After 2.5 years of relative (very bad) stability with this, I’ve been undergoing some devastating changes in the last 3 weeks that have baffled me and every doctor I’ve talked to – until now. The good news is I now understand a big reason for my sexual dysfunction. The bad news is it doesn’t sound like there’s much I can do about it. And it’s getting worse.
What happened in the last 3 weeks: My ability to achieve and sustain an erection essentially crashed to 0%. This seemed to happen overnight, the night after Xmas, and I’ve been trying to figure it out. Basically, I had been getting morning erections since PFS onset 2.5 years ago, although they would always disappear immediately upon waking – as opposed to my pre-PFS years where every morning I’d wake up and pee through a raging hard-on. Still, I had some type of AM erection for the last 2.5 years most days. But on the morning of 12/27, I woke up with a completely shriveled (even more than my PFS norm) dick and not a hint of an AM erection. This then continued for the next several days. In this time, it was also suddenly impossible to get a hard-on through mental/physically stimulation. Again, this is different from my post-PFS norm. My libido has been low for 2.5 years, but I was able to get hard and jerk off. Sometimes I’d be really hard, sometimes not that hard at all, and never my old self … but I was ultimately functional.
But starting three weeks ago, I would lay there for 45 minutes using every trick I could think of and get at best 25% hard. I noticed as well that my dick, when partially erect, suddenly seemed even narrower than my PFS norm and more rigid in the shaft. Also, I have been waking up with the need to pee every 90 mins-2 hours or so during the night. This is something I have not experienced the last 2.5 years – except for the first month or so after quitting Propecia, when my worst current symptoms first appeared. On top of that, in it’s new, extra-shriveled state, I feel a very uncomfortable sensation as the base of my shaft, especially when sitting. I’d sort of describe it as a force pulling my dick back into my body. But it sometimes just hurts.
So that’s what has happened in the last 3 weeks. I had hoped at first it was some kind of stress reaction and that I’d go back to my PFS baseline quickly. That hasn’t happened. And I’ve tried to figure out what else could be doing something like this. I’ve also run it by doctors I’ve seen and they haven’t known what to say. But then, in searching for an explanation the other day, I found information about penile fibrosis. And it ht me: that’s exactly what this is.
And it turns out, a few months ago, when I saw Dr. Goldstein in CA, he diagnosed me with Peyronie’s. There was, he said, a plaque at the base of my shaft on the right side. It explained the loss of flexibility I had experienced during PFS and a weird symptom that had developed when I first quit the drug: my penis pointing off slightly to the left when erect. He told me this was common with Propecia patients and that finasteride had done it to me. Now, at the time, I didn’t think too much of this. This was during that 2.5 years of stability. I didn’t like that my dick was less elastic than it had been before, that it seemed shorter and that it pointed to the left when erect … but I also felt that none of this would be debilitating if I could just get my libido back. It was something that I felt I’d be fine living with if everything else was normal. So I didn’t give it much thought.
But when I began looking into penile fibrosis this week, I suddenly realized that what I’m experiencing now is related to this. And saw a doctor locally (I’m nowhere near Goldstein) who agreed that I seem to have more plaque causing further issues with my erectile function. He said he suspects, based on literature he’s seen and my history, a link to low T levels, and said that if I could normalize my T levels/function it might improve. Unfortunately, we’ve been adjusting my T levels for the past 2.5 years and my body just doesn’t seem to respond to it. So it doesn’t sound like there’s any solution to this dramatic worsening of my condition short of curing PFS.
Here’s what I think is most important, though. What I am going through right now is nearly identical to what I went through in the weeks after I quit Propecia in June 2012. I will always remember that time vividly. I had had some libido issues in my final month on the drug, and also had some other weird hormonal symptoms (sweating, some extra belly fat etc) while on it, but I’d never made the connection to Propecia until a doctor pointed it out in June '12. Once he did, I quit immediately, fearing that I’d ruined myself for life and praying that everything would quickly normalize. In hindsight, though, it was only when I quit that things truly went to hell for me. It was in those weeks that I began to wake up every hour or so during the night with a strong need to pee a relatively small amount. It was in those weeks that I suddenly noticed that my dick would point to the left when erect, and that even when fully erect, it wasn’t as long as it was before. It was in those weeks that I found myself feeling the need to pee every 15 minutes. It was maddening, but I struggled to describe it to urologists; I described a pain at the base of my shaft or urethra that seemed worse when sitting and that would temporarily ease when I peed, only to return within minutes, seemingly when any fluid returned to my bladder. It seemed like something weird was happening at the bladder neck, but after countless invasive tests, no one could figure anything out. Eventually, things settled down a little; I stopped waking all those times during the night to pee and the discomfort became less constant during the day. A T shot in 11/12 suddenly calmed the constant peeing thing down, and since then the peeing issue has been an irregular one for me – some days I deal with it, but most it’s manageable.
Anyway, that’s what the last 3 weeks have been like too. Suddenly waking constantly during the night to pee a small amount. Feeling that intense discomfort at the base of the shaft. The quality of my erections suddenly changing for the worst literally overnight. I’m needing to pee more during the day, with the accompanying discomfort that is relieved when I go (although it’s not as out of control as it was 2.5 years ago).
What I now realize is that quitting Propecia in June '12 somehow set in motion, within days, the development of Peyronie’s. All of that discomfort I suddenly felt and the tilting of my erection was Peyronie’s setting in. And then, I guess, it stabilized for the next 2.5 years. As I said, it left me with a shorter dick and erections would disappear quickly if I broke concentration, but I was functional. And now something else happened around Xmas to basically trigger this process all over again. Except now I have more plaque and thus far worse symptoms overall. I really am pretty close to function-less sexually. (Obviously, this has given me a new appreciation and longing for what had been my PFS norm, as miserable as it was.)
So what happened around Xmas to trigger this? I don’t know, but I have a few ideas. One is stress and anxiety. There’s a paper floating around based on a study in rats suggesting that stress can play a role in degenerative penile fibrosis. When I quit Propecia I was in an extremely exercised state emotionally. Panicking that I had ruined myself for life, fearing the worst, obsessed with it every minute of the day. On top of that, I had just a month earlier gone through a brutal break-up, and I was still reeling from that. Similarly, this December I pretty much reached my PFS low point. I was starting to give up, crying a lot, thinking very dark thoughts. Did I put myself back into a similar stress overload state and cause a second round of Peyronie’s?
Or maybe it’s hormonal. Maybe it was initially the hormonal effect of withdrawing Propecia from my system. And maybe now it’s related to the treatments I was trying for Propecia. In November and December, I went down a regrettable path out of desperation. I was using AI’s heavily and tried two different forms of testosterone that I hadn’t used before, propionate and suspension. Did this maybe kick off some kind of hormonal issue comparable to quitting Propecia? This is obviously something I’ll have the rest of my life to mull over.
But what I’m realizing now is that I never really had serious Propecia issues until I quit. When I was on it I was perspiring ridiculously easily, was extremely sensitive to warm and cold temperatures, and – at the very end – felt my libido plummet. But that libido loss has always come with an asterisk: it happened when I was dumped in May '12, the end of a long-term relationship that devastated me. I was crying for days and not sleeping. So I’ve always wondered if that was necessarily Propecia that caused my libido to drop back then, or more the overwhelming stress from that break-up. What I can say for sure now is that only when I quit the drug later – in June '12 – did my penis physically change. My issue was purely libido before that. But something about quitting caused sudden and devastating physical changes to me dick.
And it’s not just my dick. I remember noticing some extra fat around my abdomen while on Propecia. But again, it was only when I quit that all hell broke loose – within weeks, I was developing gynecomastia and my whole body began feminizing in terms of fat/weight distribution. In those weeks and months after quitting, my sweating at first all but disappeared, then returned at a reduced level and smelling like vinegar or cat piss (it seems to alternate between them – but it’s never just normal sweat or body odor anymore). Hair began falling off my lower legs, which are now at least half bald. The awful and baffling urinary stuff I described above suddenly began.
For a long time, I saw my Propecia issues as a continuum – they started while I was on it and continued when I went off. I no longer see it that way, though. Yes, I had issues while on it, and I obviously should never have taken it. BUT … besides that fateful decision to take the drug in the first place, the single biggest – and worst – thing I did in the last 4 years was to stop taking it. There’s no ignoring it. It was only when I quit that I developed truly devastating and life-wrecking issues. If you put me back in time to three years ago, I would have stayed on it. Not because I liked it or wanted to. But I can’t help but wonder if I would have been spared the impotence I now face, the humiliating changes to my body, and all of the other truly, truly terrible things that only began when I quit.