Questions about Stem Cell/ Platelet-Rich Plasma/Photodynamic Therapy.

Liam,

The trouble with such a detailed post is people will always scan. You were crystal clear when you wrote: "circumcision is bad for multiple reasons: I have stretched my foreskin so it retracts, it is the part with most sensation, and I may have to use those antibiotics at some point in the future which would put me back here but with no foreskin."

Just wanted everyone to note this point.

O.K.....I see that the moderators message is not private.  I am talking about Liam.  He is dominating this thread and we (as most good women and mothers) have tried to help him.  He is now onto Stem Cell research.  I will be leaving this area and find another group for further education about Women.

Sorry Liem, you are most inappropriate.

kathy

EDIT: Hi, I am a male with what has been diagnosed as Lichen Sclerosus. I am actually unsure that this is correct as I have no white plaques and have not had a biopsy for it. The skin condition was caused by taking flouroquinolones, a type of antibiotic, and it was initially diagnosed as thrush- presenting as redness and swelling, blisters and my skin completely changed in appearance, becoming wrinkled and dry. The effects of this meant that it would take me up to 20 minutes to urinate because of the swelling, I would be in constant pain and would be constantly reminded of my problem even walking down the street and it would often sting at night, keeping me up, while finally sensation was somewhat numbed. Any sexual contact would be much more painful than pleasurable.

After seven months of trying treatments I managed to get rid of this using Eumovate steroid cream. Unfortunately a few weeks later I had to take the same antibiotics- they are the last line of treatments for complicated urinary tract infections- it instantly returned. The doctors were extremely awkward with me from then on and never really listened to me- they seemed to disregard everything I said and just continued to prescribe steroid cream. I had steroid cream damage from taking them in different potencies for another year non-stop, despite me questioning this. The steroid cream actually atrophied my skin to the point that all the blood vessels underneath were raised and visible, they made me lose all feeling in the area it had been applied and eventually this caused me impotence at the age of 19, as without sensation (I literally could not feel an ice cube) this will happen.

At this stage I was severely depressed and very near ending it all. Fortunately with time the steroid damage has reduced somewhat and I am no longer impotent, but I have little feeling and still have pain from my condition. I am extremely positive and a usually happy person, I have managed to escape my depression for a year and do not expect to go back to that place as I have managed to get the symptoms under control (after trying every single thing I could find) using Frankincense essential oil. This is something that may be of help to people as I have not seen it mentioned. I mix it with Jojoba oil and apply it twice a day, which is the only thing to reduce the swelling and inflammation and when this happens sensation returns somewhat. Manuka Honey with a high UMF helped get rid of my blisters first it is worth noting. However this had not cured me, it is under control but I still need a cure, I cannot have sex (and by extension form a relationship from embarrassment) and I feel I overcompensate with some self-destructive behaviours.

I did look into many essential oils and go through them all and some calmed the skin and reversed the Red Skin Syndrome and various other problems the steroids caused to a large extent, along with time. However the ones that helped with Lichen Sclerosus specifically inhibited cox-2, a type of inflammation (the oils targeted separate enzymes causing inflammation and this is the one that worked properly). The six oils in this class, along with a few others, can cause a sensitivity reaction- basically dermatitis meaning I had to stop using them. The only one that still works and has done for a long time is Frankincense which is still diluted.

I tried many potencies of steroid, Tacrolimus and a lot of other things that had absolutely no effect until I found this product. After this however Doctors started denying I even had anything and saying it was in my head- if I do not use this oil for three days pain and swelling start again and blisters come after a week, this takes about two weeks to settle down and I was not prepared to go through this just so I could prove it to the doctors when there were, to me, some clear physical signs still. I have always been about 5 steps ahead of doctors so I had to keep fighting and managed to see a good dermatologist after some time who recognised it and sent me to the expert dermatologist in the UK, who diagnosed it as LS. He would only offer me steroid creams or circumcision however. These are invalid options. I certainly cannot use steroids as one treatment destroys my skin now, while circumcision is bad for multiple reasons: I have stretched my foreskin so it retracts, it is the part with most sensation, and I am actually likely to have to use those antibiotics at some point in the future which would put me back at square one but with no foreskin.

I have recently talked to a good doctor and she is writing to people regarding treatments I have asked her to enquire about, namely platelet-rich plasma therapy, stem cell therapy, laser therapy and photodynamic surgery. I was wondering if anybody has had these and if they had seen improvement? I also have seen the Mona Lisa Touch mentioned as something promising. Coincidentally my sister has had this since 2 years old and it is a lot more affected by stress and has white patches. I am willing to spend all my money on treatments and if I find one that works it would be beneficial for her too. I am 20 and have been suffering for 2 and a half years, with a further 7 months before that, so over 3 years in total. My sister is 17 and has had 15 years of this but hers is maybe less troublesome as it is not prominent when she is not stressed.

Thanks.