Chlobetosol

I've been told that using soap will only irritate it. I was washing with soap, then with Dove, and finally with cetaphil but the OB/GYN said only water - damp cloth, wipe gently. I'm also using a peri bottle to rinse after using the toilet. 

My understanding is, Clob should be tapered down to once or twice a week the third month after diagnosis. It does knock out the immune response, but doesn't heal the skin, oestrogen cream is used for that, along with various oils, especially olive oil for a lot of women. I read that Clob is stepped up only during a flare-up, not for daily use.

Hi maggie, while I may not have been given the best of advice, from a GP and 1 dermatologist, I found that the only way to control my LS was to use Clobetasol on a regular basis.  In practice, I can stretch not applying it until the 3rd day; that is, no application for two complete days.

Just to add, my LS exists on the head of my penis, and the underneath part of the foreskin.  Specifically, the main complicating factor exists because I had a tight foreskin / phimosis as a teenager - AND, it is where I managed to separate the foreskin from being attached and layered on top of itself, and from also being attached the head itself, that the LS scarring mainly occurs now.

  So yes, for women the regularity with which I use Clob is likely to be too much.  However, this is the only way I can achieve healthy penile skin, particularly if I am sexually active - and this is when I often apply Clob every day, and sometimes 2 or 3 times a day.

Sorry Wee Dugie for just assuming you were another woman. Of course you must do what's right for you. Have the oils? Borax solution? Not helped for you? How about testosterone cream in your case? Even women have used it combined with oestrogen too. That can be good allegedly for healing the skin they say. My white skin was cleared with all the treatments I used, but I'm left with the tight perineal skin, but things look healthy apart from that, for now at least. I swear by olive oil to nourish my skin, as do a lot of other women. Wishing you all the best in your quest to keep LS at bay.

Thanks maggie for your follow-up reply!  Just to give you the specifics: I have only ever tried Clobetasol, both the Dermovate and ClobaDerm brands.  I am prescribed 100 gram ointment at a time.  This typically lasts me way in excess of a year: I suppose that gives an insight to the amount i am actually using! 

  I have tried using plain / everyday olive oil, and that was no good.  I think my complication is that the LS largely exists at the trauma site where I managed to separate my foreskin from what could be described as the skin on the main shaft of my penis.  Actually, this mirrors the shape of the head / glans of the penis itself {typically described as a part-bell, or helmet shape} and this is the area in which I apply, then, massage in the Clob.  I guess the female analogy would be if the labia was fused during late-childhood, and during early adult years these were separated with non-medical intervention, there would always remain damage to the skin tissue where the 2 layers of skin were physically attached.  The bonus I have {I am now 61YOA} with having used the Clob is that ONLY in the last 2 years my penis head looks like a normal adult penis when it is erect, as I always thought it looked quite deformed.

   While I am probably using a little-more of the clob now, as I apply it more often than previously, I think that the resultant health looking skin is worth the risk of me creating a long-term issue with constant use of the Clob.  I did have a concern as to whether I should be using it long-term, but the simple advice I was given was to keep using it!

  Thank you for your other suggestions as to what I can try > testosterone sounds interesting.  I am in the UK, so not sure I could only access this via a doctor's prescription?  The most likely response you get from a GP here is that if what I am doing is working, why bother with anything else? they will say!

   Just 2 closing remarks: I follow these discussions {Women's Health / LS } to pick up useful tips as I am a regular contributor on this site to the Penis Disorders discussions.  In the 3+ months I have done this no males have posted any LS issues for me to pass-on these: this in itself shows how few % of men have the condition, as well as, fewer men seek advice about their health concerns anyway!  Fundamentally, I am often quite moved by the horror-stories of women's personal experiences of LS - we men with the condition get-off very lightly in comparison as it ONLY seems to effect the head and surrounding skin of the penis.

  Finally, please as Mom's, when your uncircumcised son's are going through puberty they need to be informed of need to ensure their foreskin becomes fully detached from the head of the penis, as, in my case, no one told me about this and I have suffered the consequences of this ever since.  Including, not having the confidence to seek sexual partners as I thought my penis was mal-formed - again further evidence that men don't talk about 'their privates' or seek medical advice as to what to do about it!

 

Hi again Wee Dugie, thanks for sharing your experiences. I am in the UK also, Cornwall in fact. My GP's have been no help whatsoever. The only positive was they referred me to specialists who could help me. I'm actually 58 today lol, and mine was only diagnosed 6 months ago, probably had it about 9 months. Definitely hormone related, like most women on here. Actually, talking about yourself at a young age, brings me to mention my 8 year old grandson. He's been to the GP a few times with his mum about the Phimosis condition, and balanitis too, but they insist he doesn't need a circumcision, and won't refer him to a specialist. So it's a bit of an ongoing situation for him, and his mum is usually very persistent with the doctors etc. I'm glad you seem not too bad yourself, as am I really. I just need to keep looking after myself, and maybe have surgery, maybe not. Take care x

Hi maggie, happy birthday for yesterday!  As I have also found with GP's, they are all too often part of the problem, rather than being part of the solution.  For example, in terms of conditions such as CFS / ME, services do exist that can alleviate individual circumstances - but most GP's have no understanding of how referral to such services can benefit their patients and will not make a referral, and unless you are a sufferer who is very assertive, most times the needed help does not occur!!!

* In terms of your Grandson, PLEASE all current medical wisdom states circumcision should not be done!  Phimosis cannot exist at that age as the foreskin WILL NOT begin to separate {and, should not be forced to separate!}  until puberty has begun, and for some males, separation may not occur until way into young adulthood.  So, get the balanitis sorted, yes - no circumcision on any account!

You grandson is the only person who makes that decision when he is old enough to balance all the evidence and come to an informed decision as to what should happen to HIS own body!

Rather that post web site links that may mean this message is automatically deleted, here are a couple of web sites you should Google on circumcision and young males ...

> Mothers Against Circumcision - Saving Babies by Educating Moms - The Circumcision Decision

Another is a site I contacted, you can also contact a retired UK Doctor who will give you individual advice, and may even offer a free consultation >

Norm UK - Respect Your Son's Body     > you can download a leaflet on there looking at the whole issues from a medical point of view in terms of the Con's and risks associated with circumcision.

I can even PM {Personal Message} the retired Doctor's phone number to you via the Patient Info site if you wish? .....

Hi Wee Dugie, thanks very much for the info regarding my grandson. As for GP's, not had the best care lately myself. Actually a lady GP diagnosed my grandson with Phimosis as well as balanitis. But, as you say, it is probably normal for his age, not the balanitis of course, but cleanliness and Fucidine cream for that. Many years back I was diagnosed with Chronic Fatigue, but it did get better over time, but no two people are the same with any condition. I was told by 2 male GP's that I didn't have LS, after I told them I was sure it was. But at least I did get referred, and was proven right. My worst issue post-menopause has been my mental state, and basically I'm working hard on that, Mindfulness, EFT Tapping, especially Hypnotherapy. My GP's have been very lacking in compassion regarding this issue, but I know it has to come from me, even though it's mostly down to my hormone status. I can't tolerate HRT systemically, but that has it's pros and cons anyway. Forgot to thank you for the birthday wishes..........thank you :-) x

My OB/GYN told me she felt I'd had this at least 20 years, but I never knew because being raised in a good "Catholic" family, we never talked about stuff like this. I thought the periodic itching was due to not being clean enough so I became almost OCD about it. Even tried using soap with tea tree oil in it (don't try that - it was painful) which just made everything worse until I could no longer avoid it and I finally went to a doctor. So, it's not just men. 

Actually I don't agree with her saying everyone has flare-ups. Mine has been fine since treatment, and on maintenance amounts of everything. No two people are the same, and I know of some women who live a normal life with LS and it's well-controlled, and few, if any, symptoms. I was told to keep doing what I'm doing because it's looking well-controlled and healthy. I do have some tight skin around the perineum area, but no whiteness, and may decide on a surgical procedure to lengthen my opening, but I'm happy it looks healthy overall. So please take heart x

Thanks, that's good to hear!