Platelet Rich Plasma procedure (PRP)

I have a feeling it is very expensive and not covered by insurance but will keep my options open...I am just starting this mess so I am all over the place on what to do. 

Hi Tweetmepete!

Sorry can’t offer any advice re this but would be very interested in any info you can find out. Where in the world are you?

hi guys, from what I can find online it's around $2,500 and around £1000 if you get it done in the UK. I realise this is crazy expensive but at this stage after fighting this horrible disease for 2 years I would re-mortage the house to pay for anything that could cure me. I have already spent easily that much if not more on steroids, doctors, dermatologists..... the list goes on and on and on. 

They basically take your blood and put it through a centrifuge to separate the plasma and they then inject this straight into your problem areas, I think it's around 6 injects in total. This rejuvenates the skin in that area like nothing else according to the reports and heals LS in the process. There is no recovery time at all. It wasn't designed to cure LS but for men with erectile issues but curing LS was one of the side affects in a lot of people. I need to read a lot more about it but there is P-Shot for men and O-Shot for women from my limited reading.

This could be complete marketing now and be a cash cow for the rich but I felt it was worth looking into it more.

I'm based in Ireland by the way Claire.

Luv your attitude! I think having a positive attitude can really help. 

Ok i will try and research it - I did awhile back and didn't get very far tbh. I'll give it another go.

Actually I'm going to write to the specialist doctor I saw at the Royal Free Hospital in London that I saw and see whether she has any recommendations. 

Will let you know how I get on!

x

Keep us all posted please...

Hello everyone.

Ok at the risk of being inundated with replies, I'd like to give you a brief outline of the success of this treatment in my own personal experience.

I am in my late fifties, in the UK.

I was diagnosed in 2012, but believe I had LS for some years prior to that.  I don't think it was a severe case, but severe enough to completely end the possibility of penetrative sex with my husband, and cause a lot of pain and discomfort on a day to day basis. Constant itching night and day, the feeling of cystitis and very sore. Some atrophy and a little fusion with some white patches - but compared to a lot of people I think I got off comparatively lightly. Although I can't say it wasn't serious - it was awful to live with and try to function normally.

Anyway, to cut a long story short if I can, I had the usual gynae visits, steroid cream etc. but alongside that I was constantly researching and came across the name Dr Casabona from Genoa.  His name and treatment/results kept cropping up.  I managed to contact two people who had undergone the treatment with very good results.

So in Sept 2014 I went to Genoa and had the procedure.  It was scary - neither myself of husband speak a word of Italian but we managed somehow to go to the four locations - one to consult with Dr C, one for blood to be taken, one where the procedure was done (small hospital) and a final place ( different hospital) the next day to check all was OK.

I had blood taken and also a small amount of fat taken from my tum (kind of wish it could have been more lol) to be injected to puff out the area a bit, along with my blood plasma.  We flew home as soon as he'd checked me.

I didn't feel a thing under sedation (not general anaesthetic), but when it wore off I won't lie - it wasn't pleasant.  Really really sore and painful for about ten days, and then intense itching which lasted for about six weeks - drove me a bit crazy but I guess it was all part of it.

The procedure cost about £1800 - 2000 plus flights/accommodation. It is known as regenerative therapy with adipose derived stem cells and PRP.

We were able to have a decent sex life for about a year afterwards, but then it started to hurt again.  I think this wasn't so much the LS coming back, but the tightness and under-use had caused me to shrink and shorten so much.

OK so the good news is, despite his scepticism, my gynae has now admitted that the LS has 95+% disappeared. I no longer get the awful itching or pain and my 'bits' look much healthier. I only use coconut oil now to keep myself comfy, but I think that is just as much to do with menopausal dryness as anything.

I have now started a course of women's health physio, which involves intrusive manual manipulation to soften the internal tissues to enable me to have sex again - I am hopeful this will help.

I would say the only issue is that Dr Casabona has never published his research/results -  a real shame because I know the procedure worked for me and many, many other patients.  But I am incredibly happy I took the chance and went ahead. I know they are starting to offer the procedure in the UK, but not sure in what format and how successful it is here.

I hope this helps - I know lots of you will have questions - but please go easy on me!

Hello, I had this done a couple of years ago by a naturopath here in Oregon.  She was sort of still perfecting her technique and using my case to present at a conference, so I only paid $300.  My understanding from others on this site is that some have had good luck with it.  But there are studies being done and it is not widely accepted at this point and there are no long term studies yet.  In my case, I was supposed to get 2 treatments but I ended up with a raging infection and cellulitis in my entire area from my pubic bone area to my perineal area.  It required antibiotics and took a while to clear up.  I also metabolized the numbing cream very quickly, so I felt the needles.  It was awkward and I kept asking myself why I was doing it and not totally clear if it was safe.  That said, my LS has been holding out ok.  I had some scarring progression over my clitoris but it seems like since I started taking some supplements like D3 recently that some of that has receded.  I think the PRP probably helped in general, but I’m disappointed that the naturopath who did the treatment decided that I probably had some innate bacterial presence and did not want to proceed with the second treatment or even check to follow up with me to see how I did later.  I also had a testosterone/estrogen pellet injected in my butt that lasted for about 4 months and I felt that my LS did well during that time.  I’m in Oregon in the USA and we have a lot of Naturopaths here that are willing to try various things.  

Hi all,

So I emailed Dr SW Clinic in Harley Street London in regards to the P-Shot or O-Shot for women and she emailed back. There were a lot of links which I have removed as the post would more than likely not get approved. I presume I can send these in private messages? If you want to see these anyway, please PM me and I will include the full reply there.

The clinic also rang me and told me that they have had a lot of success in treating LS and are in the middle of writing up a report on the whole thing but it's not ready to be published just yet. They said that most people come back after a year or so for a top up as their symptoms slowly start to come back around then but that some people never come back. They made it sound as if they don't come back because they are cured, but I feel a lot of people don't come back because of the high expense but also maybe some of them went into remission as a result.

I haven't ruled out the p-shot but I have moved it further down my list of things to try. Something I am very excited about however and I will probably create a new post on it is functional medicine. I have an appointment with a functional doctor now next week and I will share all after

Hi Tweetmepete,

Yes, I'm definitely considering getting PRP treatment in the coming months. I have a follow-up at my local vulva clinic where I will quiz my doctor about her knowledge of PRP to get a more impartial opinion. I feel if I write to the doctor who I'd choose to perform the procedure, she may be more inclined to give a rosy picture of the expected outcomes. I have a very long list of questions to ask before I would cough up £1200 for a private medical procedure not available on the NHS (I'd love to know why). I'm also going to consult my GP just to get her opinion as well. She diagnosed me within weeks of my LS starting and she said she has a few LS patients besides me, so I'm hoping she can give me her insight too.

I personally think it's worth trying. It is a lot of money, but my LS has advanced rapidly since diagnosis and the Clob isn't really doing anything besides controlling the itch. I'm most concerned to tackle my atrophy. I'm hoping PRP can help with that.

PRP has also been around for a while and it's my understanding that it is useful for sports injuries. I've read numerous promising research papers and studies about it with regards to LS, so I'm hopeful. I think LS is one of those diseases where we have to stay positive and optimistic! PRP helps me stay positive.

What would encourage you to go for it?