Questions about Stem Cell/ Platelet-Rich Plasma/Photodynamic Therapy.
Posted , 15 users are following.
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- 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 and it instantly returned. The doctors were extremely awkward with me from then on and never really listened to me- it seemed a real fight where they always knew best. 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 (sensation was reduced from the altered skin already) and eventually this caused me impotence at the age of 19. 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. Tacrolimus did nothing but I managed to calm it down to an extent, getting rid of blisters using manuka honey, but it didn’t stop pain or swelling so I looked into essential oils. A lot of them calmed the skin but their anti-inflammatory effects didn’t take away the swelling until I looked at inhibiting cox-2. Mixing with Jojoba oil I found that 6 oils inhibited it and reduced swelling and symptoms dramatically, even bringing back sensation to an extent. I became sensitised to 5 of them, meaning I am now only holding on due to Frankincense oil, which I worry I could become sensitised to. I would not still be living if it was not for this. Yet I am not cured, I have little sensation and some pain and the skin is changed and thin. Therefore I cannot have sex and I am extremely self-destructive. I have always been about 5 steps ahead of doctors and had to fight for treatment, it is so under control in appearance due to the Frankincense that some doctors deny I have anything and say it is in my head, but I fought until I was sent to the doctor regarded as the expert dermatologist in the UK who said he could clearly see I had a problem. However he seemingly dismissed all this progress I have made and said I could either use Eumovate or have a circumcision. Now 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 may have to use those antibiotics at some point in the future which would put me back here but with no foreskin. I have recently talked to a 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?
5 likes, 45 replies
Morrell1951 liam80440
Posted
alexvazquez liam80440
Posted
I also bought perrins cream.
Read about some patients with LS (men) that the cream is a miracle. Just in case you didnt know about it, it could be not true or yes but I asked my doctor on using it and he said that using it wont harm me so I will try it.
Let me know how is your progress.
amanda43686 liam80440
Posted
I have just been diagnosed. I know you posted this a while ago but am very interested in prp and stem cell therapy. Did you give it a go if so how has it been?
geoff2411 liam80440
Posted
Hi,
This thread seems a little old but I would like to revive it. Male just diagnosed with LS. Diagosis by UK expert tho' I also see no plaques, blotchy marks, red spots. I do have pale underside of foreskin - very uniform, which has become sensitive. Opening to urethra is irritated with some small lesions/redness. Just started dermovate steroid. Also using Perrins creme in between and barrier cremes,
I have lots of uncertainty about the cause of this (seemed to me to come from using a GP prescribed steroid for a mild rash that came and went). Anyway what is, is. So have to be pragmatic. Will the steroids work? Not sure. We seem between a rock and a hard place with this LS. Not had biop and kind of want some actual confirmation.
Also told circumcision is option but I am totally against this for cosmetic and sensitivity reasons. Plus the changed pigmentation I have may make me look odd. At the moment I look kinda normal as foreskin underside is not normally visible.
Anyway - I am wondering about the PRP option as it sounds like it could calm, reduce lesions and regenerate tissue. So where are we with this treatment? I have read the papers and I know there is an italian doctor who does this. Maybe some pioneering dr's in uk.
Please update with any more info, thoughts, good news stories.
Sensing you all my sincere wishes and thoughts, This is one of the hardest challenges I have faced in my life (the thought of not having a future relationship makes me so sad). I beat cancer some years back but this seems at least as hard. I've been through a divorce and was hoping to date again when all this came about.
Please contribute.
G.
--
alexvazquez geoff2411
Posted
Im also a male (40) with LS, diagnosed before and after biopsy. So no one knows exactly how you get this. Still a mistery. What I can tell you is that Perris Creme didn't work for me. I first started to see like redness in some parts of the shaft small ones and then I tought i was fungus but the treatment for that didnt work then doctor said it could be LS, they did a small biopsy of skin and they confirm that. After confirmation the Urologyst prescribed me with Elomet cream (steroid) only for 8 days applying a very small amount only on the red spots, also this red spots became very sensitive and itchy some times, also with only the movement of the underware I felt like pain. Then I applied Elomet cream for only 8 days, after day 5 of applying I could see that the red areas or zones started to became small and small every day until you cant see anything wrong. Doctor said not to apply anything else and that also steroid creams sometime can make the LS to be more active and appear more aggrevise.
After almost 8 months of having perfect skin as always, again one day I saw a small very small red spot between shaft and penis head (btw Im circunsided) and again I get worried about it, I let it go and see if it dissapear next day or later but same efffect, it start getting little bigger and starft appearing in other parts, normally as small red areas but exactly same appearance as first time. Then, without going to the doctor I applied Elomet cream for 8 days, this time I only applied once a day (night) a very small amount only on the affected area. And same result, after 6 days I could see the spots dissapearing and on day 10 i was perfect again.
And the story continues, after again 6 months of being perfect, the LS appear again, now a small red spot in penis head and also some bigger spots in shaft. This time I went to see a Dematologys and she prescribed me Dermatovate and she said apply for 30 days and after that apply once a day Trocalimus (topic oniment), Trocalimus is a cream also that doesnt have steroid., Then I start applying Dermatovate only at night but I didnt follow her instructions about applying for 30 days, I only applied for about 12 and I LS dissapear, then I tried to apply just once Trocalimus but it was horrible, you feel like burning on the skin even hot water in shower gives you so pain so I stop using it and also because I was reading on internet that Trocalimus can generate skin cancer. The Dermatologyst told me that yes there are some stories about that but nothing confirmed by FDA, so she said is totally safe. But I preffer to be away from that.
Today im almost 4 months after I saw LS appear last time and im perfect. But yes your sex life can be affected, im married but because of the fear you block your self and you stop having sex often. If you have a nice wife she will understand and you wont have any pressure on that.
Im aware that this is something with no cure, have thinking about getting stemcell treatment in California or PRP in Italy with Dr. Casabona but today Im fine and I dont see anything wrong with my skin. Maybe next time I think about it but for example in California they have only did 3 treatment of stem cells to men, and without having great results. Dr. Casabona told me that his treatment is better having amazing results but you never know until you try. Everybody is different,
Just dont be panic, and the most important thing is to accept your condition and be aware that yes it could be bad some day and you have to be prepared. Everything is about mind. Is not easy but also if as a man you only think that having a pefect functional penis is the only way to live a life then you still a "animal". There are tons of things to do with your life without just thinking about sex. Evolution is the way to succed.
Its my personal recomendation and dont get in panic....