BXO / LS for more than 1.5 years
Posted , 11 users are following.
I hope to get feedback or help, from someone else struggling with the same problem as I am getting real desperate 😦
1.5 year ago (Nov 2019), I started to have pain and irritation on the glans while at the same time appeared some white patches. Around the patches eventually after having sex or masturbation would blister (not bleeding but would leave a mark that could take a week to heal).
After visiting lots of derms and urologits, which said "it was nothing" , I got eventually diagnosed (clinical) with Lichen Sclerosus (no biopsy taken) in April 2020. It seems that it also affected all the nails as they got very thin and brittle, and the skin around the anus, as it gets very irritated while doing sports.
I got prescribed only with Clobetasol ointment for the penis glans. 2x day for 1 month, 1x day for 1 month, 3x week for 1 month, 2x week for 3 months, and 1x week for 6 months. While in the last 6 months, I was applying daily A+D ointment.
While in the first month of clobetasol treatment, I had not any type of sexual activity.
The glans appeareance improved a little bit somehow, but after having sex or masturbation, white patches show up again and irritation which eventually fades after some hours.
I got now prescribed with Protopic 0,1% ointment, for 3 weeks. I am almost at the end of the third week and I am not seeing any improvement.
Any doctor here would recommend what could be next steps? Would circumcision help further or resolve the problem? Is a biopsy recommended in any case after such a long course of clobetasol?
Is there any 2nd line treatment for systemic LS as it is affecting as well nails and skin around anus? I´ve asked this to my derm and he said that there is no effective systemic treatment for LS, which is very discouraging.
At the I'm afraid it could be related to another problem not related to LS and something else more serious.
I attach two pics of my glans. One before having sex, which looks almost "normal" and second picture after sex where the white patches and irritation arises.
Many thanks for your help!
1 like, 17 replies
aboyko mf2019
Posted
I would do a circumcision.
perhaps this is a genetic mutation associated with a deficiency in the conversion of folic acid; perhaps an alkaline buffer should be used. and you need to watch the anus
rd1234 aboyko
Posted
Are you a Doctor? Based on what things are you suggesting circumcision will solve the problem if the poster seems to have systemic lichen sclerosus? Never heard alkaline buffer for treatment of LS...
aboyko rd1234
Posted
usually this is done with recurrent balanitis. and it really helps. I did this more than once in the clinic
kobus16097 mf2019
Posted
May I ask if the redness on the glans after activity is always in the same place, or does it vary over the glans area. Does it also differ in the amount of redness?
Does it seems to you that heat and friction activate the redness?
How long does the redness last before the glans return to normal?
rd1234 kobus16097
Posted
my mf2019 account got locked so im replying with this account.
The excessive redness is all over the glans in general but more around the meatus. But at the end all is read except the area with the patches as shown in the second picture. I completly avoid friction in the glans when masturbating and still the redness and patching is there. It´s more noticeable after ejaculation.
At moments Im not really sure if they are gray patches or the redness comes from some form of erosive Lichen Slcerosus.
Anyhow, before the clobetasol treatment the redness would last at least between 3 - 4 days after sex or masturbation, and after time, that several areas around white/gray patches near the meatus become fragile and could take at least one week more to heal.
After the 1 year clobetasol treatment the redness fades away after 1 hour. Now im trying with protopic 0,1 but same results.
kobus16097 mf2019
Posted
I was also told by dermatologist that its Lenchin Sclerosis, got Protopic 0.1% to be applied once daily. Must say my situation improved, as I now have redness maybe once or twice a week, redness fades away normally after 1hr. Haven't had any sexual activity for 3 months now.
rd1234 kobus16097
Posted
Did your glans look the same as mine as in 2nd picture, after having sex? how it looks normal? are still white small dots noticeable?
My LS is only affecting the glans, no foreskin involvement but it is affecting my nails and redness around the anus.
How much time did you get prescribed for Protopic treament? I´ve read several cases from people using it as short as 3 weeks and others 6 months or more.
Im afraid it might not be LS at all but some form of Extramamary Paget Disease.
brad55719 mf2019
Posted
i am afraid that you dont have anything because what you have described is not LS at all it is just irritation from fraction it could be! your glans look healthy
mf2019 brad55719
Posted
I wish it was nothing as you say but unfortunately as I said it is affecting other areas such as nails and around the anus.
Im in the processes of getting asked for a biopsy, after 1.5 year of topical clobetasol , inflamation occurs after sex .
The problem around the anus is that it hurts / itchs after doing a simple 30 minute walk
rupert23703 mf2019
Posted
How do you apply the steroids? My doctor just gave me hydrocortisone and when I applied it my skin began to bleed.
My understanding is that LSA thins the foreskin. Do you put the steroid cream on the inside or outside of the foreskin? My inner foreskin is incredibly red and inflamed. I think if I put a steroid on it, it would melt!
mf2019 rupert23703
Posted
I was applying clobetasol ointment for 1.5 years and stopped because of little improvement in the white patches and because of skin thinning .
the redness after ejaculation persisted while doing the steroids but reduced inflamation around the meatus and itch.
Now Im using protopic 0,1 and the inflamation came back again
A-real-bro mf2019
Edited
You don't need a circumcision. Women have skin problems on their genitals way worse than men do, they don't cut parts of their genitals off.
Urine causes most skin problems on the head of the penis and the foreskin.
Try rolling back your foreskin each time you pee and drying afterwards with toilet paper. Do this every time you pee, same after you ejaculate.
I suffered with lichen sclerosus for years, steroid creams only worked temporarily. The above method solved my problem permanently.
You will see results very quickly, it should clear up in a week or two.
brian80731 mf2019
Posted
I have similar. Doctor and urologist couldn't pin point it. I had a consultation with a dermatologist and he said it could be a form of eczema. I proscribed steroid creams non of them worked. I've tried antifungal creams too and no change. The steroid creams seemed to make it slightly worse. Ever since I stopped them the plaques aren't as visible but the white patches are still slowly spreading. I have no pain/itching or any side effects
rd1234 brian80731
Posted
Did you have the chance to ask them to make a little biopsy? At this point if you have also been suffering of this for more than 1 year, I would advise you to visit a senior dermatologist or urologist and ask them to take it.
Had the same. Steroids seems to make it worse at some point after the beginning of the treatment. Im now trying protopic 0.1. but white patches are spreading also.
Ou95du rd1234
Posted
Hello, are you sure you have LS? because they said LS is a white growth that sits on top of normal level of the skin... and yours doesn't look like that...
Ou95du brian80731
Posted
same I have similar but no symptoms, and doctor and dermatologist told me that it was not LS