BXO

This is going to be a difficul post. In one of the previous posts, I vaguely wrote about a family member's newly diagnosed condition. I didn't know how much I should tell out of respect for them, but they recently told me I could post more details so that maybe if someone has insight on it, they could let me know. SO IF YOU HAVE HEARD OF BALANITIS XEROTICA OBLITERANS (BXO) PLEASE COMMENT.

My youngest brother Norman, who just turned 15 was not circumcised at birth. My family felt there was no medical need for cutting your newborn baby boy. It never seemed to be a big deal, but apparently for the past 2 years, Norman's foreskin has been closing up, preventing him from having a normal pee stream. He was too embarassed to tell mom, so he looked it up online himself. He diagnosed it as 'phimosis' and finally broke down and told my mom.

Thus, over 2 months ago, he was taken to the doctor where they decided that circumcision was the way to go. He took a week or so for the incision to heal, and said it wasn't that bad. BUT his tip had never healed. Apparently and this is a lot of disturbing detail, his tip was so used to being covered by the foreskin, it was always soaked in urine, and was also adhering to the foreskin. So since it was removed, the skin there is raw and causing him so much pain, he never leaves his room, and just eats, bathes and plays his game.

They went to his primary doctor, a urologist, and just recently a dermotologist, all of whom were shocked and dumbfounded by his condition not improving. This gave an already depressed 15 yr old NO comfort or relief. Since the circumcision, his foreskin was sent for histology, and revealed the cause of his phimosis as what they called 'Lichen Sclerosis'. So we all searched for any information on LS and couldn't find much, except for women. I finally found a site that said the male genital variant of LS is called Balanitis Xerotica Obliterans (BXO).

Now there is an abundance of information on BXO. Initially, it was heartbreaking and worsened our prognosis of what Norman could possibly be dealing with. I found an article for a medical journal in the UK, where they have doctors who specifically deal with this condition. I read all 10 pages--it's the perfect explanation of the condition because whereas we had been reading individual's dramatic stories of what they went through, this article in a medical journal was made for other doctors--it was a study over >20 years of what worked on the >500 patients treated over the course. I will try to summarize the findings here, but the whole article is here. What is confusing about the condition was that in this study, it seems to be that it only affects uncircumcized men, but since talking to a nurse about it, it seems it can affect both...

(this is where I am confused and scared about our son Lucas who we did not circumcize. This is why my appointment with his doctor pissed me off...I was asking the dr. whether or not I should circumcize Lucas now to prevent BXO--which he had never heard of. And since I am the one who found the BXO info, he was really dismissive. I asked him flat-out "is there a medical necessity to circumcize?!" and I asked him why his sons were circumsized..he said "personal reasons" which basically translate to "aesthetic reasons". He said "most people only do it now for parental preference." wierd. we shouldn't have a preference for our children's genitalia look. Which is why we didn't do it. Now, things have changed as it may serve a medical purpose. Since we haven't talked to a doctor familiar with BXO, we haven't decided what to do yet...It just makes me mad because you try to educate yourself about things like this when you're a parent, and all I have ever heard as an argument for circ, was that it's less likely to transmit STDs or AIDS, which are totally preventable. Not a condition like this.)

So the condition was first described in 1928 by Stuhmer, and is now considered the male genital variant of lichen sclerosus et atrophicus. Genetic factors are implicated, and there is a higher incidence of auto-immune disorders (diabetes is in my family). In the onset, there is discoloration of the glans, can be itchy and hence are sometimes confused as yeast infections. The involved areas of skin become inelastic and prone to fissuring, and prolonged may lead to the foreskin adhering to the glans, making circumcision difficult--so it shouldn't be delegated to a surgeon unfamiliar with BXO (unfortunately we didn't know this when he had it done...none of the doctors have heard of this. I had to find it and now there are limited doctors in this country who deal with it..more on that later in this post).

The scary part is that chronic instability caused by BXO has an acknowledged connection to SCC, or squamous cell carcinoma.

If the condition spreads to the urethra, (pee hole) more drastic measures are required. More on this later-

It says hyperkeratosis which is caused by a Vitamin A deficiency. He has not been tested for this yet.

Of the 300 patients with BXO limited to the foreskin or glans (tip) only, 287 only required circumcision as treatment.The remaining 13 required further surgeries- urethroplasty using mucousal grafts, or glans resurfacing.

Of the 287 who only were circumcized, only 11 had recurrences requiring either glans resurfacing, or urethroplasty...

Okay, so at this point with Norman, since we haven't yet gone to a doctor who even knows what BXO is, we are hoping that it's just taking a little longer to completely heal and the circumcision was all he needed. But it's scary because if delayed, it can spread to his urethra.

Let me explain what urethroplasty is, and by the way, most cases I have heard of said it sounds a lot worse than it is. So in the crudest of terms, the penis is fileted and the section of the urethra affected is excised, and replaced with buccal mucosa grafts (buccal means taken from the inside of your cheek) or bladder mucosa grafts. It is reconstituted at 4 months. It's a long seemingly extensive treatment, BUT the good news is, that according to this study, there have been no BXO recurrences in mucousal grafts to date Formerly they did skin grafts with regular skin, but learned that these didn't always take, because it needed to be tissue that was used to being wet--hence in the cheek, or bladder.

Another hopeful segment of the article pertaining to Norman:

"Mild glans disease may revert to a normal appearance within 6 months [of the circumcision] and with more severe involvement, resolution may continue for up to 2 yrs after circumcision, although some permanent scarring may remain."

An important part:

"BXO is a common disease, yet it's true incidence is not appreciated because most cases are cured by circumcision, and unfortunately many surgeons still fail to send their circumcision specimens for histology. This practice is becoming medicolegally indefensible in a litigation-conscious society, where the clinical sequalae of BXO are often misinterpreted by the patient as surgical errors. "

Some of the severe cases led to SCC, BUT these doctors stress that the traditional mutilating operations are unwarranted and they give other alternative surgeries that I won't go into right now. But they also stress that radiotherapy (or chemo) shouldn't be used when the patient has carcinoma caused by BXO because BXO "spreads aggressively and relentlessly in immuno-compromised, irradiated tissues, leading to florid and extensive involvement of the external genital skin and the urethra, making management difficult."

And most importantly, here is the Suggested Treatment Protocol:
* If the condition, as observed clinically, is limited to the foreskin, then circumcision is curative and provides histological confirmation of the disease.

* If there is associated discoloration of the glans, but with no scarring, ulceration or fusion to the foreskin, simple circumcision is again likely to be curative.

* Potent topical steroid creams may be a useful adjunct to manage localized areas that are reluctant to settle after circumcision, But we regard steroids as palliative rather than curative.

* If the coronal sulcus is obliterated by adhesions and the remaining glans skin is in reasonable condition, then we recommend release of the buried coronal ridge by careful sharp dissection, and allowing healing by secondary re-epithelialization of the raw area.

* If the glans is extensively scarred and disfigured, or if the surface remains unstable and symptomatic, then total resurfacing of the glans with healthy new skin is recommended. This improves aesthetic appearance and should remove the risk of progression to SCC.

* If SCC of the glans occurs, it is best treated by conservative, reconstructive surgery, not radiotherapy.

* Meatal BXO may respond to minor surgery and topical steroids, but stenosis is likely to recur if there is already established involvement of the distal urethra.

* The treatment for urethral BXO is excision of the involved urethra and substitution with full thickness buccal mucosa, or a combination of buccal/bladder mucosa in more extensive disease.


I haven't been able to talk to Norman as he is totally isolating himself and we are all worried about his mental health now. I realize how frustrating it must be to have all these doctors not know what is wrong with you. So I found a urologist in this country who SPECIALIZES in BXO. Check him out: http://msurology.com/doctors/dr_charles_secrest.html
But he is in Jackson, MS. I called his office and spoke to his nurse. She seemed like it was a common condition and acknowledged that not many doctors specialize or are even familiar with BXO, which is why about 50% of their clientele are from out of state. Most of the men treated for it are older than Norman. None of them have developed cancer. She said the first mode of treatment is to test his testosterone levels, which are usually low in BXO and they prescribe a testosterone cream and go from there depending on the extent of the disease. They are requesting that we have Norman's primary doctor fax his medical records to Mississippi to assess whether Norman should go out there. I think we should go. Mom seems to not think we need to, but I think we have to! This doctor knows what to look for, and how to keep it at bay. I don't trust these doctors that don't know what BXO is--think of how relieving it will be for Norman to see and talk to a doctor who sees/treats patients with the same condition day in and day out?

So that is where we are at today. I know this was a lot of information but more people need to learn about it to prevent it from spreading. My concerns about Lucas are still there, even though the nurse said many of the BXO patients were circumcized. If they go to MS, I hope to go with them to ask the doctor his opinion on circumcision.

Thanks for reading and any input is appreciated. Please pray for Norman's recovery and mental health. He is at an age that this really will hurt him; he is wondering if he will ever be normal again...if he will ever not be in pain...if he will ever get married and have a family...