How I cured Lichen Sclerosus on my penis - How long it took and what I used.. There is HOPE!

First, I never believed I would be able to write this 18 months ago. I really feel for you if you're reading this at the beginning of this s****y journey... I was in your position, reading this forum. Piecing together bits of information, slowly building a picture of what the hell LS is! I said I would come back, if I ever managed to get a grip on this and give everyone else hope, because its a really horrible place to be in. There is hope! Please don't let this consume and ruin your life. You will be able to get through this, but it's going to take some time.

My early experience with Lichen Sclerosus was typically confusing, mixed with a bit of good and bad luck.

Lead up to diagnosis -

My original symptom was a small white patch on my foreskin. Un-noticeable to most people and not something the NHS (UK health service) would look much into. After a couple of weeks, it hadnt changed and I managed to put it to the back of my mind. I then noticed some milky white patches on my glans. This was terrifying. They were not on the surface which isn't typical for LS but at this stage not painful. As many have discovered, GPs and even sexual health clinicians have very little knowledge of LS and basically told me to stop worrying 'Its nothing'. This is a horrible period as you know something is wrong but everyone who has the knowledge and the key to further testing is pushing back. Now it feels like you're in a battle, as well as having the condition, as well as getting on with your day to day...

I was very fortunate that I had high level private health care (I would recommend anyone suspecting they have this to take out private health cover straight away.). This wasn't the silver bullet. I drove all over seeing different dermatologists, spending hours searching for specialists who might have knowledge in this area. After many appointments spanning months, I ended up with a dermatologist who specified in male genital dermatology and LS. By this time I have more pale patches coming and going on my glans and it was painful and itching a lot. It looked almost dead, like the life had been sucked out of it. I was losing my mind! He took one look at it and confirmed LS. A combination of despair... 'I have a chronic condition on my dick'.. X ..'I know what this is now and someone who can help me'.

Beginning treatment -

The consultant had diagnosed me with a mild to moderate case of LS with non-typical presentation. At the time I had tried a few of the lower strength steroid creams so I was onto Dermovate under his care under the standard 3 month twice a day prescription. I had hope.

I had also been applying various moisturisers and barrier creams as well as keeping urine away from that part of the skin. My life basically revolved around this regime. I was checking it all the time, it was a nightmare.

It didn't work, in fact it kind of got a bit worse. I went back to the consultant after three months and he recommended circumcision. I was absolutely gutted! I read loads of bad things about doing this as an adult, as well as just not wanting that to be the case. I refused to accept that I was at this stage and gave myself another 6 months to try and figure it out.

**Experimenting - **

My first thought was... I want to put this into remission. That was the only way that I understood this could work. What the steroid cream was supposed to do. I felt that if circumcision would do that... How could I achieve this without the permanence of the operation. Then I read about autocircumcision which is the process of pulling back and keeping you foreskin in the retracted position. I felt if I could do this for long enough, I might be able to have the same impact as permanent circumcision.

I tried it one evening when the pain was quite bad and after a few hours I felt an improvement. It was the only thing that had ever had any effect. I knew I was onto something at this point and again, I had some hope.

I carried on doing this as much of the day and night as a possibly could. Whilst still applying Dermovate but only once a day. I changed all my shower gel and shampoo to 'Simple' which does what it says on the tin and stopped applying anothing else. I did want to keep it as simple as possible. Not barrier cream, no moisturiser, just making sure (religously) that no urine gets on that area, and keeping my forskin pulled back.

It was actually the opposite of moisturising, I was drying the area out pretty much which was the beginning of my recovery.

Another pretty far out method i used

I mentioned earlier, my glans looked kind of dead. Keeping it exposed and out of contact with anything pretty much apart from a very thin layer of dermovate in the morning was working but I wasn't using it. I'd never had a problem in this area but I decided to get some viagra and breathe some life into it. It worked for days after the blood was flowing in at a slightly raised level and kept everything feeling more normal.

I mentioned to my consultant and he said there could be a benefit of increased vascularity.

I didn't care what the science was... it was working.. The periods of pain and discomfort were becoming fewer and farther between. The white patches under the skin (scarring from inflammation) were fading and I was feeling more and more like myself.

Where I am now

I did have a flare up a few weeks ago, but it had been months since id felt anything before that so just by having that sensation reminded me how long it had been since id felt that at all, let alone every day. I applied the dermovate once and it went over night.

I still keep up with keeping urine away from that area, and I think Id got a bit sloppy on that which is why it came back, but I dont have my autocircumcise much at all anymore and have pretty much put it behind me.

I have left a load of detail out of this and Im fully aware, lots of people had it much worse than I did, and may not be so lucky. I just wanted to share my experience as it feels like the only way we can help improve knowledge on this fairly unknown condition is by sharing personal experience. It may trigger a new train of thought.

I hadn't read anywhere about autocircumcision or the vascular aspect of it so it may help one or two people.

I'll happily fill in any of the gaps or answer any questions if anyone has any.

Really hope it helps someone.

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