This is my first experience with an online forum so please bear with me and I'll try not to ramble on too long. That being said--I've a lot to get off my chest.
I'm a late middle-aged, Caucasian male. When I was 28 years old, I was diagnosed with high blood pressure, and was started on medication to help control that. At the time, I was slightly underweight, diet and exercise didn't seem to play a role in the development of the disorder and it was decided that was simply a part of my genetic makeup.
After about a decade of being on various medications, I began experiencing difficulties with achieving and keeping adequate erections, presumably due to the medications. The erections were soft and there a few instances where I suffered a few painful "pops" during intercourse, where the penis bent painfully and there was pain and swelling.
After some indecision, and tired of the nagging of my wife to get something done about it, I reluctantly decided to broach the subject with my primary care physician. Back then, most of the advice I could find said to start with one's PCP.
So, I scheduled a non-urgent appointment and mentally braced myself for a difficult conversation. When the day of the appointment arrived, I went to the doctor's office with mixed feelings of dread--but also of hope there might be some sort of easy fix. Maybe my meds could be adjusted, or reduced (this was before the little blue pill came into widespread use).
However, after the preliminary pleasantries were over after the doctor entered the exam room, when I mentioned the reason for the visit was the fact I was experiencing some "impotence," issues, his face flushed and he looked away and in a low tone of voice (as if he feared someone might overhear) he warily said "I don't treat those sorts of issues. You need to see a urologist."
I was mortified at his reaction and felt my own face flush with embarrassment at the apparent faux pas I had committed. He asked if there was anything else he could help me with, still without looking at me, and I said no. "So do you want me to give you a referral?" he asked. I shook my head no in response. I simply wanted to leave as quickly as possible, and it was only while I was paying for the co-pay at the front desk that I felt my reddened cheeks start cooling off a bit.
It was about this time an area of
plaque began forming in the top side of the penis, and when I could achieve an erection, there was a sharp curvature upwards, with dimpling on one side. I had also been using a vacuum device with a ring to help with erections, I stopped using that.
My wife became increasingly dissatisfied with our marriage and she began an affair with a co-worker and filed for divorce. I was in dire financial circumstances for several years; I rented rooms on a month-to-month basis, drove old cars and scraped by as best as I could as I was saddled with spousal maintenance support payments.
Fast-forward one decade. I had finally paid off my ex-wife in full and I bought a decent car and was beginning to recover financially. I was also looking around a little and was thinking about how nice it would be to have some companionship, but the issues with the penis held me back from getting too close to anyone.
I knew I mostly likely had peyronies disease (probably due to repeated injuries from using the vacuum device), and times had changed. I decided to once again seek treatment. I inquired of my current PCP if there was anyone he could refer me to. He calmly gave me a name and address of a urologist in Scottsdale.
I contacted the urologist's office; they were accepting new patients but I would need to wait several weeks for an appointment. I went ahead and got scheduled.
I arrived at the complex early, and after paying my specialist co-pay of $50, waited for what seemed an interminable period of time. I was finally led back to an examination room. After a while, the urologist came in, a fairly young man. He asked some general questions about my health and read over some of the paperwork I had filled out online prior to my visit. He asked for the reason for my visit that day (I had already given the reason for the visit to the person who scheduled the appointment and the reason was also on the paperwork).
I felt a twinge of annoyance but I politely answered that I was there because I had peyronies disease. He asked when I had been diagnosed? I replied there had not been an official diagnosis, but I was 100% from the symptoms what the situation was.
He conducted a brief examination at that point; he confirmed it was peyronies and noted there was a large area of
plaque. He also noted that I had dual hydroceles and the prostate was enlarged but there were no nodules. I told him annual PSA assessments were within normal range.
After I hauled my pants back up he told me he personally did not treat peyronies, but a partner in the practice--at a different location, did treat peyronies and he gave me that doctor's name. So--I left feeling I had wasted my time and money.
I went ahead and scheduled an appointment with the other urologist. I had to wait several weeks to get in, as their practice was very busy.
At last, my appointment arrived. The urologist came in and was chatty and pleasant. I felt a few stirrings of hope--he said we could address the erection issues quite easily with injections. He examined me briefly and said the area of
plaque was extensive and he recommended surgery to correct it.
But first--he wanted to address the hydroceles. And he insisted that had to be a separate surgery, because of the risk of infection. He sent me to a separate facility where an ultrasound was performed on the scrotum. The imaging results revealed large hydroceles had formed as the result of a vasectomy I had when I was 35. So we scheduled a date for the surgery.
In the meantime, he wanted to address the erection issues. He prescribed alprostadil and instructed me to get the prescription filled and then to return to his office with it.
Alprostadil is not covered by my employer's health insurance plan, so he sent me to a pharmacy over in Sun City (the west side of the Phoenix metropolitan area) where the medication was compounded and dispensed at a greatly reduced price (about $150). The pharmacy is some 30 miles from my home--as I arrived at home I had a call from the pharmacy--they had neglected to provide the syringes. So I drove out there again to retrieve them.
At my next appointment with the urologist, after giving me some preliminary instructions, he injected the alprostadil into the side of my penis with the lowest recommended dose. It stung a little, but there was no sensation after that. He told me to massage the medication into the penis, then left saying he would return in about 15 minutes.
I massaged the injection site and the surrounding area for several minutes, without noting any reaction. I eventually gave up, pulled up my pants and sat in the chair reading on my phone. The 15 minute period came and went, a half hour passed, forty-five minutes, an hour. I zipped up my pants and fastened my belt. A few minutes later, the urologist finally came in.
"Something came up," he said, "Any reaction?" he asked.
"No, none," I responded.
"Well, the dose needs to be higher," he said, "Try again tomorrow, with the next higher dosage amount. The goal is to achieve an erection, with the smallest amount possible."
I told him I would try it out, and left.
Over the course of the next several weeks, I tried various dosages of the alprostadil, to no avail. It became clear to me the alprostadil was not the answer.
Three days ahead of the scheduled surgery, I was contacted by the surgical facility. Because I have atrial fibrillation (AFib) they were requiring a release from my cardiologist for the surgery, and I had to discontinue the Xarelto I was taking. I called, and emailed the cardiologist's office several times--I could not get through to the cardiologist and no one from his office would contact the surgical center. The afternoon prior to the surgery, I finally admitted defeat and the surgery was cancelled.
I went back to the urologist's office several weeks later. I had decided that perhaps a course of injections with
Xiaflex was perhaps the answer--no cardiologist needed to be involved for that. But
Xiaflex was not covered under my insurance plan (in fact, no medications, no treatments for any sort of
erectile dysfunction are covered under the insurance plan).
However, I was told not to worry, as the manufacturer of
Xiaflex offered a special price reduction program! I filled out a questionnaire, and the urologist's office submitted the application on my behalf. About two months later I received a call from the urologist's office--my application had been approved. However, even with the rebates, each vial would cost me $3K out-of-pocket, plus the costs of administration. I estimated the recommended course of treatments would easily run into about the $25K range.
I immediately cancelled my application for the drug--it had not yet been shipped, and I made it clear to the person I was dealing with that I did not want the treatment, and I would not pay for the drug if it was mistakenly shipped as she repeatedly told me once the vials were shipped they could not be returned and there were no refunds.
So, that is where things stand now. My attempted surgery was for July of last year; I've not attempted to follow up. I've seen the cardiologist once since then--he said there were no records in my file of my attempts to contact him, nor were there any records of the surgical center trying to get in touch either. He could not explain what had happened. He asked what the surgery was for, and I told him it was to correct dual hydroceles, and that later when I was healed from that, I wanted to have surgery to correct the peyronies disease--he smirked a little at that and shook his head. I'm not sure I will be going back to him--in fact, while I'm typing this I've decided I'm not going to. There are plenty of cardiologists out there, and the AFib isn't that serious right now.
So--if you've stuck with this, and you've read this far--what do you think? Should I keep trying? If you happen to live in the Phoenix area, could you recommend a particular urologist? I've spent about $1K so far in co-pays, I'm willing to spend a bit more if I could find someone that would help. Thanks for allowing me vent.
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Topic: Introduction from Phoenix, Arizona. (Read 1259 times)
March 23, 2015, 12:25:55 AM