Stem cell treatment

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Hi Everyone,

Hope you're all coping with your symptoms and not suffering too much. I haven't posted on here for a long while but felt someone may be able to help. 

I was diagnosed with LS about 4 years  ago (think I've had it mildly for longer than 4 years).  I currently use steroid cream as and when needed (feels like it's needed more and more), and I have read many self help stories of emu oil, coconut oil and bicarbonate of soda baths none of which have really worked for me.  I therefore have two questions to ask.

Before I was diagnosed with LS I was taking 20mg of fluoxetine daily, which I had been taking for 6-8 years. I decided I no longer needed to take it, so went ahead and weaned myself off (under my GPS advise and instructions). Unfortunately  once I came off fluoxetine my LS flared up and the diagnosis was made (could be completely co-incidentle - I don't know). So I wondered is there anyone on here who takes anti-depresents purely to help with their LS.  

Also, I am due to start stem cell treatment in October at the Royal Free Hospital, and I was wondering if anyone has experienced this treatment and can offer any info, e.g.. was if effective, if so how long was it effective for, is/was it very painful, how many session did you have etc.

I hope it's ok to pose these questions, and any info would be gratefully appreciated. 

Thanks Jackie 

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  • Posted

    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.  

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  • Posted

    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!!

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  • Posted

    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. 

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  • Posted

    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

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    • Posted

      Jackie, no need to apologize fore being from England.  I had a friend there, we played Words with Friends until he passed away from cancer last fall.  We never met but we did exchange post cards quite often.  I miss him.

      I am happy you have been approved for stem cell treatment.  I will pray it helps you.  God Bless You!

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  • Posted

    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.

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    • Posted

      Hi domino

      Im also from uK. You can buy borax on amazon. Ihave had LS for 4 years. Im 57. I use clob. Diet no gluten. Sugar. Dairy. Do drink but not to much. I use bakinng soda baths and now borax. Borax has helped with the inflammation so give it a try. About a cup full in a bath

      Hope it helps

      Kay from manchester. X

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  • Posted

    Hi  jackie770271,

    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.

     

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  • Posted

    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 🤷???  

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  • Posted

    Hi everyone 

    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. 

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    • Posted

      Best of luck with your progress Jackie770271, I am excited for you! It was a great success for me so I'm hoping you will be the same! Rest up and let us know how you get on in a couple of weeks!  

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    • Posted

      Thank you have been resting was very surprised at the bruising I had, but I’m sure it will be worth it. Hope you don’t mind me asking, but hi w long before you noticed any difference, also  how many treatments did you have and how long ago was it. X
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    • Posted

      Hi. No it was with Professor Butler. Well had my follow up apt in January. Some improvement but results weren’t as good as expected. Although I do feel there has been some more improvement since that apt. I have been put back on the waiting list to go back in for a second op. So fingers crossed that one works better.  Hope you’re still doing well after your treatment. 
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