Balanitis - diagnosed with Lichen Planus and/or Lichen Sclerosus (penile rash)

hi! Im sorry, how are you doing the treatment with those creams?

I have a case similar to yours, but I never had a biopsy.

JJB, Iam a Penile LS sufferer and have been treating it for almost 8 years now. I can certainly give you any tips on the essential do's and don't's of the condition.

Thank you for highlighting about a Biopsy and the relative painless process when a local anaesthetic is used. A Biopsy is the ONLY way to confirm the presence or otherwise of ANY of the Lichen based conditions, the problem being, if NO Biopsy is conducted then what is being dealt with is suspected LS (or otherwise) and this therefore raises the opportunity for mis-diagnosis.

I am not in the least surprised that both the GP and Urologist did not realise what it was you had, and fortunately, the Dermatologist got at what was going on for you! I wonder how much time and uncertainty, and perhaps some level of stress, perhaps, at not knowing what was going on had on you?

I wonder why the Derm was unwilling to give initial treatment and was simply wanting to refer you on?

.

Can I ask do you have eczema or psoriasis any where on the body? My initial recommendation would be that in order to achieve stability and success in a treatment regime you may need to work towards only one of the ointments / creams.

My LS is controlled by using the Clobetasol Ointment (for some the cream version of this is not as effective) on a regular basis, and this is most often every other day. I would imagine the initial treatment regime you are on includes application of the Clobetasol either once or twice a day for 2 weeks, then either once a day or every other day for another 2 weeks for the Clobetasol?

The good news is that once you attain stability of a treatment regime you can get back to full loving relations with your wife, simply apply in the morning and you are 'good-to-go' in the evening. Depending on frequency of sex you may need to apply the Clobetasol (or other) everyday.

.

There are two major things to avoid: i.) you MUST avoid anything that is chemical based from contacting the infected (^)-areas - this includes soaps and things that you may have been using as a lube for sexual purposes. Wash the entire glans AND the foreskin with water only, ensure you are completely dry afterwards; ii.) you gain, potentially, very little benefit from the any cream / ointment you are using if it is NOT fully rubbed into ALL infected areas (^) - once applied you need to keep the skin supple by carefully manipulating it to retain suppleness and elasticity (essential for erections). Initially for YOU this will mean using light massage type motions as your skin can be easily damaged until the treatment regime has proved to be the correct one for your severity of condition.

.

(^) AREAS - you must be vigilant and look out for initial signs of distress around the head, foreskin and upper-shaft of the penis. This will look like dry skin that will not heal, red small bumps or spots you have not noticed before, or a general redness (can be red or simply look a very-slightly different shade of pigmentation to surrounding skin) ....

Any further question you may have please Reply here ONLY rather than PM me ....

For any male readers, I would also be interested in helping to set up a Male Genital Skin Disorders Forum on this site ........

Wow! So glad to here from you. This is really useful advice.

Earlier biopsy underneath the head of the penis and halfway down the shaft yielded "non-specific" readings but one said that his sample was consistent with an incomplete psoriasis plaque and the other pathologist said his sample was consistent with irritant contact dermatitis. Several months into my condition, the shaft got very red and irritated and that is why the derm, on the day of the first biopsy, took it from there even though I was convinced the redness on the shaft was secondary (probably due to latex condoms?).

I don't have psoriasis anywhere on my body UNLESS that earlier biopsy is correct about it possibly trying to form on the other side of the glans.

Even after the biopsy right on the primary lesion came out LP and/or LS, the derm still suspects irritant contact dermatitis. Yet I went 5 weeks with NOTHING touching it and there was no change. I asked him if he ever saw a case like mine in his 25 years of doctoring. The answer was NO. This is a rare disease, eh? 1 out of 300 people?

TREATMENT: I think the derm is hesitant about clobetasol because he still suspects dermatitis. But I told him to treat it as if it were LP or early stage LS. He agreed to let me continue Elidel daily and Clobetasol two times on Saturday and two times on Sunday. HOWEVER, and here I would like your advice: everything I read says to be aggressive in early stage to beat it back as much as possible? So I have been putting it on before bed and then in morning (with a gauze bandage taped over the top of the glans so it doesn't rub off when I walk.

A Male Genital Disorders forum would be great! I have found so many for women and the city near me has vulvavaginal disorders clinics. There doesn't seem to be anything comparable for men so Internet is our only outlet.

One last question: The biopsy said LP or early stage LS. I've read a lot and they both seem like very similar conditions with similar treatment. Is there something I should know about the difference between the two?

Thanks for posting!!!

Some pics. It has varied SO much over time but docs have had me throw multiple treatments at it.

here are some pics from before biopsy and clobetasol/Elidel.

This was after sex a couple of months ago:

These are last day or two after 5 days on clobetasol and 3 weeks on Elidel. Do you recommend I combine the two drugs? Or stick to one? :

QUESTION: Clobetasol is ultrapotent. Should I be worried about atrophy?

Oops. Other pics before biopsy:

Last day or two after 5 days of clobetasol:

This one was after sex (normally doesn't look that bad but that was vigorous sex (do you recommend no more vigorous intercourse?):

After 2.5 weeks of clobetasol (2x/day), major improvement. Itch gone. Only occasional irritation. Not out of the woods yet but much of the time I feel like I am almost 100%. I had sex and it didn't get all bruised like it did before. (The major lesion on left meatus did get redder but then faded overnight with steroid cream on it).

Pics from this morning.

I am still crossing my fingers because I have had improvement and then regression in past. The recommended treatment is 12 weeks of clobetasol 2x day.