Is it penile lichen sclerosis? (dermoscopy attached)
Posted , 7 users are following.
Hi there,
I have a long story of chronic balanitis which started sometime in 2018 (after I had a hand surgery). Since then, I've been trying to handle this long-term problem, visiting a countless number of doctors and other specialists in a bid to find out what exact diagnosis I have (chronic balanitis is a very vague definition). Penile Lichen sclerosus (LS) (aka BXO) was suspected on several occasions but wasn't definitively diagnosed.
Is there anyone who has some experience in terms of lichen sclerosus dermoscopy? I have several pictures that resemble LS. As I have no medical expertise, there's no way I could read it.
P.S: in case you need info on some of underlying health issues that I have, which might be related to my current penile problem, I have vitamin D and ceruloplasmin insufficiency, kidney stones and chronic rhinitis (most of these issues, except for kidney stones, appeared simultaneously with my penile problem). I also have increased levels of leukocytes (blood test) and neutrophils (nasal swab).
Thanks!
2 likes, 18 replies
Wee_Dugie recorder7754
Edited
Have you actually seen a Dermatologist? In many 'westernised' countries of the world there are increasing numbers of Genital Skin specialist Dermatologists, ideally, it would be one of these specialists that you should see.
What you need is to have a Biopsy carried out on a typical area of your damaged genital skin to prove the presence of any Lichen based disorder. I am unaware of the criteria a biopsy analysis would entail.
In what country do you live ...... ?
recorder7754 Wee_Dugie
Posted
Hi there,
Thanks for your response.
Currently I reside in Ukraine because of the pandemic. Unfortunately, the healthcare system here isn't effective and of high quality, but I did consult a number of dermatologists and urologists, and they didn't confirm that it was LS (after a biopsy had been carried out, of course; diagnosis: chronic balanitis).
Also, before I moved to Ukraine, I had lived in the UK for some time, when the condition was only beginning to appear. In fact, I visited several general practitioners/urologists/dermatologists, and they didn't mention anything about LS but concluded that it might've been some form of balanitis. In any case, I'm moving to Belgium in June so going to find a Skin specialist there.
Wee_Dugie recorder7754
Posted
Thanks for the further information.
If you want to add further detail once you get to Belgium and have seen a skin specialist please do .....
recorder7754 Wee_Dugie
Posted
Hi there,
I have recently visited a dermatologist in Brussels concerning my skin condition. Shortly speaking, the doctor took a look at the skin and quickly concluded that it wasn't LS. However, when I showed him the results of the skin biopsy, he said that he wasn't convinced and so wasn't going to accept the results. He explained that the laboratory that analysed the sample might have come to a wrong conclusion, and so he suggested that I should have another biopsy but examined by a Belgian lab this time.
For now, I am not going to have another skin biopsy. However, I have recently received the pictures of my biopsy (microscopic images) from the Ukrainian lab and now going to send it to a Belgian lab for analysis. If I am lucky enough, I will not have to do another biopsy (only if they accept these pictures).
I will keep this thread updated.
thanks
Tizio recorder7754
Posted
Hi!
What are your symptoms?
I have been fighting for two years with a sort of balanitis that only gives me a dryness of the glans, not too much, but that still bothers me. I also thought of Lichen Sclerosus, appointed by a dermatologist who then told me that he did not mean the disease (an idiot) but I was excluded by all the other medical specialists I have seen. What symptoms exactly do you have?
I come from Italy and I am 27 years old, I was thinking of doing a biopsy myself after an endless series of analyzes and I check all NEGATIVE results. Would you like to compare us? Even privately, if you can.
recorder7754 Tizio
Posted
Hi there,
Thanks for your response.
At the very beginning, the only two symptoms I had were dryness and then some whiteness close to the urethral opening (something like a spot). Then once I started treating it, the glans became inflamed and numerous purple/reddish spots appeared across the glans. Well, the first circumcision really helped to reduce inflammation and ameliorate the symptoms (but then I got Peyronie, which is another story). Now the glans look more or less normal. That is to say, I do not have any inflammation any more but I still have some barely visible spots (or rush) across the glans (sometimes it isn't visible at all). Also another thing is that the glans has become whiter over the past year. It is especially visible after ejaculation: in that case the glans is covered with some visible white spots/rash but then disappear within 10 minutes.
Do you mean that you had a penile biopsy but then the result came back negative, right?
Tizio recorder7754
Posted
Hi!
Sorry if I answer late. My only symptoms were a dry glans which looks a little discolored and internal discomfort during ejaculation. I did NOT perform the biopsy and I hope I do not have to get it done, but I have performed all possible and imaginable tests on urine, blood and semen, I only miss the allergy tests and everything came out negative, except for swabs on the glans who first reported staphylococcus (disappeared after antibiotic treatment) and now the presence of enterococcus. I honestly don't know what to think, since I have been ruled out of any pathology, even skin, but I still have a dry glans, less dry than a few months ago, but still not completely healed. Doctors tell me I have to leave it alone and sit still, because it will get better on its own. This has been told to me by practically all doctors. I do not know what to think. But have you been excluded from lichen sclerosus? I would like to see the photo of your penis, if you can, to understand if the conditions are similar to mine.
recorder7754 Tizio
Posted
Hi there,
If you want to see some pictures to compare, check out my other threads - I published lots of pictures over the past year.
I mean if the only two problems that you have are dryness and slight discolouration, then you should be fine. Still, it would be a good idea to find a LS specialist to have a second opinion on it. At the beginning, I also had slight discolouration but recently it has been worsening while the glans has been becoming somewhat whiter (although it still doesn't look like LS).
Tizio recorder7754
Edited
The last dermatologist who visited me was an LS expert and he categorically excluded the pathology, the same for the other skin diseases that can arise on the penis. In his opinion, mine would be a problem related to trauma and if I have not yet recovered it is the fault of a cortisone cream that was prescribed to me by a first dermatologist who diagnosed me with LS saying that he did not mean the true disease and his own, but that he had used the term LS to indicate only dryness of the skin, practically a madman, not a doctor. Obviously this thing scared me to such an extent that I went to 7 other doctors who categorically excluded me from LS. Currently I do not have severe glans discoloration and the dryness seems to have reduced, but it is still a bit present anyway. I have not yet carried out a biopsy, since the last dermatologist, the Lichen Sclerosus expert, told me that it would be useless, because on an almost healthy skin like mine you would not understand anything and that in any case, for him , the LS is absent in my case. I assumed everything and more, I took creams, oral medicines, little was needed, perhaps a little antibiotic and antifungal, both oral, have given me benefit. Maybe it's really just a trauma. In any case, I saw your photos on the other thread you created, in fact your glans is very lightened, but I think due to the dryness and some topical therapy you will have done. If the biopsy is negative for LS, either repeat the biopsy at another testing center or have the biopsy analyzed by other medical specialists.
recorder7754 Tizio
Edited
For how long were you using a cortisone cream?
In fact, I visited a LS specialist a few days ago expecting him to conduct a second biopsy test. However, he told me that another biopsy wasn't needed as my condition doesn't look like LS at all and it would be a waste of time and resources. He underlined that it might be some other skin condition that also causes some discolouration (might be a response of my immune system).
Overall, my glans looks more or less normal most of the time (pinkish/greyish colour with some occasional discolouration). It is usually ejaculation that triggers some colour changes, meaning that red spots become more inflamed and whiteness/greyness gets much more visible (but lasts for about 15 minutes and then disappears). Interestingly, I have noticed that this 'temporary whiteness' is triggered by a number of factors like sweat, some types of food (still figuring out), sometimes alcohol and cigarettes. This is really bizarre because the glans might look completely healthy one day and then look quite worrisome the other day.
Tizio recorder7754
Edited
I too have ruled out lichen, as well as any other skin pathology. They tell me it was a question of trauma, between masturbation, wet wipes I used to cleanse myself and cortisone cream. I think I used the cortisone cream at least 6/7 times, but the bulk of the damage I suffered on the first application, as soon as I put it on, the penis got irritated, burned and dried even more, so I don't know if my current situation is more because of the cotton or something else. Regarding your last statement, which is that one day the glans seems to be fine and healthy and another day it makes us worry, it is true, but this makes me think that perhaps it is not a disease. I doubt that a disease changes signs overnight, I certainly noticed that the skin is less elastic. Have you already performed a first biopsy? However, if we have been ruled out lichen, which is the most worrying disease, we should be able to rest assured, even if I improve very slowly. The doctors told me that as much I can improve and return to health, so much can I stay like this, with damaged skin, which would not be very nice, but certainly better and more relaxing than a real disease. The point is that we don't know what the real trigger of everything was, nor what the cure is, because they only prescribed a moisturizer to use for 4 months, and only the first one has passed.
recorder7754 Tizio
Edited
"Regarding your last statement, which is that one day the glans seems to be fine and healthy and another day it makes us worry, it is true, but this makes me think that perhaps it is not a disease. " Yes, I talked about it to my dermatologist last week, he said it's completely fine to have your glans changing its colour every now and then. He explained that your glans is like a sponge, and its colour may change depending on what you eat, how you sleep, etc.
Yes, I had my first biopsy a year ago. LS wasn't confirmed but chronic balanitis was (with no obvious cause of it). Actually, I was going to have my second biopsy last week. However, my doctor told me that the glans looked completely normal (even though a little bit whitish/greyish), and it wasn't LS for sure but could've been some other skin condition (less serious). So, he decided not to conduct a second biopsy.
Yes, my doctor told me exactly the same thing: we don't know the cause and we have no cure. Still, the overall outlook isn't bad so far and it's dramatically improved since the initial stages of inflammation. I don't know about you but I've been using Cicaplast baume b5 La Roche-Posay, and it's proved to be quite effective at reducing the inflammation and improving the overall outlook - so I definitely recommend.
In my case, I don't worry about the inflammation any more (as it's mild and looks more or less normal most of the time). Ironically, the circumcision I had to treat LS-like inflammation caused Peyronie disease, so I've recently been struggling with this another problem which has proved to be as debilitating as LS. You try to treat one problem and then you get another one - lol
Tizio recorder7754
Posted
So we are in a kind of impasse? I've seen a lot of other situation totally similar to mine or to yours but everyone with no diagnosis, and it's disarming that no doctors on the planet could diagnose this situation, I won't belive it's beyond the nowadays medicine.
If it would be lichen sclerosus, after all this time, I'm pretty sure we have noticed something really bad happening, my situation go on since two years and my dermatologist said that in about one year a person could notice for real if have lichen sclerosus. So I'm supposing that this could be a totally different problem, maybe always related to a skin condition.
I have psoriasis under my soles and I'm thinking that mine cold be psoriasis on penis shaft too, cause in the last two or three weeks I've noticed that the penile shaft is getting a little bit dry. Anyway, my dermatologist said that my situation is not even related with psoriasis, so it's kinda frustrating, cause every situation possible the answer is "no, it's not it" (lucky for us) but if there is no diagnosis, it's even better sometimes, we have to wait a miracle and hope that it will heal by itself?
I'm very sorry for your Peronie's disease, is it very visible? Is there a solution? How is possible that you get it after circumcision?
recorder7754 Tizio
Posted
Well, I have no answer, to be honest. I have recently ignored the rush and focused on my Peyronnie problem instead. Yes, it's very visible and the penis looks, well, 'broken' with a significant deviation. I've no idea how I got it but I think it's either linked to the circumcision I had or to some autoimmune conditions like Behcet disease (going to get tested for it in the following days). There's no definitive solution but it can be improved by a surgery, hopefully.
Tizio recorder7754
Posted
Let me know how is your situation.
When everything started I noticed that my corpus spongiosus and the penis head started to not get hard like before the dryness.
The skin condition, in my situation, seems to be a little bit better, but still not like the original one, after erection my penis skin became wrinkled.
Hope we will solve this.
Do you have problems with erection of the corpus spongiosus of the penis and the glans?
dek47590 Tizio
Posted
Hey Tizio!
Me again 😉
Actually I have the same problem in terms of the blood flow and skin wrinkling. I have also spotted that glans are smaller that's why in my thread I begun working towards fuller erections.
I also saw a journal that stated that inflammed penile tissue shrinkages due to the inflammation itself and then, the scar tissue is formed. Maybe this is our problem - badly functioning skin(discolored), scar tissue like without enough blood supply to the tissues. Another reason to think about PRP procedure. Have you reache out to Dr. Casabona? He is a top expert in Italy.
Tizio dek47590
Posted
Hello
In fact I have a visit with an important urologist in Rome and I also sent an email to Dr. Casabona for safety, while waiting for him to let me know something, I asked him if the PRP was also indicated on skin of the genitals WITHOUT DISEASE, but simply ruined by chemicals. But he still didn't answer me.
dek47590 Tizio
Posted
Thanks for considering actually my case with in your email. I appreciate that! 😉
I saw your post at 8355's thread. The patch seems to be very similiar to mine.
I have recently started using Erbagil BANIVAL curation and its seems to be very beneficial for the tissues. These actually look more pinky and there are more blood vessels. I still believe that good blood flow will help with relieving the symptoms although it will take a long time.
best!