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Author Topic: 52 with P.D. since 1999, surgery on 7/26 2010 - UPDATE: January 14, 2011  (Read 3854 times)

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Brightdog

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Age: 52, but, I am assumed to be 15 years younger on the basis of both appearance and remarkable genes.

Age at onset: 40.

Very First Symptoms - a small nodule of scar tissue in the shaft.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -

The cause of my Peyronies Disease is definitely trauma. In 1986, when I was single, I went for treatment of a non-gonococcal infection. These were common in my youth because I had Reiter's Syndrome (now known as reactive arthritis). Any sexual activity seemed to trigger an infection - including protected activity (when it would be the latex dust or the lubricant that would touch it off). I went to the STD clinic for treatment because it was walk-in and easy. They didn't understand the Reiter's connection, and I was treated increasingly as if I were somehow sexually irresponsible. How often was I there? About once every 6 months - that's how frequent my sex life was.

On my last visit, the director of the clinic conducted the examination. After giving me a lecture, she jammed the swab up my penis with such force that it took several days for the pain to subside and the slight bleeding to stop. From that point on, I would occasionally experience bleeding with ejaculation.

In 1999 I was injured during sex with my spouse. There was a sickening pop, a searing pain, and then gushing blood. Over the course of a few days the pain and bleeding subsided, and my GP told me not to worry about it. In August of that year I felt the first lump of scar tissue. My doctor diagnosed Peyronies Disease and told me it would probably go away on its own. No therapies were prescribed and no information was given to me.

By 2004 I had a bottleneck formation about 3" from the base of my penis. It was only obvious during erections. I had lost a small amount of length, but because I had started with more than anybody really needs I didn't care. My sex life was good, and I had no Erectile Dysfunction.

By 2007 I had a bend of more than 45 degrees to the left, starting at the ring of the bottleneck. It was pretty much on a horizontal plane - no upward or downward bend. I went to my GP (a different one - I had too many serious issues with the previous GP, who I feel should have his license revoked for the safety of the patients) and he put me on Vitamin E and referred me to a urologist.

Then I had to wait. And wait. After 3 months I went back to my GP - and it turned out the referral had been done in the wrong format (by phone instead of by fax or something). The referral was made again. For several months I waited, during which the angle increased to 60 degrees and I subsequently stopped with the Vitamin E. I finally took a photo of my erection, printed it out, and dropped it off at the urologist's office. That got action where nothing else did. Time from original referral to being seen was something like 10 months, if I remember correctly. It was now September 2008.

The urologist, who operates out of a teaching hospital, did no tests. He palpated the flaccid penis, looked at the photo, and agreed with the diagnosis. He recommended Verapamil injections and sent me to get the liquid. I paid for 6 small vials which were to be given once a month over 6 months. The first injection, to the right (least affected) side was extremely painful. The second injection, a month later, was to the other side. It was less painful, possibly because the thick plaque tissue at that side is less sensitive. The third injection was also to the right side. Although there was no visible improvement in the angle, the bottleneck didn't seem as pinched. The fourth injection was also to the right side - December 2008. It caused haemorraghing. I bled for days and my penis turned black. I could not reach my urologist - he might have gone away (all I remember is that his office had no message machine, no office hours, and only physicians were supposed to fax him. E-mail was also not provided to patients. Shy of camping outside his office, there was no way to reach him).

By February 2009 the blackness had subsided and my curvature was now worse - more than 90 degrees in a sharp angle. Any attempt to straighten it hurt, and I stopped even trying to have intercourse. I managed to get an appointment with the urologist, who admitted the case was now beyond his ability. He referred me to a urologic surgeon.

Over the next few months my Peyronies Disease progressed rapidly, and by the end of July 2009 I had reached the 160 degree point. Curiously enough, I still had no Erectile Dysfunction - but any erection hurt. I was also beginning to experience complications with urination as the scar tissue was affecting the urethra. There was still no word from the surgeon's office. I was reduced again to sending a photo to my original urologist - and I got a call from his secretary to say there had been a mistake and they hadn't followed up on the referral. As annoying as it was, I knew there was no point seeing the surgeon until the Peyronies Disease was stable.

I saw the surgeon at the end of November 2009. The Peyronies Disease had been stable since July except for a slight tilting (really - how much worse could it get?). He ordered the ultrasound which ought to have been done at the outset. Test date was February 2010, with a follow-up booked with the surgeon in early March. The surgeon had said he wanted to do an injection test in his office at that time. It turned out I was also supposed to have an injection test at the February ultrasound - but it was not done. So near the end of February the surgeon's office cancelled my March appointment, saying they would have to rebook the test.

In May 2010 I had still heard nothing about the rebooked test. I called my surgeon's office, and his staff reamed me out: "It's not like you have cancer" "What makes you think YOU should have priority?" "Earliest I am booking now is November 2010" "Book it yourself!"

I called our provincial Health Authority. They said they could do nothing, because the surgeon is in private practice. They advised me to go back to my GP and be re-referred, i.e. start all over.

I called the hospital about the test, and they told me the problem was not that there was a waiting list. The problem was the opposite: they only bring in the technician when there are enough patients to justify a few days of tests. So contrary to what my surgeon's office told me, by pushing for the test to be done I was actually helping to get those patients seen sooner. They promised me they would have me in before the end of the month (May). But there was still the problem of seeing the surgeon, and his staff refusing to book me before November.

The unrelated stresses at this time included the following:
  • my spouse was trying to cope with a chronic illness that was seriously affecting her ability to work, and depression was so severe that she spent almost every evening lying on the couch facing the wall.
  • my mother-in-law had spent 8 months of 2009 in acute care in the hospital and in November 2009 we had closed her apartment and moved her to extended care, where she is bedridden and tube-fed. My wife and I are the only family members in town.
  • my father was diagnosed with Alzheimer's in November 2009 and my own parents had to close down their house and move into assisted living.
  • my main income source, contracts for a local education institution, was cut by 2/3. Another part-time contract was terminated early, and my second-largest income source is a 3-year contract which ends in August 2010.
  • a freak accident in August 2008 broke my dominant hand and I experience chronic pain.

So I went to my GP. I told him that with all the horrible things happening in my life, things over which I have no control, it seemed to me that in this one thing (getting treatment for my Peyronies Disease) I should be able to affect change. I have good coping skills, but how much can one person bear? I was on the verge of tears all the time. And having had mistake after mistake from the medicos over the history of my Peyronies Disease, I was making that my hill to die on.

My GP - bless him, I hope he stays in practice forever - calmly said he would be my advocate.

The very next day I got a call from the surgeon's office with my test date and an appointment to consult him.

The injection test hurt a lot. The technician had said the needle would hurt going in, and I told him my biggest fear was that it would continue to hurt, because erections hurt. "Well, we have to do the test to see if there is blood flow."

By this point I was pretty much loony. For years I have been pointing out that I seem to have lots of blood flow, and no Erectile Dysfunction. But they are so used to thinking anyone with this level of Peyronies Disease has to be experiencing Erectile Dysfunction that everything they say is about my "difficulty getting or maintaining an erection" and I could scream. Every appointment and every letter I sent, I made it clear that I was probably a good surgery candidate because I have never had Erectile Dysfunction despite the degree of curvature. I also had no other health complications, BP of 112/70, a heart rate between 56 and 60, and a BMI of 21. I am 52, but everyone assumes I am late 30s and a FIT late 30s.

He gave me the injection and I had 4 hours of pain for a test that only took 40 minutes. And it told him what I have been saying all along: lots of blood flow AND lots of very bad plaque.

In June 2010 I had the appointment with the surgeon. He wanted to know why it had taken so long for me to see him again. He then prepared to give me another injection test, and I asked him not to. He said he had to examine the tissue while I had an erection, and I said I would prefer to do that the old-fashioned way so I wouldn't be in pain for 4 hours. He was surprised that I could (does ANYONE read the files?) but he agreed. He gave me the minimum dosage to ensure I could hold the erection long enough for a 15 minute exam.

When I was ready, he came back and did a manual exam. It hurt, but not like the induced erection had. When he was done, and he had consulted my chart again, he calmly told me he didn't think I had any choice: I could not live like that. I would need the graft procedure and plication, and he recommended the FastSize therapy afterward - not for size (happy to lose some of that) but to encourage the scar tissue to form in a smoother fashion.

And the very next day his office called to tell me July 26th was my surgery date. I ordered the FastSize, which meant a certain amount of time on the phone trying to convince the charming doctor that a) I don't have Erectile Dysfunction, and b) I don't give two hoots about size. All I want is a penis that allows me to have a reasonable amount of intercourse without pain to me or my partner.

So I had the surgery last Monday. There were last-minute complications on the hospital's end with anesthesia, blood thinners (!), and sending me home to do daily dressings that required materials not available in drugstores or medical supply outlets. No pain, but very slow healing - which is unusual for me.

Where I am today, future plans - The day of this writing I am wondering whether or not the draining of this wound is normal - seems to be more discharge than I would have expected. My follow-up appointment isn't until September 8. I did not see the surgeon in the hospital - post-surgery examination was done by a resident and a visiting doctor from another country who is studying my surgeon's techniques. By September 8 we should have a good idea where things stand post-surgery. I really resent all the time and energy that has gone into getting treatment, even more so because I am not phallocentric and I don't much care what my penis is like as long as it works reasonably. My nude modelling/escort days are long over - the only people who give a hoot now are me and my wife, and we're easy to please.

__________________________________________________________________________
UPDATE August 16, 2010
The surgery site WAS infected, as I had expected. Changing the dressing was making me gag - it was like my body was rotting. The mess was soaking three layers of dressing and then right through my clothing. I consulted my info sheets that list the various possible complications, and the sheets say to call the surgeon's office. I called my surgeon on the 4th of August and got an answering service that said he was away until August 23 and patients should either go to their GP or the hospital. My GP also turned out to be on holidays. Another doctor in the clinic examined me, confirmed that there was an infection and extended my antibiotics.

On the 11th I went to the hospital because I was still having some discharge and bleeding. My surgeon's partner examined me and said everything was fine and that I should stop dressing the wound and taking the antibiotics. He said I could use some gauze to protect my clothes from the discharge and blood.

I am worried about what this all means for my recovery. I wish the surgeon had told me BEFORE the surgery that any post-op complications would have to be handled by someone else - then it wouldn't have come as a surprise when I was feeling stressed out and vulnerable.

Today I am having very little discharge, and it seems to be coming from two minorly infected sites that I am treating with antibiotic ointment. Yesterday I had two small areas that were bleeding, but they seem to have stopped overnight.


UPDATE September 8, 2010
Saw the surgeon today. He indicated that my infection issue was unusual. It also turns out that the blisters might have been a reaction to the medication in the vaseline-impregnated dressings. Since they contain an antibiotic and I am allergic to several antibiotics, that makes sense.

He is unhappy that I am not having erections (not nearly as unhappy as I am, I bet). So he has prescribed Levitra and he has given me some samples. I am to start the FastSize therapy right away.

I asked him about the vacuum pump therapy, and he was all for it. Don't ask me why he didn't mention it until now! So when I can afford one, I will probably go shopping.

I spoke candidly with him about my concerns vis-a-vis how I was treated - not the surgery itself, but the pre-surgery and post-op situations. He responded to my concerns and then asked me to put some fo the observations in writing for him.

He said the heparin I was given in the hospital should have had no effect on the bleeding of the surgical site. The problem with getting the dressings turned out to be a different problem: the vaseline-soaked gauze was applied in the OR, but was not intended to be part fo the post-op routine. Yet it was HIS residents who continued to change the dressings for 2 days using it - and the nurse who sent me home with a couple of days' supply. So my inability to get the gauze turned out to be a good thing, especially since I seemed to be having a reaction to it.

He apologized for not telling me he was going out of town. At first he said "We have a busy urology clinic here and we always make sure our patients are covered by colleagues in the clinic". I pointed out that I was not able to get through to the clinic - that the answering machine said to see my GP or go to the hospital. Then he said "It's not like I was leaving right after the surgery. Do I tell patients I'll be away a month from now?" I pointed out that it was the very next week, and that I hadn't seen him after the surgery at all. He apologized.

As for his staff - he wants that stuff in writing, in case it is a pattern.

My next appointment is in 2 months' time - November 8th. We will see what progress the Levitra and FastSize have made on the problem.


UPDATE October 10, 2010
A slight change in my measurements. I have lost one eight of an inch in flaccid length. LOL - I think it is probably a measurement issue. None of my other stats have changed after a month of therapy except that I AM able to have a very modest erection without drugs.

The actual stats: 4 5/8" girth flaccid and 5" erect; 4 3/8" length flaccid and 5 1/2" erect. Yep, still 2 1/2" less than I was before, but these are early days yet.

I have tried Levitra twice and hated the way it made me feel. The first time I didn't even manage an erection and I felt disconnected and woozy. The second time I got an erection - AND a two-day crashing headache.

Everything looks great until I have en erection - then I am acutely aware that I am sort of lumpy and a little crooked (not bent, just...uneven). But I am still not having any pain - and being able to have an erection without pain is a blessing after the past 2 years.

I have been doing the FastSize traction for a month now. There are many issues with it.
  • The Canadian order arrived with a booklet that used metric measurements for the pieces - but the measurements don't match the pieces supplied
  • The company is having some problems right now, so although I sent an e-mail to inquire about the above, 3 weeks later and I have yet to get my question answered.
  • The design is guaranteed to pinch. I did not notice at first because I had no sensation post-surgery, but some feeling is starting to come back - and with it comes the discomfort of this device.
  • Maybe I don't wear the right kind of clothing, but I find it is almost impossible to wear the FastSize under my clothes. Not because it is so obvious, but because the device doesn't stay extended. My clothes push on the end of it and the springs contract.
  • I had a false start with the FastSize - I started with the axis too extended for comfort (at least, that is how it seemed to me) and so I ended up going backward for a week. Now I am back where I started.

I have been doing the VED for two and a half weeks. I am being extremely cautious with it. I have no problem with seal, and I am being very careful not to overpump. For blood flow, I much prefer using the VED to using the Levitra.

UPDATE November 13, 2010
A positive change in my measurements - and quite significant for only 2 months of traction and less than 2 months of VED.

The actual stats: 5" girth flaccid (a gain of 3/8") and 5.5" girth erect (a gain of 1/2"); 5 1/8" length flaccid (a gain of 3/4") and 5 7/8" (actually, as of today it's 6") erect (A gain of 1/2"). Yep, still 2" less than I was before, but this is only after 2 months of therapy.

Well. Everybody said it would work.

I am combining FastSize traction (2 - 7 hours a day) with VED (3-cylinder protocol). This week I started on low dose Cialis for a 6-week course of therapy.

I am having erections. They are still not like what I used to have, but they are finally strong enough to be usable. I am still largely numb - and grateful for that, because the traction device is irritating. But there are some indications of feeling coming back.

UPDATE December 13, 2010
I knew November would be a setback. I have a ridiculous work schedule in November and could not wear the traction device for as many hours as I had previously - and some days not at all because I was working as many as 18 hours per day. I cannot wear it while driving, and there is very little privacy at my workplaces for taking the device on and off (very busy washrooms). I managed to break the handle of my VED, and I have been too insanely busy to fix it (I haven't been on the forum since my update last month either).

My stats are holding the same, though - with a slight increase in the erect length. And the quality of my erections has improved, possibly owing to the low dose Cialis treatment. Today is my first day of a more reasonable schedule, so I can go back to wearing the FastSize device. I should be able to fix the pump this week too.

I am now confident that I can resume sexual activity, with caution.

UPDATE January 14, 2011
I have ordered a new VED and it should arrive in a week or so. I tried fixing the previous pump - but I was halfway through the fix when a curious houseguest picked it up and broke it again. Sigh. I have been wearing the FastSize traction device some, getting back into the habit.

Current stats show a marginal increase in length and a decrease in girth - which I think is owing to having stopped the VED.

The actual stats: 4.5" girth flaccid (a setback) and 5.25" girth erect (a setback of 1/4"); 5" length flaccid (a setback of 1/8") and 6 1/8"  erect (A gain of 1/8").

UPDATE June 29, 2013


Still pain-free. Some return of scar tissue affecting the aesthetics but not the function! Had a misthrust injury in summer of 2012 which led to bad haemorrhaging and a strange illustration of the health care system.

My urologist had said I needed to contact him immediately if there was another injury. His office administrator, though, was not prepared to put m through on the phone - all she would do was give me an appointment 7 months down the road, even when I explained that it was an emergency and the doctor had told me to call.

I went to my GP's clinic. He was away, but his locum examined me and said he felt this was an emergency. He found out which hospital my urologist was doing surgery at and sent me to the Emergency Department there after leaving a message for the urologist. When I got to the hospital, the staff got very huffy and said I couldn't just walk in and expect to see a particular doctor. I explained that my GP had sent me. They still insisted I had to be seen by the on-call emerg staff.

While I was filling out the forms, one of the triage nurses said "Wait - what is your name again?" When I told her, she pointed at a sticky note on the desk that was a message from the urologist saying he was to be called when I arrived. They had misread "broken penis" as "broken pelvis" and they were expecting someone to arrive on a stretcher.

The doctor examined me, decided against immediate action. No sex for 6 weeks. Follow-up appointment...6 months.

I stopped regular use of the VED - too much work and too hard to manage in a complicated household. On no other therapies, but things seem both functional and stable.

Edited by Administrator for proper format


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