Recently diagnosed with Litchen Sclerosus

[twisterziggy]

I held off from having a circumcision for 2 years but now know I developed LS because of Phimosis. A sample of my foreskin was sent off to the lab during my circumcision and it came back positive with extensive LS.

I had the op last month and everything seemed ok but things have taken a turn in week 5 as my glands and shaft become bright red and burn after exercise and now during rest too.I have a high pain threshold but I'm not sure this is going to be sustainable going forward.

Just one or two white dots but no white patches yet.

It seems to flare up after exercise, Ive always loved to keep fit and now this condition is even stopping me going for a brisk long distance walk as the friction and sweat flares it all up,

As you can imagine this has had a negative impact on sexual function too. Erections have weakened and im not even feeling horny because its replaced with pain instead. Bare in my mind ive not done anything sexual for 6 weeks because of the op and I still don't feel anything but burning pain. My penis is constantly in a flaccid state, nothing is happening.

I'm 40 so this has turned my life upside down.

I saw my consultant surgeon just before the flare up and he suggested e45 cream or epaderm to start. A 111 doctor prescribed Hydrocortisone 1% / Clotrimazole 1% cream when the symptoms were unbearable yesterday.

I've not applied anything yet as i would like to speak to a dermatologist first but my appointment is in Feb….

Taking pain killers will just paper over the cracks

What should I do? Go private? Go to a gum clinic?

I was under the assumption that a circumcision would help clear up LS, not cure it but improve it. The short phase after is vital to treat so the disease doesn't settle in again and possible spread to the urethra .

Any advice?

[Orangeclub]

I would try and see a private derm straight away, preferably one who is well versed in LS. (Google will show the way / one is in London.)

You are still in the healing process, so perhaps take it easy in regards to exercise for a bit. Try a salt bath. If the pain is constant, maybe a trip to the gp to ensure it’s not an infection?

[twisterziggy in reply to Orangeclub]

Hi thanks for reply.

Which private LS dermatologist can you see in London?

Nothing is popping up for me when i search.

[MrMan84]

hi! I’m sorry you’re having this experience. I agree with the previous post.

I had a circumcision 2 years ago for LS and it was very sensitive initially and I had some early worries that LS hadn’t gone away, but so far it has been curative in any sense that matters. The skin continued to change for about 6 months so if it’s just sore, then that’s not necessarily unusual after 5 weeks

However, if you are seeing new signs of LS as opposed to existing signs that havnt yet gone away, then I would also try to see a derm now… even if only for peace of mind

Again, to agree with the previous post- see someone who knows LS.

Wish you the very best.

[twisterziggy in reply to MrMan84]

Thanks for reply.

I didn't even know i had it for 2 years. I never had the white dots or any itching on the outside of my phimosis foreskin. It was mainly a burning/pain inside, the main thing was it was affecting my dysfunction in a big way and i kept getting UTIs.

I don't know whether the circumcision cut where the glands get covered by the shaft skin in a flaccid state or the LS is causing this.

I'm experiencing it for the first time this week. It’s a constant burning pain, looks inflamed all over and when i woke up it felt itchy. Now back to being sore.

[MrMan84]

I saw lots of people who failed to diagnose it correctly and then I saw professor Chris bunker in London.

He is exceptional and a global expert in LS. I don’t know what it costs or if you’re insured, but I was extremely glad I saw him.

[twisterziggy]

Update… It’s now starting to itch after the initial burning phase.

Not enough to scratch it but bothersome nonetheless.

3 different GPs have told me to apply the steroid cream but ive made the probable stupid mistake to wait and see if it gets better on it’s own .

[MclarenP1]

How are you doing now? I thought LS was curable in upto 75 percent of circumcision. I think you are supposed to use creams after, im not sure. I hope it gose away

[twisterziggy]

Thanks for asking.

Well over 2 weeks later its still a mixed bag.

I applied the steroid once to the corona and bottom of the glands where its still not really healed, the scar line and also the bottom ridge part of the actual glands.

I got a sudden intense hot feeling which just felt wrong after applying the steroid cream so not used it again.

Have occasionally applied epederm cream which seems to help. Still waiting on the genital skin expert,

I think i wore the wrong type underwear after the initial period after procedure. It perhaps irritated the scar line and now wear tighter underwear instead with no loose hole at front.

Im worried about the risks now as in irritation of the glands or permanent sensitivity at the incision site if this does not heal.

Excersise defo makes things worst which is very frustrating as i cant think of any type of exercise other than weights which doesnt involve the movement of the penis!??

Im officiall at 8 weeks now