Stem cell treatment

Hi Jackie!  You must be from Canada or England......just curious.   I would be interested to know, as I am sure others are,  how effective this treatment is for you.  I realize it is still a couple months until your treatment,  but please let us know.  I'm sorry I can't give you any advice.   I had mine for a couple of years now  and I use corticosteroids for my LS.  I use it once a week and at times I go without under pants.   That really helps quite a bit.  

Hi Jackie I know you said you tried the baking soda but did you try the borax? I started using it 8 days ago and my redness is gone, soreness inside is gone. I still have the burning on the outside some but washing with cerve at bath time is taming that to where it's not as bad anymore.

Please keep us posted about the stem cell treatment. Wishing you the best of luck!!

A while back there was a discussion on stem cell treatment for LS.  Perhaps you will still be able to find it.

?I'm very happy with baking soda and borax treatment myself.  Though it takes a bit of patience and diligence.  Have you read "An Experiment with Borax" already?  Perhaps worthwhile. 

Hi there

Yeah sorry I'm from UK. I can't use either dermovate or betnovate (are 3-4 couldn't even sit down they made me so much worse) I was eventually given Nerisone (another Steriod cream) earlier this year which I used and helped to calm things right down. In fact I didn't use anything for a few months, but for some unknown reason has flared up again and this time Nerisone doesn't seem to be helping 😩  

Whenever I tried bicarbonate of soda it's either made me worse or done nothing. I have lots of skin fusing, burning and pain going on at the moment, but I'm going to persevere with Nerisone and bicarbonate of soda in the bath for the next few weeks hoping it will calm everything down before I have to go in for the treatment I don't want them to say they can't do it because I'm too sore or imflamed. 

I was accepted for stem cell treatment in April and I'm now on waiting list my date was September but has been changed and is now mid October.  Very apprehensive but excited at the same time. 

Jackie x

Hi Jackie

Am from U.K. also.  Am intrigued to hear about the Stem Cell Treament.  Have been diagnosed with LS now for a couple of years but have now realised I've had it for many years without even knowing it.  Always thought the discolouration was due to Vitiligo as I have small patches elsewhere and know its incurable.  As a normally healthy person never go to docs apart from smears and it wasn't noticed. It was only recently when I went about what I thought was an infection that the doc said I perhaps should see a gynaecologist.  Was told to use demovate and hrt  pessaries and referred to a specialist who deals with cancer of the vulva.  Fortunately I don't have cancer.  However, despite the fact that she said it was important to keep an eye me as it was fusing the good old nhs has been cancelling appointments and I haven't seen her for over 18 months.  I was able to have intercourse up to last summer but it is impotent now.  Have joined this forum just recently and never heard of these other possibilities.  Borax is banned in the U.K. So will try the other to se if it helps unused.  Other than that have to see gyni in November who says even if I have an op they are not very successful.  We shall see.  There is absolutely no education in the U.K. regarding this condition.  I had only heard of it after watching Embarrassing Bodies.  Wish you well.

i had stemcell treatment in Genoa, Italy. It was hugely successful, it reversed some damage caused by LS to my Labia. The process consisted of me giving blood which was then centrifuged and the plasma was harvested and then injected back into my labia. I was given local anesthetic - firstly in gel form and then by injection. i was quite swollen for about 1 week then everything settled down. I was just diagnosed so my skin wasnt compromised by surgery. The results were amazing after one treatment. I would definitely recommend this treatment and sometimes i wonder why more people dont avail of it as its life changing to have it done.

Hi there. Since I quit eating sugar my symptoms have stopped.  Maybe that's the secret

Hi Irisheyes

So glad you had the stem cell treatment and it was a success. I have everything crossed that I am also successful. Unfortunately I have been told it is different for everyone some improving more than others but I am very hopeful and just glad to be given a chance really .

I have cut sugar out as much as possible do have the odd treat now and then and no longer drink wine (due to high sugar content). But I must say the difference wasn't that noticeable. I do eat heaps of fruit so perhaps the high sugar content in fruit could be the culprit 🤷???  

Last Wednesday I had my first stem cell treatment. It’s just a case of waiting now with fingers crossed that I have the fantastic results that other have had. 

From my conversation with my consultant I will need to have further treatment but won’t know for sure or when until I have had my follow up appointment in 7-8 weeks time. 

The surgery was fine, I have a lot of bruising to my stomach where they took the lipo-harvester for the stem cells but that’s a small price to pay hopefully for normality. 

Watch this space.