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Hi everyone... I'm Aaron, I'm 24 years old and back in january 2018, i was partly diagnosed with Lichen Sclerosus, more specific Lichen Sclerosus et Atroficus / Balanitis Xerotica Obliterans - Reason I say partly is because the skin biopsy done on my foreskin never came back positive, but only with the label: Unspecific Reactive Change. I have white/greyish spots on my glans, and my foreskin is filled with plagues / white lesions, My frenulum have been attacked too, causing it to be tight and I have frenulum breve regularly. I was initially put on Dermovate / Clobetsol Propionate 0.5% and it seems to help, although it's only thinning the skin, however when i was forced to stop, my disease have spred even further, more plaques on the foreskin and even white spots below my foreskin on the inner shaft below the glans
So as i thought it was some sort of candida, I called my doc and told em i was gonna do that, and they basically just said go for it... (Getting an appointment here is a nightmare and I am in no way patient) - The most worrying part is probably that not many doctors know of this condition, there's only a few specialists and they ain't in my country.
Anyway back to the Canesten tryout it only seemed to make the plague amount worse, so I've stopped it and went back to the Dermovate 0.5% that I atleast have little effect with. I've also tried Protopic on my frenulum breve, which actually helped healing, but I am pretty determined in having my frenulum removed, Frenulectomy because it's always swollen, painful and in general too damaged. What worries me is that my doctor says that my LS is a mild case, however I like asking more doctors and another have said, He's never seen a case like mine before, which worries me a bit. Normally the plagues/lesions should only appear on the glans or foreskin. But mine also appear on the inside shaft skin, and that's worrying. After my biopsy i had a small cut that didn't fully heal, i don't know what it is with me but scars are always sore on me. I've thought about circumcision and I'm 99% sure I'm gonna go through it, however most surgeons only do the low and tight while i need a high and tight circumcision due to my LS plagues further up the shaft.
Now my Meatus is heavily swollen, when i pee, i pee in 2 different directions (2 stripes) sometimes. The doctors here could have done sooooo many basic tests, however they just don't want... Though living in one of the best welfare countries on the globe, paying extremely high taxes, I still have to finance my LS treatment myself, cuz all i get when visiting clinics are old docs that don't care and just prescribe steroid creams to LS sufferers all day long, like what about a cystoscopy? (Long silicone like gummy tube with camera inserted through your urethra, to see if it's narrow)
Cuz as we all know, LS can affect the urethra in men, which is a much more complex 2 stagenoperation with your penis getting sliced head to toe, and you getting your urethra rebuild with skin grafts from your mouth. My biggest issue is that... NOBODY cares...
This is a low key illness, nobody knows about it, it's auto-immune and no one can figure out anything, yet they still swear that cancer is the worst. Am not going to say cancer is not bad, no no am just saying, atleast it can be treated and atleast you know your enemy. LS tends to re-make itself in a different version, and you becoming immune to certain drugs and having to find new remedies/solutions.
I am aware of the fact that this mostly hit women, I feel with all of you. But atleast you have eachother, as a male i feel so alone, if not for my extreme confidence in life in general, and my slightly arrogant way to approach things, I think i'd jumped of a cliff long ago.
I'm a member of the official Lichen Sclerosus Care in my country, there's 3 male members, including me. And when you add the fact that most men don't wanna debate such with eachother it's pretty tough to even get somewhere.
Fast forward I have researched Stem Cell Theraphy, so i contacted different docs that do that in US.
One says that in order for my LS to cure we need to use my foreskin as some sort of collector, cuz you can only heal skin, with sound skin, diseased skin doesn't heal.
Another says, I can only get referred to him when I am circumcised, In general most doctor seem to advise circumcision.
My only worry is that my scar from the biopsy didn't heal well and is sore, just a small cut...
I'm worried my circumcision scar line will be whack, this one stem cell doc, says i can only get circumsised after my LS is cured with stem cell theraphy.
and a circumcision now will not heal well, and leave my cut with open edges.
I'm just confused, when the supposed to be experts in the field can't even agree on the color Red, it makes it hard.
I just wanna have my life back, that's all.
I hope some of you males wanna respond me and share your experience, if some of you have managed to cure it partly, that would be a huge boost for me. I'd also like to hear from uncut males who got circumcised due to LS, my foreskin is getting tighter and i can't retract it all the way down, due to the hard ring who's pressuring in and tightening around my shaft, plus the plagues hardening my frenulum.
So, if anyone have had a circumcision due to this or a frenulectomy aswell, kindly let me hear from you.
I need my life back, doctors don't care, we're our own doctors now.
All the best to all of you strong people out there suffering from this and god bless you!
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