No blockage though.
So don't worry and I believe that you can use a emulator to stretch the
hood if necessary.
Ann
Sorry seeing was meant to read weeing!
My positive experience is: Start with baking soda and borax baths and rinses. See the topic on this forum: An Experiment with Borax. May be very helpful.
Hi, had a biopsy today the gyno suspects it is lichen sclerosis, I asked her about borox and carbonate soda putting it in the bath, and she looked horrified, she said long term it would cause alot more problems. No it won't stop you weeing, have you had a biopsy to diagnose your LS.
Your doctor is ill informed - that is - the pharmaceutical industry can't make any money from baking soda and/or borax. It can not be patented.
Some doctors acknowledge that there's 'healing' in the above mentioned. Years ago both baking soda and borax were used in hospitals.
Did your doctor prescribe medication yet? LS can be controlled. Keep reading up and don't be distressed. You've got company and you'll be okay if you try to find what works for you. My belief is that the steroid treatment is the best first step and constant moisturizer.
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.
Hi, it was a consultant at the hospital I spoke to about borax, I understand what you're saying it was used in hospitals years ago, what was the reason they stopped using it in hospitals. I think people should read about borax before using it, then its up to them to decide. The gynecologist was very well informed about LS.
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.
Amazing the difference between medics.... My dermatologist thought Borax was a brilliant idea and said its a shame she can't prescribe it here, because it is widely used in her country. ( lithuania).
x
Hi, I have spoken to several professional people about this, and not one of them anything good about borax, its not that expensive to buy , its a detergent, have you typed on the net why isn't it perscribed in this country, and should you put it on your genital areas, it will tell you why. Long term it actually thins your skin at a faster pace.
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.
I will repeat my story: I was totally fused up, while only using clobetasol. Sure, it stopped the itching, but didn't do anything against more fusing and white patches. I ended up in the hospital for a dilation procedure. No longer able to wee, the small pin hole left was stretched (that's not the urethra) so I could pass urine again. Because I was afraid of all becoming infected, I started to rinse with warm water in which I dissolved some baking soda (old remedy) and discovered that gradually the fusing let go and the white patches disappeared.
My gyno says: Keep doing what you're doing. All looks very good.
Forgot to mention - globetasol thins the skin.
Borax is a mineral. Baking soda is made of ashes. The use of both is age old. Both these items have made that my LS is nicely under control till now. A result I cannot describe to clobetasol. Clobetasol was working against the itching, but never did anything to make the fusing go away or the white patches disappear. Plus clobetasol was also working against the well functioning of my adrenal glands.
I can not argue with the medical professionals. Just lucky I have doctors who work with me at this point.
Being in your 60s is certainly not old and yours is a strong experience. I was told, however, that being left unable to wee is unusual and I wanted to give the original poster some reassurances about that, as she is so worried right now. Best wishes.
No, I haven't looked on the net to find out why its not prescribed. Would you care to enlighten me?
I tried the steroid ointment for quite a while and was no better, then i tried Borax and i have had no splits or tears since last Autumn, when i started it.
xx
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.
Was your dilation procedure for the opening of the vagina or the urethra? I had difficulty urinating before any LS diagnosis and a urologist did a urethral dilation and no further problem with that . Now I wonder if it was associated with LS.