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My story about Peyronie’s disease
Peyronie’s disease was a condition I had never heard of until the June 2009 diagnosis. Here is my accounting of the experience from diagnosis to treatment and after. It may offer insight to some or a road map for others who find themselves faced with needing to make a decision about treating their Peyronie’s disease.
The Cause?
There is much about Peyronie’s disease that is just not well understood from what I’ve been able to learn. But I suspect a traumatic event while making love with my wife in January 2009 may have been the cause or at least a catalyst. Simply put, she was on top, it accidently slipped out, and she came down hard on my penis causing a painful bending to occur. I saw stars for a moment. The next day there was a visible bruise about the size of an eraser head on the top right side of the shaft nearer to the front of the penis. The bruise disappeared quickly and everything otherwise seemed to be okay.
Before continuing the story, let’s discuss erectile dysfunction. I was 57 years old at the time and in very good health. Good weight, diet, exercise, cholesterol numbers, etc. ED was not an issue for me. But it is important to note that my erections were generally not of the same stiffness quality I recalled from years earlier. I ascribe that to the natural aging process. The January ‘accident’ happened when my erection was not completely hard which allowed the severe traumatic bending that occurred. Not to belabor the ED issue because Peyronie’s disease is the topic, but I do caution guys about intercourse when their erections are less than completely hard. There are potential risks that one should be aware of and some caution is justified. A side note – I’ve come to appreciate occasional use of Cialis to stiffen erections in preparation for intercourse to minimize the risk of another possible unintentional bending event – particularly given the increased vulnerability from the penis curvature Peyronie’s causes.
The Advent of Peyronie’s Disease
In April, about 4 months after the bending incident, I realized that I had been thinking for some time about a decrease in the pleasure sensation and it seemed like there was a hint of discomfort in my penis when in an erect state. Was this more of the natural aging process I asked? When I felt a small lump on top of the penis in June and started to visually see some curvature I knew something was wrong.
What to Do?
I wrote everything down and emailed it to my primary care physician who immediately recognized the condition and referred me to a well-respected urologist in New York City. His Peyronie’s disease diagnosis took about thirty seconds. He said there was no cure and prescribed Cialis ‘to keep the inflammation down’ and vitamin E ‘to control the plaque buildup.’ The whole process was less than five minutes. I recall saying to myself, “you just told me I have an incurable disease and that’s it – and you’re the expert?!”
Anyone with Peyronie’s disease can appreciate the disconcerting state of mind and emotions that surround the diagnosis and actual experience. Instinctively I immediately wanted to know all I could about Peyronie’s disease and how I could get it taken care of quickly. Surely there was a solution to be found. A quick self-education process using the Internet – which I definitely recommend – provided an excellent overview and history of Peyronie’s disease as well as the ability to discuss the condition in a meaningful way.
Being pro-active by nature, doing nothing made absolutely no sense at all to me. I decided to buy alternative treatment products online from a self-proclaimed Peyronie’s disease ‘expert physician’ and hoped that it was a possible fix that ‘the mainstream medical establishment’ did not want to discuss or acknowledge for whatever reasons. Whether alternative measures have any value or not is a separate matter entirely. Doing something felt good. And not being satisfied with the first medical evaluation, I let my primary care physician in New York know that the office visit with the ‘top urologist’ was less than helpful and at best actually discouraging.
That led to a referral to San Diego Sexual Medicine and Dr. Irwin Goldstein. His work was highly recommended but he was in San Diego and I was in New York. However, it was possible to arrange a free telephone consultation. I did that and within thirty days was scheduled to begin intralesional interferon injections into the Peyronie’s plague buildup.
The Treatment
The first visit to San Diego Sexual Medicine included an unrushed discussion of the full spectrum of physical and psychological issues at play. My wife was present and participated. I believe the initial open discussion with Dr. Goldstein is ultimately a healthy process. The natural tension surrounding Peyronie’s disease can be managed with a clear understanding about what is going on, what can and cannot be done, and honesty about the fact that it changes behavior for both partners. Ideally, acceptance of the situation is a reasonably successful outcome – as acceptance is in so many other areas of our lives. It is not hopeless resignation!
Receiving injections of anything into your penis sounds painful but it is actually a relatively painless procedure – as performed by Dr. Goldstein. It is a medical procedure and technique that I’m certain is not equal amongst doctors – do your homework.
I’ll omit description of the step-by-step clinical details other than to say that each treatment takes about an hour from arrival to departure. There are recommended treatment plans but I learned that there is a lot of flexibility to fit personal schedules.
My first series of treatments ran from the beginning of August to early November 2009 – about 5-6 visits as I recall. Interferon is apparently harmless but it can make you feel somewhat ‘fluish’ for a day after treatment, depending on the dosage and personal tolerance levels. I had no reaction at all to the first injections. So being a pro-active guy and wanting the problem fixed now, I requested higher dosages and discovered how wicked sick interferon can make you feel. It’s not necessary to suffer. Finding the right dose for you is quick by trial and error.
The degree of curvature in my penis at the outset in June was relatively small in comparison to others with Peyronie’s disease as I came to understand. But there was an obvious loss of pleasure sensation and pain associated with the Peyronie’s plaque. Intercourse and sex in general was not particularly appealing because of it.
In conjunction with the treatments, the curvature profile did change slightly for the better which is a clear indication that the interferon injections modified the plaque causing the problem.
It’s difficult to say if the interferon injections halted the buildup of plaque or managed the amount while the body was still making it. I can say that much of the pain was mitigated and is now more akin to mild discomfort at times. Unfortunately, the loss of much pleasure sensation has not changed. Perhaps that is a result of an unwanted affect on the nerve bundle or perhaps it’s in my head. More to work on I suppose….getting old is fun!
The feel of the hard plaque becomes familiar to you because you begin to check it daily. Around March 2010 I sensed that it may have grown somewhat since the last treatment in November 2009. Dr. Goldstein and I discussed a second series of treatments which I began and completed in June 2010, approximately one year from the first appearance of Peyronie’s disease.
Today (August 2010) I believe the pro-active approach I took to dealing with Peyronie’s disease was the right one. Was it a complete cure? No. Did it help at all? I believe so. Would I recommend doing the same? Yes – but each case is unique and only you can decide. If I have advice to offer it would be to avoid denial and do not procrastinate. Regret about “what might have been” is an unnecessary component to add to the already crowded mix of thoughts and feelings.
It’s impossible to say how bad or bent things could have gotten or how fast that could have occurred had treatment not been engaged at the earliest possible time. We’ll never know for certain. I can say though that I have a sense of ‘peace of mind’ as a result of the commitment to learn about Peyronie’s disease and the decision to make – what I believed was – a best effort to do what I could to address it.
FYI – Dr. Goldstein is one of a select group of physicians in a trial program for a breakthrough treatment for Peyronie’s disease. So there is hope for new and improved treatment on the horizon.
One more side note: Dr. Goldstein and the San Diego Sexual Medicine staff are professional and wonderful. I’ll guess that treating Peyronie’s disease is tough medicine to practice and they do it very well in my opinion. Equally important is your primary care physician. Talk to them or write it down. Silence is not an option! A good one will know you well and ought to be your trusted conduit to the ‘specialist care’ that may be needed from time to time.