Hi all, after around 4 months of symptoms I was diagnosed with male genital Lichen sclerosus last week by a top professor in London. He has prescribed me with Dermovate (Clobetasol) ointment to use twice daily for a month. He gives me around a 70% chance of putting the disease into remission with the steroid ointment and avoiding circumcision. He has basically said that if this doesn’t work, a circumcision will cure my LS. This seems incredibly strange to me because the LS is mainly on my glans to be honest. I don’t have any of the typical LS symptoms, the white plaques etc. I just have some very red patches on my gland that look 10x worse when I’m erect. The red areas are around my Meatus and a patch further down the glans. I would love to call on some of your knowledge guys if possible, firstly has anyone successfully treated their BXO/LS with the ultra potent steroid? And failing that have they actually had circumcision and it been successful? There have been numerous studies that show that circumcision is curative in upwards of 75% of LS sufferers. Would love to hear of anyone’s stories. I truly haven’t got a clue what I’ll do if the steroid ointment fails.
Diagnosed With Lichen Sclerosus (BXO)... - Men's Health Foru...
Hopefully someone who has been on this journey will be along to support you. Meanwhile this might help: nhs.uk/conditions/lichen-sc...
Hi, sorry to hear you have been diagnosed with LS... I was diagnosed around 3 months ago with the same condition. I am 2 months in using Dermovate and it has helped a lot. I have been advised the LS can now be controlled and I shouldn't need to be circ'd. I'll just have to wait and see on that..
The way you have described your condition... it actually sounds more like Zoon's Balanitis. LS usually shows up as a lightish/white discolouration. Read up on Zoon's Balanitis..!
I'm going to give you some good advice. Go and get as many opinions as you can on this as mistakes by "Professionals" are often made. I was diagnosed with Zoon's when in fact I had LS. Go see your doctor and ask to see a Dermatologist, a Urologist and also go to your local sexual health clinic to confirm a correct diagnosis.
If it turns out to be LS I think you are in the early stages and you should get a good result using the Dermovate.
Best of luck and let me know how you get on..
Thank you very much for the advice. It’s a weird one, because my symptoms are truly not that bad. Intermittent redness but much more prominent when erect. From experience, how long did it take for the dermovate to really get hold of your symptoms? I’m 10 days in and not a lot has changed to be honest. Have you had sex etc since your diagnoses? And can you function properly sexually now you have a hold of your LS with the Dermovate? Really appreciate you coming back and replying to me. Thank you.
And yes I too was shocked at the LS diagnoses. Nothing I researched online looked like the condition I have. But I was diagnosed by somebody called Professor Bunker, have you heard of him? If you haven’t then look him up. He has publications on LS, he said he see’s many cases like mine.. where it’s primarily redness and not the whiteness people expect. He also seems to think it’s easier to treat someone with my severity of disease.. so I’m hoping he’s right! I was diagnosed my him looking at around 30 photos though as we couldn’t have a face to face consultation. So certainly, I’ll wait and have a face to face consultation with him for him to absolutely confirm the diagnoses before I consider a circumcision.
Hi... Basically the Dermovate slackens and softens the inner foreskin scarring [which you don't have] and stops the soreness/inflammation. It worked almost immediately for me in the first week. It appears to work in some cases better than others. It's still early days for me and I don't know what the future holds..
As previously mentioned I would still get a 2nd diagnosis from a urologist or STI clinic as they deal only with the sexual areas.. I'm saying this as my Dermo diagnosed me incorrectly and I've heard many cases of this.
LS is a slow moving disease and I would take my time before making any rash decisions re circumcision etc, particularly as you are in the early stages if it is LS.. If you have no foreskin scarring I think you have a good chance of full remission, but you may well have to continue using a steroid cream indefinitely.
These are my personal views and i'm not a Doc, but guys who have experienced these conditions appear to give the best help and advice.
I've never had any sexual prob's at all with the LS... everything functioning as normal.
Have you any idea's what caused your prob in the first place..?
Ah okay. I will certainly take my time and hope to get some better results with the Dermovate. My case of LS certainly doesn’t look like any other case of LS I’ve seen. Absolutely no whitening of the skin etc so I’ll have to just see how it goes. I had like a friction burn on my glans from sexual activity and it kind of developed from there I think. Misdiagnosed as thrush etc and told it was nothing serious numerous times. But it just never went away. Glad it doesn’t impact you sexually. That’s my big worry with it.
Interesting, as mine was also diagnosed as thrush originally. This is why i've been asking other LS sufferers if they have any idea what kicked it off.
I had many visits to different clinics who didn't appear to take it too seriously... eventually I diagnosed myself from info on the net, which is why I suggest getting more than one opinion.
I came across some info today that said LS can start as a "redness or whitish" colour on the glans. First time I've read this in any previous info. I have also read that if you catch LS in the very early stages it can possibly be reversed and cured.
Best of luck..
I think that’s the go to diagnoses for a GP if they don’t really know what’s going on with symptoms like ours. Ive read a lot that people that have LS are previously misdiagnosed with Thrush and other minor issues. I mean I was told by my GP that if she was examine my Penis for another reason and I didn’t point out where the inflammation is she genuinely wouldn’t have noticed it. I mean I have to be honest, when flaccid you could easily miss it. It’s so much more prominent when erect for me, when all of the blood is in the area it really highlights where the inflammation is. The skin on my glans will also go all wrinkly after an erection if I haven’t moisturised, and will then almost peel off. So I’m guessing if I had a circumcision and the glans skin “toughened up” this symptom would probably stop too. I certainly want to get an opinion from a urologist. I’ve gone to the best male genital skin dermatologist in the country so I’ll stick with him from the dermatology side, but I think I need a urologists opinion too. So yeah basically, Professor Bunker’s opinion is basically the earlier you do something about LS Into the condition the better. Whether that be by Steroid ointment or by circumcision. Good luck to you too buddy, keep me updated with how you’re getting on.
I was on the same boat. I was prescribed same ointment and was told 90% chance it would work. NOT. So I had the circumcision 3 weeks ago. Still dealing with recovery. I to have many questions.
Just foreskin. I dealt with this for 9 months. First family Dr, then dermatologist, then urologist. Tried lots of creams and ointments. Nothing worked. Much better now but i don't know how I feel about getting circumcision. Not happy. Maybe it's all in my mind.
Hope it’s cured it for you mate. Mines mainly on my glans, redness around my meatus and a defined patch further down the glans. My foreskin has been a little red at times but no whiteness or defined patches etc. I’ll continue with the Dermovate and hopefully it’ll start making more of a difference.
Hi, sorry to hear you're not too happy with your "circ", although it's very early days and I hear it gets better with time... probably at least a couple of months before things settle.
There is also a lot of info on this site that recommends using coconut oil on the scar area's.
I've been replying to Terrylacker also as I was diagnosed with LS around 3 months ago.
When you say the Dermovate didn't work for you... did the soreness keep returning and did it not slacken/soften the inner foreskin scarring.
Do you have any idea what caused your LS..?
I'm learning that we just need time to heal. Some more than others. Best of luck bro.
Hey Man, sorry to hear you have been diagnosed with LS. I also had it some years back I tried the steroid creams but when I stopped or cut it back the LS would come back. I eventually had the circumcision and have to say I haven't looked back since. It is slow progressing condition so don't rush into anything try the creams and see the specialist when you can.
Hi mate, I think I read your post actually! So you had it on the glans etc and then when you had the circumcision all of your symptoms stopped? It is literally because the local environment of glans changes? The Dermatologist that diagnosed me virtually guaranteed cure of the condition with a circumcision so it’s something I will absolutely consider if the steroid ointment continues to fail.
Hey Man, yes that is correct for me all of my symptoms stopped after having the circumcision, once the environment of the glans changed the symptoms cleared up. Your dermatologist is right circumcision is usually curative.
Ah nice. Crazy that it can be cured by just removing the foreskin but in theory it makes sense. How long after you had your circumcision did it take for the symptoms to stop? Or was it virtually straight away?
Yeah the foreskin was gone and any marks I had left on my glans gradually faded over time. I did used a little steroid cream for a short period of time. My biggest worry when I had it was if it got into my urethra and I couldn't be dealing with using steroid creams over a long period that's why I had the circumcision instead.
Makes the thought of it more encouraging. I presume I’ll have to go for the same type of cut as you? From what I’ve read obviously as much skin as possible needs to be removed to allow the glans the conditions it needs to fully recover. Yeah I worry about the urethra involvement too. The Dermatologist I’ve spoken with said that it’s no good to be using them for a long period, the results will be far better if circumcised early. It’s just a big decision to take isn’t it. Didn’t think at the start of 2020 I’d probably lose my foreskin this year haha.
Well don't rush any decisions take your time give the cream a chance and see how it goes it should improve it but when you stop using it. It could come back it depends how much the LS has spread. for me the circumcision was a big decision too but once I made it I was happy with it
I won’t, thank you for the advice. I’m 11 days into use of the Dermovate and to be honest it really hasn’t made much difference. But the dermatologist has said use it for a month so that’s what I’ll do and I’ll see where I am then. I’m glad it worked out well for you buddy!
I have Another question to ask you if you if you don’t mind? Now that your LS has gone, do you have any specific moisturising regimens that you follow etc? Or do you literally just try to avoid irritants? I really don’t want this to affect me say if I’m on holiday and I want to go in a swimming pool or the sea. Have you had to stop using swimming pools or anything like that?
Hey Man, you should know after a month if the cream is helping. I do use some moisturiser E45 or Adex Gel I find good and I actually swim quite a bit before the covid-19 I would swim 3 to 4 time a week so there's no problem with that.
Cheers mate, I’ll keep an open mind until the month is out then. Just frustrating not really seeing any results as of yet! And sweet, so you moisturise the area once/twice daily or a lot more regularly throughout the day? And that’s great news. I don’t swim very often.. only really on vacation. I don’t want this to affect me when I want to swim in the sea etc.
I'd give it some more time for it to work but after 10 days you probably should have seen some improvement. Should be no problem with swimming. I only moisturiser when I think of it now it wouldn't be every day. at first I did it twice a day with Bio-Oil sometimes I still use it but it's mostly Adex Gel or E45 nowadays.
I mean I have to be honest, my signs are very subtle compared with the picture I saw of your LS. Like I’ve mentioned before I don’t have one spec of white scarring. Just redness around the meatus etc. But yeah the Dermovate hasn’t made any difference really, sometimes it looks okay sometimes it looks relatively red. And ah okay mate, really happy for you that you’ve got to a point where you’ve almost forgotten about your LS and you don’t really need to take any particular steps to keep it at bay. Clearly you fell into the 75%+ of people that cure their LS with circumcision.
Just looking back at your old picture of your LS. Your glans looks really inflamed in it. Did it feel like all of your glans was inflamed as well as your foreskin and Frenulum?
Yeah I sopose it was thinking back about it but it was only really sore when the foreskin wouldn't retract and I'd get balanitis. There was always an odour I remember I think there could have been some kind of infection or bacteria which would not go away no matter what I tried.
Ah okay. That makes sense. Do you mind if I ask how long did you have noticeable symptoms and what were your first symptoms of your lichen Sclerosus? Did you have redness before you noticed the white patches or were the white patches the first symptoms you had?
Hi, I had it about 2 years before I seen my GP I first noticed a small white mark near my frenulum it progressed very slowly. eventually I did have some redness and inflammation but it wasn't painful until I developed balanitis and phimosis.
Hi, I first noticed little white spots around the frenulum, and a faint white patch on one side of my foreskin. The doc at the Sexual Health Clinic in the UK identified it as LS, and prescribed Dermovate, which clears it up if it flares up. This was about 6 years ago. Recently, my foreskin has become redder, and a bit swollen on one side, and the meatus is a bit red and causing me to spray. Spoke to the same doc, and said I was considering a circ. She rightly said that that can cause other problems. However, I think that moisture is building up under the foreskin (I also have type 2 diabetes) and I am concerned that if this is indeed LS with Balanitis (treated again with Dermovate and Canesten), that this might progress down the urethra and need further treatment. So all in all I am thinking that a circ should help, and reduce the chances of flare-up in future.
Sorry to hear that mate. See everyone says that white spots were their first symptoms.. I literally don’t have any. Did you not have associated redness etc? What other problems can circumcision cause.. I genuinely wouldn’t know. At least the Dermovate has kept it at bay for a while. Do you have flare up during sex etc or does the Dermovate stop all flare ups for you?
I have redness on the foreskin and tip. Dermovate does keep it at bay, but LS is slowly progressive. Vigorous activity makes things flare up.
Yes, I've been reading around Prof Bunker - some really useful stuff, thank you. How did you get to have a consultation with him - on the NHS , or privately ?
Just seen that you sent photos to him - how did that work? Did you have to pay a consultation fee etc.?
I paid £350 for the consultation. Stupidly expensive but this guy is the UK’s leading specialist in male genital skin disorders, so I was desperate to get the correct diagnoses and paid the fee. But yeah I sent lots of photos across to him to review before we had our consultation. He then called me up and we discussed the diagnoses, management and prognosis etc. He said my case is a subtle case of LS but needs to be treated none the less. He estimated to me that I have a 70% chance of avoiding circumcision but that I’d need to be circumcised if the steroid ointment didn’t work. In his opinion circumcision cures male LS.
Just rang up Prof Bs secretary. Said I need to provide a referral letter to set up a remote consultation. Is that what you had to do?
That’s correct mate. I got mine sent directly from my GP. Once that is done, they’ll be able to arrange a consultation time. He’s only doing one day per week at the moment, this is normally on a Tuesday. Once all is set up you’ll have a questionnaire etc to fill out and you’ll be able to send photos across through a secure network.
Hi Terry, Which location / number did you use to make the appointment? I want to make sure the referral gets through soonest. Was it via kmsprofessionals or a particular hospital, e.g. King Edward VII?