My endo fell out of the chair when I told him that my penis curved to the left and veins emerged…overnight!!!
IMO, low T is a victim of something else going on neurologically.
Yea, it is so dramatic it’s hard to believe its possible. I actually think it is almost a medical emergency, but we don’t know what to do to treat it
I also think it may be that there may not be a unified theory here – something that explains all of the various symptoms we all get. For instance, I developed disgusting belly/hip fat within about 6 months of starting the drug. So it had altered my chemistry and was clearly affecting me. But my sex drive was fine in this period. Similarly, over the next six months, I started having all sorts of issues with sweating ridiculous amounts and weird temperature sensitivity stuff. But again, totally normal sex drive. Then I had the break-up and that’s when the sex drive kicked out. Then I stopped using Propecia a month later, and new things happened – the urinary issues, the vinegar sweat. And then when I took T in 11/12, it restored my sex drive right away (but didn’t last) and has had a much more sustained, positive impact on the urinary issues. But from what I can tell, it’s done nothing for the fat deposits. So maybe there’s a solution out there that will, say, get my libido back and leave me to deal with vinegar sweat and belly fat. I could live with that…
Recentquitter- do you feel your libido, zest for life, sexual problems are slowly slowly getting better? I have huge ups and then very lows. Like right now I am in an upswing, I cant stop checking out girls, in fact I couldnt sleep last night I was so horny and that has not happen to me in 14 months since I quit the drug.
I do have ups and downs, but I wouldn’t say the swings are huge. Like for the past few weeks, I’ve had more difficulty getting a firm erection and have generally felt less libido. It may be due to some some anti-anxiety pills I’ve been taking – I don’t know. But even when I’m in a better place sexually, it’s really not like it was before. I can remember just over a year ago what it would be like to sit in a cafe and just get instinctively excited/aroused by seeing someone attractive. I wasn’t even seeking it out. It would just happen naturally. And on some days, I;d feel so horny that I couldn’t wait to get back home and masturbate. Sorry to be graphic. But that was a typical feeling for me for years. And except for parts of a 3-week period last November (and a random 3-4 day period in, like, February) when I first had the T injection, I don’t feel anything like that anymore. At best I can get fairly hard looking at porn without manual assistance. But I have to make myself look at porn usually, and the erection will weaken easily. Nothing like before, when I would just have these urges. I can recognize what I’m attracted to, what would normally make me aroused, and I can appreciate it – but that surge of energy/arousal/excitement/imagination that used to come with attraction has just been taken away from me.
As I think about it all this week, I’m focusing more on the fact that I lost my libido when I went through that break-up in May '12. It literally happened as I was going through the most traumatic event in my life. So I’m wondering if maybe there’s something in my brain that basically shut down by sex drive in response to that flood of anxiety – something that (maybe) controls the testosterone receptors and deactivates them. This might explain why I have so much testosterone in me now, but it doesn’t seem to be doing anything. And maybe it would explain why it initially did have an effect when I had the first injection back in November. I remember then that at first I felt no sexual surge, but that after a day or two I realized my urinary symptoms were clearing up. I can’t tell you what a relief that was – just the simple fact that I didn’t have to walk around 24/7 with an aching need to pass urine. It made me so happy, and within a few hours, I felt the surge of my sex drive coming back on line. And that made me 1000x happier – I remember that night, back in November, starting to make all sorts of plans and goals for my life that I had been putting off since entering Propecia hell. But then the libido went away…and came back…and went away – it went on like that for a few weeks, then just faded out. I dunno – maybe my brain is shutting down my receptors somehow.
So an update: I’m scheduled for surgery tomorrow morning. (It’s 530pm where I am now.) It’s an elective cosmetic procedure aimed at getting rid of all of that fat that has collected around my belly/waist/hips and (more recently) pectoral/under-the-shoulder area.
This is partly a long-standing issue. I had a period in college where I put on a lot of weight fast, then took it off, and it left with me with some excess fat around the belly. I was embarrassed by it, but in hindsight it was nothing like what’s happened since I started taking Propecia in 3/11. I didn’t make the connection for a long time, but w/in a few months of starting the drug, I noticed I was a lot more bloated around the belly. Diet and exercise weren’t issues. I couldn’t figure it out. Propecia never crossed my mind. Then I quit the drug in 6/12 – and within a few weeks, I felt my body getting bigger in the chest. I couldn’t pinpoint where. But I had been outfitted for new clothes just before I quit the drug, and by the end of the summer, all of those new shirts and jackets were really tight in the chest/shoulders. That probably has only gotten worse since then. It’s shocking when I take out a t-shit that used to be big on me 2 years ago and try to wear it now. It’s so tight. I don’t actually wear it in public – just keep it to as a gauge of how my body has changed/fat has redistributed.
There are other issues. I don’t get hard spontaneously. My libido is limited. I’ve always been a stressful person, but I really don’t handle stress/anxiety well since I’ve been on this drug. I sleep terribly. The slightest among of anxiety will make my chest so tense and I’ll end up staying up all night. I don’t sweat like I used to. My body odor – woah, since quitting in 6/12, it’s been rancid. I get whiffs of it sometimes. What happened??? I saw Dr. Alan Jacobs and tried a number of approaches w/ him – all documented here. Ultimately, T injections provided one small, miraculous wave or normalcy, now just over a year ago – a fleeting moment when I thought I;d escaped this prison. But since then, I walk around w/ a penis that doesn’t get hard without a lot of effort, that when hard is an inch smaller than it used to be (used to tuck morning erections into my waistband while walking to the bathroom; now it won’t reach, and when I do get a morning erection, it vanishes instantly upon waking).
I have gone back and forth about spending time on this site. I’ve visited and contributed in spurts. It’s depressed me and contributed to a feeling of helplessness and despair sometimes. More recently, it’s been a source of some hope – the story from CDNuts and a few others reporting success with similar regimens, and also a thready suggesting that progesterone could be very helpful too. Maybe I’m imagining it, but it seems like lately there’s been an uptick in encouraging personal stories on here – people actually getting results. And there does seem to be a lot of common ground in what they report doing – focus on diet (Paleo-ish), no booze, no caffeine, no processed stuff, focus on stress management and getting real sleep. Maybe fasting. Maybe adding in some supplements. Heavy lifting and sprinting (I’ve always been more of a distance runner but have been experimenting with sprinting lately – completely different experience). Maybe progesterone. I do feel there’s some room for hope here, and for me (and others) to use these stories as building blocks for creating healthy lifestyles that will improve our symptoms. As I type this, I just finished my dinner of turkey, asparagus, broccoli and mushrooms, with water. Earlier I had a raw green drink. I never ate like this before. I haven’t fully committed yet. It’s hard. I’m single, I’m in NYC. My friend invited me out to watch college football yesterday. We were at a bar. I drank with everyone else. I got pizza slices on my way home. I feel like I have to just give this up completely, go all in on a healthy lifestyle. But I’m scared too. It could be lonely. I have to worry about mental health too.
The surgery is part of this rough plan I’ve put together. Living with this body, trying to squeeze into clothes that use to be baggy, is a constant, miserable reminder of what this drug did to me. I feel disgusting. I also worry that the fat that’s collected is a haven for estrogen – estrogen that only worsens my symptoms, that threatens to block progress I might otherwise make if I embrace this healthy lifestyle. So I want to have the surgery, to get rid of all that fat. To get a body that I feel OK about. To then commit myself, with a body I feel good about, to getting fully healthy.
This is major surgery. I’m scared. I’ve told basically no one. I see a psychologist and she knows, and I told one friend a very broad version of it. (I’m required to have someone pick me up after it’s over, so I had to tell someone.) But my family has no idea, friends, coworkers – no one really knows what I’ve been going through and what I’m about to put myself through. I feel very alone right now. Very vulnerable. It really hit me last night, and I didn’t sleep. I’m scared of the anesthesia, of not waking up. I’m intimidated by the recovery – this is going to be long, and slow, and painful, especially the first week. My work life is insane, and not slowing down. I’m off till next Wednesday, but I already know it’s going to be very hard to throw myself back in then, just 9 days after surgery like this. But I have no choice. I feel like I’m in such a bad place, that my body is only getting worse, that estrogen is only accumulating in my chest and other fat pockets, only making every other problem I have that much worse. I can feel estrogen-y now. My nipples feel like tingly/electric. This happens a lot now. The hair is disappearing from my legs – the lower parts are almost completely bare now, like I’m an 8-year-old kid. I feel like something could go wrong with the surgery…but wow, look at what has gone wrong. Look at what my life is now. Look at how long it’s been this way. I’m 34 and I’ve spent the last year-and-half as more or less a eunuch. I cry all of the time. It’s just horrible. You’re on this site, you know what I mean.
So I’m scared now, unsure if I should do this, but also aware that I’ll probably never be 100% sure if I should do something like this. I’ve looked through the archives and can’t seem to find anyone else who’s tried something like this. I have no illusions about this fixing everything. I just see it as a way of starting over…with a long and very uncertain process ahead of me. So that’s my deal right now. If anyone happens to be around, would be cool to hear a response tonight, even if it’s just to say “I know how you feel.” Like I said, I’m feeling extra alone right now. No one should go into surgery like this all by themselves. I can see that. But I wouldn’t even know where to begin with family and friends. I’m the guy who’s always told them about the latest medical problem I have – I’ve always panicked, always self-diagnosed. Of course I’d be one of those rare guys who thinks he has all of these bizarre Propecia side effects. I don’t want to worry my parents either. I don’t want to drag them into this. I’m 34 and this is where life has brought me. Its a nightmare I couldn’t have ever imagined.
I’m probably going to get gyno surgery done within the next few months. That would include lypo on the pectoral area where a lot of fat is stored. After you’ve had gyno for a while it’s permanent from what I’ve researched and been told so might as well get rid of it, no matter what happens with treating PFS from here on. As for the rest of the body, good luck, personally I feel this can be reversed to a degree with fasting/calorie control and exercise.
That’s the message I’m taking from CDNuts and some other recent posters. Have you experienced improvements with that approach?
I’ve lost a lot of weight and could lose a lot more if I wanted but am keeping a few extra pounds on prior to fasting.
are you not afraid that after the surgery you’ll just gain the fat back? i have pretty bad gyne which is getting toward the point where it will start to droop, and have thought about surgery in the future but it all seems kind of pointless unless you are “cured” as i assume the fat/breast tissue will just continue to be stored there?
That’s what I’ve thought as well and can’t seem to get a definitive answer. Normally it wouldn’t be a problem and I’m told it would be a permanent fix but obviously we are in a unique position in probably not being able to treat the underlying imbalance. I suppose you could just be ultra strict with your diet and hope for the best, worst case scenario get the surgery again later on. 
Can’t be bothered facing another summer with it.
Well, from what I understand, the lip would remove fat cells, which would make it improbable that the fat would grow back there absent a significant weight gain. But maybe it would anyway, or maybe it would just redistribute somewhere else…and maybe that would be good, because I don’t seem to carry fat in the “normal” areas where I used to carry them. In other words, my weight now is the same as before, but my body looks very different. So maybe buy getting rid of the fat cells, it would force that fat back to where it should be. I dunno.
But fwiw, this was a very emotional weekend for me. Trying to carry this alone was not smart. As the surgery date approached, I felt more and more alone, scared and sad. I finally broke down and talked to some family tonight about it – told them everything I’ve been dealing with. They, not surprisingly, start from the assumption that (as usual) this must be anxiety/panic-prone me exaggerating symptoms, making something big out of something little, and diagnosing myself with some worst-case thing I don’t have. I’ve done all of that before, many times. So I get their skepticism. But we talked for a long time. I told them I need them to hear me and to believe me — how persistent this has been, how relentless, how specific. Anyway, I’m glad I told them, it calmed me down and made me realize how insane it was to try to go through major surgery like this on my own. So I canceled it. I’m going to take a breath and make a plan here – a commitment to the kind of full, healthy lifestyle that has delivered results for some here. For the moment, I feel less stressed, just having shared ALL of this with some people. Maybe that will carry over and help me calm down longer term, just having some other people there to go through this with. Anyway, that’s the latest!
Recentquitter- you stopped the drug In June of 2012, unfortunately it takes more time than that to see improvements, i wouldn’t get the surgery yet
My handle says RecentQuitter, but that’s no longer true. I quit in June 2012, and it’s now February 2014. It hits me harder and harder with every passing day, week, month and year just how relentless and persistent this has been. This board has in a way been a source of hope for me. Reading the recovery from CDNuts was inspiring and gave me much to think about; reading others who are mimicking him and finding no improvement eats at my optimism. I’ve come here a lot in the last few months to follow 3 threads: (1) CDNuts; (2) The progesterone one; and (3) the methylation stuff. I don’t have the same molecular level grasp of all of this as some other members do. I’ve looked for overlap between success stories. I’ve loaded up on countless supplements, vitamins, t-boosters, scooping them up instantly when I’d read them mentioned in an encouraging post.
There are some overlaps int he success stories: Positive attitude – really believing in your program, committing to it. I don’t know if I’m capable of this level of positivity and confidence. I’m a doubter by nature. But I know it’s something I need to work toward, somehow. Eating healthy – some kind of paleo-ish diet pops up in a lot of the recovery stories. I’ve been pretty good with this the last few months – more steamed veggies and fish than I’ve ever had before, drinking a lot of raw juice. Unfortunately, this hasn’t even given me a hint of progress. If only this gave me a couple spontaneous erections, or a sudden, momentary surge in libido – that would be all the positive feedback I’d need to double-down and go after this program even harder. I’ve been sprinting. I’ve been lifting. I’m not claiming I’m on the CDNuts program 100%. I haven’t fasted. I don’t know how I would in the job I have now. Just switching to this paleo diet has had people at work telling me I look skeletal. (Probably because as a consequence of propecia, fat collects in a feminine way on my body – my upper chest, arms, belly, waist…not where it used to collect. So losing any weight makes my face look gaunt.) I’ve tried various vitamin combos, but never feel anything. I did 2 weeks of progesterone. Dear god, the burning under my pecs was relentless. Was so happy to get off that. Needless to say, no improvement while on it, no rebound effect when I stopped. Just steady.
I tried TRT way back, in 11/12 – when I saw Dr. Jacobs. First shot worked – kind of. For two weeks, my libido was back on about 50% of the time. There was I day I thought I had escaped this hell. It was about as happy as I’d ever felt. I made a list of things I wanted to do now that I had my life back, of people I wanted to reconnect with after keeping them at bay the previous 4 months. But then it wore off, never worked again, and I’ve been off it since August.
Many times, I do log in here genuinely looking for hope – for an encouraging story, for someone who’s stumbled on something that works. But honestly, most of the time, I leave here depressed overwhelmed by the debunked theories, failed treatments, despairing voices and shattered lives that are cataloged here. I’ve contributed my share of this – I’ve had some really low moments where I’ve just vented on here.
My sex drive seemed to really bottom out in January, just as I was getting serious about the Paleo/exercise stuff. That was very hard to take. I’d been seeing a therapist for two years and she grew so alarmed that she sent me to a psychiatrist – she felt I needed to be on medicine (Wellbutrin) because I had reached the point where suicide was a serious concern. I’ve been on it for a few weeks. My mood seems the same; no better, no worse.
I don’t know what happened to me exactly. My experience is unique because I can trace the loss of my libido and spontaneous erections to a specific event while on Propecia – a break-up in May '12. I’d already (in hindsight) been experiencing Proepecia side effects (weight redistribution, sweating patterns, temperature sensitivity, facial flushing), but when the relationship ended, I had what amounted to a nervous breakdown. I cried uncontrollably, didn’t sleep for two days. I couldn’t calm down. About a week into this, I realized I hadn’t had any desire to masturbate since it had happened. And I know that sexually, things had been normal right up to the break-up. So I chalked it up to the stress of the break-up. But I couldn’t calm down for weeks. Sleep was becoming impossible. I’d walk around all day exhausted, but then struggle to get even 4 hours of sleep. I’d wake up wired. So I went to a sleep specialist, who was horrified to learn I was on Propecia, at which point I quit and experienced a number of new symptoms (fat growing suddenly on my upper chest, arms – very feminine patters; sweating changes; this awful constant-need-to-pee thing that, thankfully, seems mostly gone now. The TRT actually seemed to address that.)
What I now believe happened is this: I’ve always been a very nervous/anxious type. The guy who would feel some symptom, research it on the internet and become convinced he had cancer, then drive his friends and family nuts telling them about it until finally going to a doctor and finding out he was fine. That was always me. That’s my personality. And I think that wiring in my brain made me a perfect mark for Propecia. I suspect it changes our brain chemistry in a way that makes us much less capable of dealing with stress – and so when I had that break-up in May '12, instead of registering as a 5 on a scale of 1-10, it became, like, an 11 for me. And that level of stress just broke me sexually and my inability to calm down and sleep in the next 5 weeks just broke the rest of my body. Then when I quit in 6/12, I got whatever new batch of symptoms came from withdrawing the drug.
Anyway, that’s what I think happened. And I don’t think I’m going to stumble on the cure here. There are some valuable posts/diaries on here that have given me a lot to think about. And I feel the fear, pain and longing that so many of you express. When you’re in your darkest moments, just know you’re not the one one out there who’s been hit with this, that there are others fighting the same fight and dealing with what you’re dealing with. And there are, although very few, some serious medical people looking into this. I don’t hold out much hope that medical science will cure this or even understand this anytime soon, but I’d love to be proven wrong.
But anyway…I plan to make this my farewell post, at least for now. I need to just try to live a healthy life on my own, work on my attitude, try to create and buy into a program that fits me, attack it 100%, and just try to get into a good, self-reinforcing cycle. Checking this site has become too much of a habit to help that process. If something happens to click and I have good news to report, rest assured I’ll be back to let you know. And in the meantime, I hope all of you find the path to health that works for you.
hey, i find your story very interesting, what happened to me was similar:
I stopped propecia due to side effects. I had gyno and looking back I remember forgetting things,being depressed and anxious…
One year later I had 3 days when my neighbour didnt let me sleep in the morning after programming for a project for school until 6am…he woke me up at 8 am EVERY FUCKING DAY of those 3 days… I started getting nervous and associated bedtime and bed with insomnia, which then turned into fear. I was afraid of goign to sleep…
I never recovered fully and am searching for answers…what happened those 3 days that changed my sleep so much, or what happened the months/years before that made me reach a point when 3 days of stress are enough to make me loose my sleep forever…
good luck
when ım on the drug, ı have lıttle sıde effect, some testıcular paın but that was all. Then i saw my ex gırlfrıend wıth another guy. That day honestly ı crıed a lot and, that nıght my penıs pained like a hell. I looked my penıs that moment. A black veın appeared and penıs begun to shrınk. I dıdnt understand what happened to me. Next day ı looked my fıngers, ıt looks skeleton. And another day my face wasted. Everythıngs happened ın 2-3 days. lıke a horror movıe. I dont lıe ı swear. I thınk ı was crashed by thıs fuckıng pılls and THAT GIRL. Im sure.
This is my first post here in four years. Looking around, I find myself flooded with memories and emotions from a very dark period in my life. I recognize some of the names from before. I’ve found old threads that I participated in, poured my heart into, checked for updates all day and night. I see new threads here that remind me of the old ones that used to occupy my every waking moment. Also, I like the redesign.
I wish I was coming back with a triumphant story, and with answers for everyone. I’m not, although I do think you may find some hope in what I’ve been through. The reason I’ve come back, though, is the same reason I came here in the first place. My situation has taken an unexpectedly nasty turn, one that has both puzzled and demoralized me. Once again, I find myself preoccupied with trying to make sense of what’s happening to me, growing despondent with the seemingly unsolvable nature of it, and, well, here I am again.
I’ll get to what’s happening with me now, but let me start with the good part. I was here regularly from 2012 to 2015 and I was an absolute wreck. Go read through my old posts if you’re curious. Some of them were hysterical, others just desperate. Reading through some of them now, I can feel again just how rock bottom I was, and how bleak everything felt. I was willing to try anything to beat this condition because I felt like I had nothing left to lose.
I had the usual sexual effects from Propecia, a range of other symptoms, and – what really depressed me, and developed over time – major changes to my body. Basically, it ended up just wanting to store fat, and in the worst places. My abdominal area got it while I was on the drug. It was weird, but I didn’t think much of it at the time and the rest of my body was still very normal. But then it spread to my chest and the sides under my armpits and got very bad. (To this day, I don’t know if quitting Propecia triggered the spread of fat like this, or if it was just a coincidence that it began spreading across my chest sometime after I quit.)
And there seemed to be nothing I could do about it. My body was disgusting, old clothes didn’t fit anymore, and new ones made me feel incredibly self-conscious. I felt fat. I weighed myself one day about 2 1/2 years into this and realized I’d put on 25 pounds. Same diet, same exercise as before (I’d always been active), but now all of this fat. And no amount of gym work or diet adjustment and no supplement regimen did a damn thing for me. I was stuck with it.
Finally, in the summer of 2015, I saw a plastic surgeon, who performed liposuction on my abdomen and chest. I couldn’t believe I was doing it. I never thought I’d be someone getting plastic surgery. But that’s how desperate I was. It worked out pretty well. At first, it was amazing – my body looked like it had years before. I can’t explain how exciting this was, how vastly my mood changed. Even though I still had the sexual side effects, I felt like myself again. I didn’t look fat. I didn’t feel fat. Clothes fit again. Suddenly I had the energy to be social again. I wasn’t cured, but it really was amazing. That’s when I stopped coming to this board. I just wanted to get away from this place and all of the despair I associated with it.
What I discovered about liposuction is that, unfortunately, some fat will come back. Not in the places it was removed from, but it will find other areas to settle into it. After a few months, that started happening to me. But it wasn’t terrible. It didn’t get nearly as bad as before and – crucially – I figured out how to manage it. I learned that if I went on the 5-2 diet – two days of fasting per week, and five days of normal eating – I could keep most of the fat off and be around my old body weight. And the fasting wasn’t that bad. It ended up being a kind of fun challenge. I’d have to find a way to make it work two days each week, but then on the other days I’d really feel like I’d earned something. And I felt the benefits. My body looked normal to people. Clothes fit. It was fine. My mental state was good. I felt like I’d moved on with my life, and from this place.
I thought that would last for years to come, but then about three weeks ago, I suddenly started noticing that my shirts were very tight. At first, I thought I’d washed them too hot, or left them in the dryer too long. But it wasn’t just a few shirts; it was every shirt I tried to put on. Extremely tight in the upper body. Just holding my arm out a little caused the sleeve to retract all the way into my armpit. These were shirts that had fit fine days earlier. I was confused. I hadn’t changed my diet, was on no new medicines, had made no sudden lifestyle changes. I raised added a third fasting day, thinking maybe I’d just gotten a little lazy, and tightened my diet on the non-fasting days. And I upped my exercise. Zero improvement. It got worse in fact. Very quickly, I had to put a whole bunch of shirts that I’d worn with no problem for four years aside – they are unwearable now.
I realized this is what I had gone through years ago when my body started to change because of Propecia. It was a chilling thought. It happening again?! But why?! Everything seemed under control. It seemed stable. For a few years now, I’d kept my body weight and composition at a very steady level. And it’s not like I just changed the program up or something. It feels like there’s new fat coming in under the armpits. It’s not a place where I had liposuction. It feels like I may be getting it in a few other parts of my body as well. But again, why?
When this all happened years ago the first time around, the explanation was obvious. But now it’s a puzzle. It’s been more than seven years since I last took Propecia, four years since I had that plastic surgery, and about 3 1/2 years since I adopted this diet/lifestyle program. Why would it suddenly flare up like this again? I’m sitting here typing this having flashbacks. My shirt is very tight when I move my arms, the same shirt that fit just fine a month ago, even though I didn’t eat all day yesterday and had only a salad today, and even though I’ve been to the gym four times in the last week. (And no, I’m not putting on muscle, unfortunately.)
So that’s where I am. The good news is the last four years went better for me than I ever could have imagined when I was a regular on this board before. I hope there’s some encouragement in that for you all. And yes here I am, back after all this time, with some of the same questions as before, hoping I don’t lose control of my body all over again.
This is my first post here in four years. Looking around, I find myself flooded with memories and emotions from a very dark period in my life. I recognize some of the names from before. I’ve found old threads that I participated in, poured my heart into, checked for updates all day and night. I see new threads here that remind me of the old ones that used to occupy my every waking moment. Also, I like the redesign.
I wish I was coming back with a triumphant story, and with answers for everyone. I’m not, although I do think you may find some hope in what I’ve been through. The reason I’ve come back, though, is the same reason I came here in the first place. My situation has taken an unexpectedly nasty turn, one that has both puzzled and demoralized me. Once again, I find myself preoccupied with trying to make sense of what’s happening to me, growing despondent with the seemingly unsolvable nature of it, and, well, here I am again.
I’ll get to what’s happening with me now, but let me start with the good part. I was here regularly from 2012 to 2015 and I was an absolute wreck. Go read through my old posts if you’re curious. Some of them were hysterical, others just desperate. Reading through some of them now, I can feel again just how rock bottom I was, and how bleak everything felt. I was willing to try anything to beat this condition because I felt like I had nothing left to lose.
I had the usual sexual effects from Propecia, a range of other symptoms, and – what really depressed me – major changes to my body. Basically, it just wanted to store fat, and in the worst places. My abdominal area got it while I was on the drug. Then it spread to my chest and the sides under my armpits. And there seemed to be nothing I could do about it. My body was disgusting, old clothes didn’t fit anymore, and new ones made me feel incredibly self-conscious. I felt fat. I weighed myself one day about 2 1/2 years into this and realized I’d put on 25 pounds. Same diet, same exercise as before (I’d always been active), but now all of this fat. And no amount of gym work or diet adjustment and no supplement regimen did a damn thing for me. I was stuck with it.
Finally, in the summer of 2015, I saw a plastic surgeon, who performed liposuction on my abdomen and chest. I couldn’t believe I was doing it. I never thought I’d be someone getting plastic surgery. But that’s how desperate I was. It worked out pretty well. At first, it was amazing – my body looked like it had years before. I can’t explain how exciting this was, how vastly my mood changed. Even though I still had the sexual side effects, I felt like myself again. I didn’t look fat. I didn’t feel fat. Clothes fit again. Suddenly I had the energy to be social again. I wasn’t cured, but it really was amazing. That’s when I stopped coming to this board. I just wanted to get away from this place and all of the despair I associated with it.
What I discovered about liposuction is that, unfortunately, some fat will come back. Not in the places it was removed from, but it will find other areas to settle into it. After a few months, that started happening to me. But it wasn’t terrible. It didn’t get nearly as bad as before and – crucially – I figured out how to manage it. I learned that if I went on the 5-2 diet – two days of fasting per week, and five days of normal eating – I could keep most of the fat off and be around my old body weight. And the fasting wasn’t that bad. It ended up being a kind of fun challenge. I’d have to find a way to make it work two days each week, but then on the other days I’d really feel like I’d earned something. And I felt the benefits. My body looked normal to people. Clothes fit. It was fine. My mental state was good. I felt like I’d moved on with my life, and from this place.
I thought that would last for years to come, but then about three weeks ago, I suddenly started noticing that my shirts were very tight. At first, I thought I’d washed them too hot, or left them in the dryer too long. But it wasn’t just a few shirts; it was every shirt I tried to put on. Extremely tight in the upper body. Just holding my arm out a little caused the sleeve to retract all the way into my armpit. These were shirts that had fit fine days earlier. I was confused. I hadn’t changed my diet, was on no new medicines, had made no sudden lifestyle changes. I raised added a third fasting day, thinking maybe I’d just gotten a little lazy, and tightened my diet on the non-fasting days. And I upped my exercise. Zero improvement. It got worse in fact. Very quickly, I had to put a whole bunch of shirts that I’d worn with no problem for four years aside – they are unwearable now.
I realized this is what I had gone through years ago when my body started to change because of Propecia. It was a chilling thought. It happening again?! But why?! Everything seemed under control. It seemed stable. For a few years now, I’d kept my body weight and composition at a very steady level. And it’s not like I just changed the program up or something. It feels like there’s new fat coming in under the armpits. It’s not a place where I had liposuction. It feels like I may be getting it in a few other parts of my body as well. But again, why?
When this all happened years ago the first time around, the explanation was obvious. But now it’s a puzzle. It’s been more than seven years since I last took Propecia, four years since I had that plastic surgery, and about 3 1/2 years since I adopted this diet/lifestyle program. Why would it suddenly flare up like this again? I’m sitting here typing this having flashbacks. My shirt is very tight when I move my arms, the same shirt that fit just fine a month ago, even though I didn’t eat all day yesterday and had only a salad today, and even though I’ve been to the gym four times in the last week. (And no, I’m not putting on muscle, unfortunately.)
So that’s where I am. The good news is the last four years went better for me than I ever could have imagined when I was a regular on this board before. I hope there’s some encouragement in that for you all. And yes here I am, back after all this time, with some of the same questions as before, hoping I don’t lose control of my body all over again.
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Hello, @RecentQuitter, I think you’re the second person this week to come back with an inappropriate username!
Welcome back, thanks for updating us. I’m sure some people will have questions for you. I’m sorry to hear about your recent problems, it sounds crazy that a fasting schedule like that still leaves you storing fat, especially all of a sudden. I know you said you hadn’t changed your schedule so if your schedule hasn’t changed, do you feel you have? Do you feel less energetic? If there’s the same number of calories going in as before, are you somehow (even with increased gym work) not burning them off elsewhere?
While you’ve been away we started a couple of projects one of which you can read about here: https://www.propeciahelp.com/post-drug-syndrome-survey-launch/
It’s very, very important that everyone here with side effects lasting more than 3 months takes the survey. Please do so. Click the little bar chart at the top of the screen so you can fill it out. It will save your progress so you need not fill it out in one go. Expect to spend an hour on it. It is really important and is already delivering data that we have never seen. Did you get an email about it?
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thanks for coming back after all of this time. glad to hear of your progress, even if you have shortcomings still. I find myself appreciative of my obstacles now a days after I’m able to reflect at how bad I was. I know it doesn’t solve the problem but it puts it in perspective. I don’t have many recs for the fat as you seem to be potentially undereating, it sounds as if you may have hypothyroid issues. you should get this checked out, it would explain the energy issues and the unexplained weight.
would you say you are recovered in other areas of your overall health? what are your other lingering issues?