I’ve been on and off this forum for close to two years now. It’s scary. I get depressed, like everyone here, I’m sure. But at the same time, I want so badly to get over this. And I get so frustrated at the general lack of interest from the medical community and the glacial progress being made.
(Which is not to disparage the studies being done. So glad they’re taking place – it’s just that when you play out the timetable for figuring out any disease and coming up with a serious treatment for it, then add in how ours gets so much less attention and $$$ than things like cancer and Alzheimer’s and ALS … well, it can just feel like for my own life, I need to solve this myself and not wait for medicine to have an answer.) So I find myself spending more and more time playing back the tapes, trying to remember exactly how and when each aspect of this hit me, trying to come up with some kind of meaningful hypothesis and treatment. Here are the things I keep coming back to and wondering about. Curious if anyone has had similar experiences, or if any of this sparks any thoughts.
- WHY DID TESTOSTERONE WORK – AT FIRST? About five months after quitting I began taking T-injections. When I began, my bioavailable-T was very low, my estrogen seemed to be in normal range and my SHBG was high. It took about 2 days, but after the injection I felt my libido come rushing back. It really was amazing. Complete restoration of the connection between my brain and my dick. Just like before, mild sexual thoughts or even just romantic thoughts would get me hard. This flickered on and off for 2 weeks. At the time, I was encouraged. I figured my system was working out the kinks and permanent restoration was near. Instead, after the fourth or fifth time it flickered off it just stayed off. No subsequent T-injection had any effect on my libido – no matter how high we boosted it. (And yes, we were controlling for estrogen with an AI.)
So what was happening in my body that first time I took it? It’s one of the biggest sources of hope I have – that there was a time well into dealing with this that I got my sexual function back to normal. But why didn’t it last? Why could it never be replicated? Also interesting to me: A blood test taken when that first injection was working showed that my SHBG had fallen way down, into normal range. The next test – a few weeks after it stopped working – showed the level climbing back up near 40 (on a scale of 50). And the next test after that put it back around 48, which is where it has been in every other blood test I’ve taken since quitting propecia.
- WHY DID I LOSE MY LIBIDO AFTER A HIGH STRESS EPISODE? I can pinpoint the exact moment I lost my sex drive. It was in May '12, when I was dumped. It had been a serious, long-term relationship and I took it very badly. It happened late on a Friday night. I didn’t sleep that night. Slept maybe 2 hours the next night. I was crying. I was sad. I was frantic. In hindsight, I’d call it a panic attack. And for weeks after, I couldn’t get a good night’s sleep, was very emotional, etc. And here’s what I remember: Just before we broke up, I made myself stop jerking off for 2 days – because I was anticipating sex that Friday night (we weren’t living in the same city at that point). And when we broke up, int he midst of all that sadness, I remember thinking to myself that I would jerk off later and it would be intense – since it had been like 3 days. That was all instinct – that’s just how I was wired to think my whole life up until that point. And the next think I remember is that sometime the next week, I was sitting at home one day and realized that not only had I not jerked off since the break-up, I hadn’t even thought about it. I’d had no desire. My whole post-pubescent life until that point I would go crazy after a few days of not jerking off. But sudden;y I had just gone a week without even thinking about it. I was scared to realize it – but then I chalked it up to the stress of the break-up. Not Propecia. It was only about a month later, when I went to see a sleep specialist and he flipped out when I told him I was on Propecia, that I made the connection. That’s when I quit. I got none of the surge-and-crash phenomenon that others describe when I quit. Just basically a steady state – libido disappeared with the break-up and stayed turned off when I quit. No spontaneous erections. Retracted dick. I am convinced that in my case something about the intensity of that stress episode – again, I’d call it a panic attack – is key to what happened to me. The interaction of high stress with whatever Propecia did to my system caused me to lose my libido. I m convinced that if we had not broken up that night, I would not have lost my libido – at least not at that point.
- DID TRIBULUS-T-BOOSTERS WORK FOR ME? The only other positive experience I’ve had since the t-shots was last December, and it was much smaller in scale. But that’s when I purchased the natural t-boosting supplements that CDNuts recommended. And after a few days on my first cycle of them (different one each day), I noticed a definite increase in libido. Not as dramatic as with that first T shot, but I felt hornier and erections came much easier. This was on XMas eve and Xmas day. I remember driving home late on Xmas and getting hard as I fantasized. Stayed hard for like an hour on the way back. This is not normal for me post-propecia. I got home and jerked off – and it seemed like that wiped out the libido spike. I kept cycling the T-boosters but that increase in libido never came back. I stopped after about 3 cycles. Here’s the thing, though: I’ve been taking periodic blood tests, and just before I started the t-boosters, my estrogen was at a normal level. About a month after I stopped the t-boosters, I took another test – and for the first time since I quit Propecia, my estrogen was way up, over the limit. So is that why the t-boosters stopped working? Was it failing to control estrogen? I’ve since taken Aromasin and estrogen is back at normal range, but I haven’t taken the t-boosters again.
In particular, I’m interested in tribulus. There are several guys on here who say it outright cured them; others who’ve said it at least produced noticeable improvement. Tribulus was one of the t-boosters I was cycling. So I’m wondering if it might be a significant recovery tool – as long as estrogen is controlled. That’s why right now I’m spending this month trying to focus on my lifestyle (trying to get myself onto a truly healthy nutrition program – paleo-like diet, cut out booze, caffeine, etc.) and thinking about trying Tribulus (and maybe other natural t-boosters) next month, under the theory that I need to sort of prime my body for it. And I’ll try to control estrogen while taking it.
Anyway, these are the three things from my own experience that I keep thinking of. I’m assuming everyone has their own questions based on their own experiences. But just figured I’d see if this sparked any conversation…