Before I come out, just a quick update on my pending NET removal. I’ve met with the surgeon, had my MRI, and had my pre-op testing completed. Forward all engines! My surgeon, Dr. Kosari at Cedars-Sinai Medical Center in LA was very upbeat. He said the surgery should be buying me many years. I may get my gall bladder out as a bonus; this is a preventative measure since the octreotide injections that will likely be a long-term part of my life tend to gum up your gall bladder. Why do we have a gall bladder anyway since we can apparently survive quite nicely without one? Maybe they should just remove it at birth along with your appendix. My surgery is scheduled for 7 am February 28. Stay tuned.
At the risk of TMI, now for the closet. Not the closet you’re all thinking of (sorry to disappoint). It is an embarrassing medical closet. It tuns out I am afflicted with another hard-to-treat disease. If you are at all squeamish about the details of men’s anatomy, now’s the time to close your browser………
I have Peyronie’s disease. You can read all about it here. I’ll give you the one sentence definition: It is a condition whereby scar tissue builds up within your penis causing it to bend at a rather inconveniently acute angle (mine is about 70 degrees) that makes any kind of traditional bedroom fun geometrically impossible (not to mention extremely embarrassing). The cause is thought to be either an acute injury or (as in my case) accumulated unnoticeable minor injuries during intercourse. Woman-on-top is a big risk factor. As my urologist at Cedars-Sinai said, it is perhaps just abnormal wear and tear. Here’s what blows my mind: According to my urologist, 9% of older men have this condition (and 3% of younger men)!! How could nearly 10% of men have this condition and I never heard of it until Dr. Google revealed it to me? More likely than not, one or more readers of this blog also suffers this disease. It’s time to bring this disease out of the closet. Sure, this is an embarrassing ailment, but really is it more embarrassing than hemorrhoids? Worse than jock rot? Worse than ED? Worse than incontinence? We see all of these on tv ads everyday. Hopefully more awareness will lead to more research and more treatments. Hence my coming-out party.
I do understand why this malady is in the closet. It takes a very heavy psychological toll. Some men have been known to become suicidal. To be sure, as ailments go, there are many worse diagnoses. No one has died from Peyronie’s (not counting suicides). For me, the realization that I had a condition that was not immediately treatable (at least in Thailand), and that would prevent sexual activity, was devastating. Being otherwise healthy, but realizing sex was not going to be part of my life, hit hard. With the help of a very understanding partner, I focused on other aspects of life. In the end, I have to come to the realization that overall I’ve been pretty damn lucky, and there was still plenty to live for. But not being able to be intimate with my partner is still quite painful.
It started about 18 month’s ago, so I have known about it for awhile. Unfortunately, in Thailand, the only treatment they know about is radical surgery that sounded to me like partial castration. I even travelled to a so called “specialist” at a top end hospital in Bangkok. Surgical straightening, resulting in drastic shortening, was the only option he offered. Maybe I only imagined the sneer on his face.
This week I found out the good news that there is minimally invasive treatment for Peyronie’s available in the USA. The treatment involves expensive injections of FDA approved, scar dissolving Xiaflex, and physical therapy (kinda sounds like rehabbing a shoulder injury). My urologist said I am an ideal candidate – my condition has reached a “chronic” phase with no pain and no progression and my scar tissue is in the best location for this treatment. So there is hope! The treatment will necessitate anywhere from 1-4 sets of injections (each set done over a 5 day period) with each set of injections spaced 6 weeks apart. This would necessitate returning to LA from 1-4 times this year (I can’t have an injection while rehabbing my cancer surgery). Pending insurance approval, my first injection would be in August.
The question now will be, is it worth it? If I was 35 years old there would be no question, but at my age? The cost of 4 trips to the USA will be substantial. According to the doctor, the success rate is better than 50%, but I still risk spending money for nothing. This is a decision that I will need to make over the next few months. For now, I will concentrate on my upcoming surgery and the aftermath. I will revisit this once I am fully recovered. Who knows, by the end of the year I just might be once again an upstanding man (groan).
Thank you for allowing me to share this story. Just getting it out here is a cathartic. It will be nice not to have hide in the closet, and I’m ready for the inevitable banana jokes!