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Diagnosed with Lichen Schlerosus and now deciding whether to get circumcised or not...

3 months ago•21 Replies

I have been diagnosed with LS and have been recommended to have a circumcision.

I have been on steroid creams for about 9 months and when I tried to come off then I did have a flare up so am back on them now.

My symptoms are definitely on the lower end of the scale. When I have a flare up I get a tight red ring around the skin when it is pulled back, some small tears and soreness, but when it is under control everything seems to be relatively how it should be although my doctor says there is still inflammation there, despite it not impacting me at all.

Yesterday, the doctor advised me to have a circumcision as this will solve all of the problems and prevent future flare ups, I won't need to manage it via steroid and barrier creams and I can just get on with my life. However, I have read so much conflicting information online about the pros and cons of circumcision, I am petrified and it is really affecting me mentally. I can't focus, I am not sleeping properly and am highly emotional. I know its irreversible and I would need a high cut so I am really scared it would be too high and cause other problems, so I am wondering do I persevere with the creams as I am not sure I have been using them as liberally as I should have.

I am just wondering whether anyone here has been in my situation and what did they do and any advice? I completely appreciate that if one has balanitis or severe symptoms and circumcision is then maybe a more clear cut option, but I am really really torn and it is eating away at me so any advice would be so greatly appreciated. Thank you.

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Nervous123

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21 Replies

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Norwich1Moderator3 months ago

Here is the NHS guidance on LS: nhs.uk/conditions/lichen-sc...

Krfs3 months ago

The best thing you can do is agree to the surgery. At the time, I procrastinated for 4 years, but with my knowledge today, I wouldn't have waited even a minute. I have a moderately severe LSA disease, but since the operation, the symptoms have significantly eased.

Nervous123• in reply toKrfs3 months ago

Thank you, can you explain what it is that you know now that would have made you get it done sooner please? What did you try in the 4 years you was putting off the surgery?

Bburn3 months ago

Morning, so I'm now 3 months on from my circumcision and I can't tell you how happy I am that I had it done. The only way to prevent flare ups and any future issues is to have the circumcision, you won't regret it. I had lifelong phimosis, and 6 months before my circumcision I was getting alot of irritation and inflammation, I had suspected bxo and the only way to stop it progressing was to have the cut, since then I have had no irritation or inflammation. I just wish I had the circumcision years ago, honestly it's not that bad. There is so much support and people you can reach out to on this forum, it really helped me with understanding the healing process and what to expect. We're here for you.

Nervous123• in reply toBburn3 months ago

Thank you, that is really reassuring. I have a really good dermatologist who I trust and he has said if he was me he would get it done, but because I have no issues with pulling back the foreskin, apart from when I have a flare up and then I can still pull it back but its tight...the surgery feels less like a necessity than it would be if I could not pull it back at all. I think it does not help that I waited 18 months for a urology appointment, then they did a quick telephone call last week and now Im booked in for surgery next week without having had any discussion about the surgery, without being examined in person etc. Although the dermatologist has examined me in person numerous times, I have paid private for that and there is no communication between him and the urologist. I might be more confident in proceeding had I spoken with the urologist in person and it didn't feel so rushed and pressured.

Norwich1Moderator• in reply toBburn3 months ago

Where you diagnosed with LS or BXO?

Nervous123• in reply toNorwich13 months ago

I have been diagnosed with LS. The foreskin was tightening but I was still able to pull it back, although it was tight, I have a red ring of scar tissue around the foreskin when pulled back and I was getting micro tears in the foreskin. I used a strong steroid cream for 3 months and then was put onto a weaker one and it pretty much got the condition under control, massive improvements although there was still some inflammation/scar tissue. I then came off the steroid cream and was just using barrier cream. It then flared up quite quickly - tightening again, micro tears, so back on the steroid cream and its drastically reduced the symptoms again, to the point I wouldn't even know I have LS really. I completely understand there is no cure at all but I am torn between whether just having a circumcision to completely reduce symptoms, reduce risk of cancer, and not have to use creams constantly, or whether I'm ok with using creams and the symptoms are so low that it does not affect me and therefore not get circumcised. The thing I am worried about is am I just putting off the inevitable, and is is likely that the steroids will stop being effective after a period...am really interested to hear about other people's experiences.

Bburn• in reply toNorwich13 months ago

Hi there, I was never officially diagnosed with either actually. The Urologist said it could be the start of BXO when I went for my first consultation. They test they foreskin for actual diagnosis after the circumcision, the laboratory results I never received so it could be that I caught it early and never had bxo. I'll never know

Norwich1Moderator• in reply toBburn3 months ago

So you do not know what your circumcision healed?

Bburn• in reply toNorwich13 months ago

Circumcision all seems fully healed, I also had quite bad adhesions as well. Having the cut is brilliant, I never get any irritation or discomfort now.

Bburn• in reply toBburn3 months ago

My circumcision was because of inflammation and having lifelong phimosis and adhesions, due to this my foreskin had discoloured and they said they wanted to rule out anything pre cancerous.

Norwich1Moderator• in reply toBburn3 months ago

I believe the OP was enquiring about LS and you do not appear to have had it.

Bburn• in reply toNorwich13 months ago

He was also worried about having to have a circumcision, I've had that.

Norwich1Moderator• in reply toBburn3 months ago

In the light of LS?

abcdefghijk123 months ago

Hi - I had bad LS for which I use the steroid cream, this solved the issue for about a year before it came back again. The steroid cream then moderated the pain but it didn’t go away the next time. I tried using the cream over and over again in the hope it would solve it but it didn’t, so I was told to have a circumcision. I reluctantly agreed and was very nervous / anxious about it.

I had the operation a year ago. It was also a high cut I believe. In my opinion I am so pleased I had it done. It cured my LS. I saw the consultant a few times since (in fact just yesterday for a 1 year check up) and the LS hasn’t come back, which has really helped me move on with my life and stop worrying.

It took a little time to get used to the change in my penis after the surgery but now I actually like it.

You obviously have to decide what is best for you and how much LS is impacting your life. But hopefully that helps with my story. Let me know if you have anymore questions!

Nervous123• in reply toabcdefghijk123 months ago

Thank you, your reply is really helpful. Was you using the steroid cream whilst it came back or was it when you stopped using the cream it flared up again? I am worried that if I continue to use the steroid cream then it will stop being so effective for me. My dermatologist said some people use the steroid cream and it clears it up and then they just use it for a flare up, but still use barrier creams daily, and I would be ok with that...but despite being on steroid creams for 9 months it has not got rid of all of the inflammation although the inflammation is not noticeable to me at all...hence why this is such a difficult decision for me. It boils down to do I think the steroid cream will keep the symptoms at bay enough for me or is it fighting the inevitable and they will be less effective the more I use them and I will need a circumcision at some point, so why not just get it done now. I am just so scared of regretting my choices which is not made easier by the lack of consultation from the urologist.

Stones3313053 months ago

I had exactly the same at age 63….The steroid cream will not cure your problem….100% have the circumcision & put an end to your suffering. I am so glad I did & in fact I love being circumcised.

Nervous123• in reply toStones3313053 months ago

Thank you, can you please explain what your experience of the steroid cream was? Did it improve things? How long for? Did it flare up when you came off of it? Did it stop being effective?

Norwich1Moderator• in reply toNervous1233 months ago

it is interesting to note that our NHS are of the view that there is no cure for LS. LS is not to be confused with Balanitis or Phimosis.