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

Posted , 15 users are following.

liam80440
liam80440

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

45 Replies

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  • kathy46259
    kathy46259 liam80440

    Posted

    All of us care.  However all of us will tell you that there does not seem to be Any type of cure, just containment at best.  No one seems to know where it comes from, if a doctor actuall diagnosed a reason it would sound strange to all of us. The steroid cream should be explained by the doctor, which it is not.  I have never heard of a doctor telling any of us the side effects.  It will thin out the epidermus everywhere it touches, only use it in very sml. amounts, do nout rub it in, just pat it on let it sort of penetrate on its own.  For us ladies the possibilities of it spreding to all of our sensitive spots is dreadful.  ASK if you really need the antibiotic next time someone recommends it.  Most of the time it is useless against our complaints of other isssues.

    The doctors are awkward because there is no answer they can offer us.  Go careful with the steriod cream, just a touch.  

    • liam80440
      liam80440 kathy46259

      Posted

      Unfortunately the antibiotic was a last resort and would be needed again, while regarding the steroid cream I simply cannot use it at all anymore. Considering that I have made considerable progress using cox-2 inhibitors which I have seen nothing about, I am still hopeful of curing this. There seems some promising treatments like the ones I have mentioned so I was wondering if anybody had any of these.
  • sheila49099
    sheila49099 liam80440

    Posted

    Hello Liam, I was under the impression that for men, there is only one cure and that is circumcision.  For women there is nothing.  You may want to reconsider that 

    option as it could be the end of your troubles. Before submitting to the other things you have mentioned, look for proof or some definite feedback from other sufferers.

    Wish you luck

  • ElleF
    ElleF liam80440

    Posted

    Liam, you say you are extremely self destructive. Are you speaking with someone about these thoughts and/or actions? 

     

  • suedm
    suedm liam80440

    Posted

    You probably have watched the Dr Goldstein webinar- mainly aimed at females i know - but the slides show what happens to the dermis and epidermis microscopically. If i were in your position whereby you have the conditon put down to pscyhosomatic effectivley i would write to Dr Goldsteins in the USA and ask what he considers would be  a sensible couse of action for you - a male sufferer. You cold privately message Alan (the moderator)who may be able to steer you in another direction in the UK, or you could ask to be given the avitars of the other men on this site who may be able to give the male support that  you may lack

    You dont say you current age

    One aspect that we all seem to share is that stress  will make matters far worse, so stress management may also help you- there is mindfulness training/ meditation that i understand is very helpful in coming to terms with various difficult situations

    Good luck and try to keep positive- and there will always be a "listening" ear on this site

    • liam80440
      liam80440 suedm

      Posted

      I am 20 and have suffered for 4 years meaning I cannot have a relationship, which is why I am self-destructive. I am no longer severely depressed but I cope by throwing myself into things I shouldn't. I am under control until something else in my life goes wrong and combined with this I struggle to cope. I am fine now however.

      My lichen sclerosus is not affected by stress or diet. Circumcision is not an option. I will quite possibly have to take these antibiotics again in the future which would put me in a worse place. Men who get circumcised for this also have different circumstances and symptoms to me. This is not me passing up a cure- it would simply be the wrong decision without looking into every other avenue.

      I have been in contact with two doctors in London who would perform prp but I would like to hear from somebody who has had it done. Or any other treatments iI have mentioned. I have seen in another thread about the Mona Lisa Touch as a cure. This is only for women but from its description I see no reason it would not work the same so I am interested in this too.

    • suedm
      suedm Emis_Moderator

      Posted

      Thank you Alan- I KNEW you would be helpful

      Is there a male LS thread ? - I remember seeing other chaps needing support on here a while back. - You are doing a splendid job  in keeping the input sensibly balanced

      Best Wishes Sue

    • suedm
      suedm liam80440

      Posted

      Liam do not fret about having a sexual relationship at the moment. I know that at that age I was only too relieved that the chaps I went out with were not  in a hurry to get me into bed!

      It is a sad reflection of today that sex before a trusting relationship develops seems to be the norm!

      Dont worry about not having a sexual partner at the moment - go for a GOOD friendshiip - find an activity that you really enjoy - and where you can meet both sexes with the same interests as you, let friendship and trust develop over time and then you can experience a delightful relationship with little or no pressure. Most intelligent women / girls would rather have a loving friend than a sexual partner I am sure -

      Good luck and I hope you  can find the information and relationship you seek

      Sue

       

    • Emis_Moderator
      Emis_Moderator suedm

      Posted

      Hi Sue/Liam,

      I don't know off the top of my head if there is a male LS thread but anyone can start one at any time and I can add it to the pinned discussion. I have updated that with a couple more sites and also this link

      http://lichensclerosus.org/men-only-2

      which is a male LS discussion on one of the sites linked to if any help.

      Regards,

      Alan

  • Cuppa_T
    Cuppa_T liam80440

    Posted

    Hi Liam

    So sorry to hear about your dilemma and all of us on this site can identity with your frustrations when it comes to some medical practitioners. However, do not give up, as you know your body best! I know there was somebody in S.Africa who had some stem cell operation done. This was about two months ago or so. We have not heard from her again since after the op, so perhaps she will read your post and respond, as I too would like to hear from her again and what her progress has been. She goes under the pseudo name of LeahRSA. Hope this helps somewhat. Take care and all the best.

  • sandra01720
    sandra01720 liam80440

    Posted

    So very sorry about your distress. I also am concerned about your reference to being self destructive. I'm not sure what you meant by that but I do hope you can find emotional and physical support soon. If I was an uncircumcised male I would certainly consider circumcision. Appardntly often successful in ending the LS in men.

    We absolutely care and hope you can find relief.

  • Guppy007
    Guppy007 liam80440

    Posted

    You have ruled out circumcision, and yet from what I have read that could really help you, and so I think thats a shame that you arent prepared to entertain that idea. 
    • liam80440
      liam80440 Guppy007

      Posted

      I have entertained that idea- I have beyond considered it. but people are missing the point. I will quite possibly ave to have those antibiotics again in the future as I have another illness that could flare up at any time. Therefore i will be back in the same place as I am now only with my last resort used up. Also the normal reasons for circumcision in men with this condition do not fit with me.
    • sheila49099
      sheila49099 liam80440

      Posted

      Oh Liam, we all feel for you but you are being evasive. Can you be more specific about your problem?  How can we help you if you won't tell us 

      what is wrong?

    • liam80440
      liam80440 kathy46259

      Posted

      I do not see how I am being evasive. The reason for the long post at the start was to explain why I needed alternate treatment to what the doctors have suggested thus far and saying how desperate I am, rather than a cry for help with regards to my mental health- I was just making clear it how it affected me.

      The main purpose of this post was tp try and find people that had tried the above treatments. I also thought it worth mentioning what I had used to get myself to a place where it does not destroy me in the same way- I am happy but I wanted to make clear the line I walk on the edge of, so I stopl need treating. A mixture of good quality frankincense oil and jojoba oil was literally life saving for me and I hope someone in a similar place would be pleased to hear about this treatment and I explained how it worked too.

      I struggle to see how I have been evasive or in denial.

    • ElleF
      ElleF liam80440

      Posted

      Liam, I don't think you are being evasive. The subject of your thread and your final question is quite clear what you would like to discuss. The rest is, as you say, background specific to your case. 

      I also can't begin to image the thought that at your age sex would have been cut off from me as an option. It's not easy at 51 to face the prospect of a very reduced sexual menu; I can't fathom the idea of no sex at all and at your age! My heart goes out to you.  

    • milliemoo1
      milliemoo1 kathy46259

      Posted

      He needs help - you should move on if you feel uncomfortable or don't post here!
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