I quit cold turkey/trying to figure out what's happening

Member Stories
#1

  1. Where are you from (country)? United States

  2. How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) Google search/propecia side effects

  3. What is your current age, height, weight? 32, 6’1, 175#

  4. Do you excercise regularly? If so, what type of excercise? Yes. Run, gym

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? salads/sandwiches/burgers/snacks

  6. Why did you take Finasteride (hair loss, BPH, other)? Fear of hair loss – thought it was a good preventive step

  7. For how long did you take Finasteride (weeks/months/years)? 15 months

  8. How old were you, and WHEN (date) did you start Finasteride? mid-March 2011, 31 years old

  9. How old were you when you quit, and WHEN (date) did you quit? June 20, 2012, 32 years old

  10. How did you quit (cold turkey or taper off)? Cold turkey

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? Propecia

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg/daily

  13. How long into your use of Finasteride did you notice the onset of side effects? Slight decrease in erections strength/sexual vigor in the months after I started taking, but nothing dramatic – it didn’t bother or worry me. Only in the last 2 months has it gotten noticably bad.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation? My sex drive went way down in the last two months – lack of morning rections and spontaneous erections during in the day, don’t find myself fantasizing like I used to, erection strength not that great. I was probably down to about 40-50% of what I used to be in the last 2 months, but since quitting I’ve lost my sex drive completely.

Put an X beside all that apply:

Sexual
[X] Loss of Libido / Sex Drive
[ X] Erectile Dysfunction
[ ] Complete Impotence
[X ] Loss of Morning Erections
[ X] Loss of Spontaneous Erections
[ X] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ X] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ X] Extreme Anxiety / Panic Attacks
[ X] Depression / Melancholy

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ X] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ X] Stomach Pains / Digestion Problems
[ X] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ X] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Nothing yet

  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?
    N/A

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

I’m trying to understand what’s hapening to me, and what, if any, role Propecia and Propeca withdrawal is playing it. I began taking 1 mg/daily in March 2011, 15 months ago. In hindsight, there was no reason for it. I had noticed what seemed to be an increased number of follicles falling out when I showered and got nervous. But the dermatologist I went to said I wasn’t really showing signs of male pattern baldness or anything like that. Plus, there’s no family history of early hair loss. But the derm said there’d be no harm in trying Propecia as a preventive measure. Sounded good to me. I didn’t do much research on side effects, just figured that what Merck said - few get sides, always resolves if you quit - was right.

For the next 13 months or so, things were basically fine. I was not keeping close tabs on side effects because I hadn’t been worried about them going in. So it’s hard to say exactly what I experienced in this time. I will say that it seemed sometimes like my erections weren’t as strong as they used to be, that I didn’t ejaculate as forcefully (or with the same volume) as before, and that I wasn’t quite as interested in sex as before. But…this was not major or debillitating. I would estimate that I was functioning at about 80-90% of what I was used to for those first 13 months. It didn’t worry me or prevent me from having an active sex life.

Things seemed to change about 2 months ago, and this is where I get confused. I had an awful break-up. I was emotionall devastated --couldn’t sleep, paciky during the day, prone to crying when was alone. I think this was the most emotionaly traumatic experience in my life. It was in this time that I realied one night that it had been a week since I’d masturbated, and that I didn’t really have much interest in doing so. A year ago, I would have ben ready to explode after holding out that long. It occurred to me that I wasn’t getting aroused much during the day. Still, I wasn’t shu down completely. There were plenty times in these 2 months when I did want to masturbate, and I did have 2 sexual encounters. I would say I was functioing sexually atabout 40-50% of what I used to be.

I was kind of figuring the emotional stress from the break-up was the reason for this, although I wonder now if I’d actually been on a long, gradual decline and that it’s just a coincidence it synced up with the break-up. I started worrying about Propecia when I went to a sleep specialist last week. I told him I was on Propecia and he urged me to get off, told me about the class action suit and all of the problems people were reporting. It was news to me and startled me. I should add: I panic easily and am prone to anxiety, especially about health stuff. I have always been this way. When I got back home after seeing the sleep specialist, I began researching side effects online. It was terrifying. I picked up the bottle of pills and dumped it in the toilet.

That was last Tuesday night. It’s now Sunday – 5 days later. I haven’t had a pill since then. What’s happened since then is that my sex drive had disappeared completely. I tried to masturbate twice and it was a chore like I’ve never experienced – took forever to get it even half-way hard and none of the usual stimuli were getting me excited. When I finished, my penis felt exhausted – like it had been overworked. Besides those two times, I have had no erections since I quit. It sits there flaccid all day, never stirs. I don’t have morning erections. I try to make myself fantasize and lose interest. I am now at basically 0% of what I was before.

As you can see, there seem to be a lot of issues going on here, and I’m trying to sort through them. Could the post-break-up stress combined with panicking about Propecia side effects explain the rapid decline of the last 2 months? Could it mostly be in my head? Or was I on a long Propecia-fueled decline, withmy system crashing when I stopped taking the drug? I’d like to think it’s in my head, but I really can’t get it up right now, and it shouldn’t be that difficult to do.

#2

Figured I’d post an update. It’s been 2 days since I posted this. Symptoms are status quo – no morning erections, no spontaneous erections during the day, no instinct to fantasize upon seeing someone attractive, and when I tried to masturbate last night, lots of frustration. Basically, I was able to get somewhat interested in the pornography I was watching, but my penis wouldn’t get hard. It was the strangest sensation; I could feel myself getting aroused on the inside, but there was no indication of it at all in my penis. The arousal wasn’t nearly as powerful as I’m used to and it took forever to build up to it, but once I felt it, it quickly turned into the feeling you get right before you’re about to ejaculate — except my penis was still soft. It was only at the last second that my penis got about halfway hard, at which point I ejaculated. It was pretty explosive – which is to say, there was a lot of volume (like you;d normally get after not masturbating for a few days). Needless to say, the penis immediately contracted to a flaccid, shriveled state as soon as it was over and it has remained that way since.

I went to a urologist today and told him my story. They took some tests – testosterone/hormone levels, results won’t be in for a few days; an ultrasound; and a urine test (he said I seemed to have incomplete bladder emptying, but wasn’t sure – and after he listed to my story, he told me he was confident I was having a “reverse placebo effect.” He was not denying that Propecia was an in issue. He told me he would never take it and that he sees cases all the time of men who get bad sexual sides from it, and he said it may have affected me too. But he was confident that my overwhelming problem was my own stress/anxiety/mental block. He prescribed a trial course of Cialis, the idea being that it will help get blood flowing down there and maybe help me build confidence that I can achieve normal erections. I’ll pick up the prescription tomorrow. I think I’ll wait until the weekend to try it.

#3

I got the results from the blood work the urologist ran, wondering if anyone can help interpret:
Sex hormone level: 45
Testosterone: 468
Free testosterone: 76
PSA: 0.4

I’m a 32-year-old male. My sense is the testosterone level is low, but the uro’s office says it’s normal…

#4

Post ranges besides your test results.

#5

How is your mood now?

#6

Thanks for the replies. I got the numbers over the phone – didn’t realize there were other numbers for range to ask for. I’ll call tomorrow and get the info.

Reading up on it, it seems possible this is an effect of the anxiety/stress I described – that it has brought my testosterone level to the low end of normal…enough for me to notice decreased libido, but maybe not the complete crash that others here describe? My mood is the same it’s been since June 20, the day the sleep specialist advised me to get off Propecia. I am pretty sure there were two very specific drop-of points in my sexual interest ability. The first was my break-up in mid-May; it was in the week after that that I first took note of my lowered sex drive. The second was meeting with the sleep specialist; since then, I’ve been obsessed every minute of the day with whether I can get an erection, and my interest/ability seems even lower. I did mastrubate last night for the first time in 6 days. Function was better than a week ago (I guess 6 days off will do that), but I lost hardness a few times during it – maybe because my mind was thinking the whole time, “Is it working? Good, it’s working. No wait, it’s not as hard as it should be. Now it’s getting soft. Wait, now it’s coming back…” Etc.

The other symptom I’ve had since meeting with the sleep specialist is an intense need to pee very frequently – basically, my urethra will feel sore and achy on the inside, but not a lot will come out when I go. That will give me relief for about 45 minutes, then the urge will start to build again. I’ve had prostate issues through the years (several prostatitis bouts, diagnosis of OAB, told my anxiety made me pee a lot, etc), but this feels a little different in nature. I was also noticing in the week before seeing the sleep specialist that the feequency of my urination was increasing, but the urethra pain I’m describing only came after meeting with the sleep specialist.

#7

That’s me. Plus I notice when I do ejaculate, there are NONE of the euphoric chemical reaction feelings (e.g. Oxytocin and endorphins I believe…) one normally experiences. I might as well be a chair or mailbox or some other inanimate object ejaculating, if that’s not too obtuse an analogy.

It’s not in your head, IMO. What I notice overall and it’s been a year now since I’ve quit, is that I seem to be much WORSE than when I was on Finasteride. On Finasteride a Viagra had maybe a 60 - 70 % efficacy… now it’s like 20% of my pre fin ‘normal’.

#8

OK, I got the complete results, with ranges:
Testosterone, total (NG/DL): 468.0; range: 175.00-781.00
Testosterone, Free: 76.51 (PG/ML); Range: 47.00-244.00
SHBG (Sex Hormone Binding Globulin): 45.10 (nmo/L); Range: 10.00-57.00
Albumin: 4.7 (g/DL); Range: 4.2-5.5

Saw the urologist in person today, he insisted it’s a normal reading.

#9

Next time, queue up Crisler’s 1 min video on YouTube before you walk in the appointment like I did with my main M.D.

youtube.com/watch?v=BEGCTMtlgoc&list=PL42478971681A9A92

I kind of insisted he watch it on the my phone, and he did. M.D.'s believe other M.D.'s before they do patients. Idiots.

1 Like
#10

I’ve been reading up on hormone levels in men today and now I’m panicked. If I’m reading this (mens-hormonal-health.com/normal-testosterone-levels-in-men.html) right, then my total testosterone, free testosterone and SBGH levels are all where they should be for a 60+ year-old man. I’m 32. And as I read about it, it seems like elevated estrogen is a cause of elevated SBGH, and that elevated SBGH is a reason for low free testosterone. And Propecia causes an increase in estrogen. So while they didn’t test my estrogen levels, it seems like there’s a pretty strong indication here that this is what has happened to me.

I’m struggling to see how anxiety/stress would do all of this together. I know that it lowers testosterone levels (and, I assume, free testosterone) but does it ALSO elevate SBGH levels?

The timing on all of this remains weird. I became aware of a decreased sex drive in the week after an awful break-up (a break-up I am still crying over). But I was still sexually functional in all of that time. It was only when I learned about Propecia side effects that I went from 50% to almost 0. Still seems like a major coincidence – but these numbers seem damning…

#11

Good chart with Level by Age. Apparently I’m ‘off the charts’ and hanging with the 125 year olds.

#12

Sorry to keep posting what amounts to an internal monologue, but this is on my mind 24/7 and I’m experiencing emotions – fear, panic, despair – that I’m finding very hard to deal with, and that others here can probably relate to.

Anyway, I had one thought tonight about how to square the test results with the stress/anxiety theory. The idea is that my estrogen was elevated by the drug…which would explain that fat I put on around my belly last fall (after about 6 months on the drug), and maybe the other major side effect I experienced before my mid-May break-up…which was ridiculous, excessive sweating/night-sweating (that symptom has gone away since I quit). So this would explain the high SHGB number. Then there’s the testosterone: Maybe this is on the low end more because of the stress/anxiety since my break-up (and since learning about Propecia side effects)? Could it be that my testosterone is down since mid-May not because of the drug, but because of stress/anxiety – with the SHBG number being high not because of stress/anxiety, but because of estrogen from the drug? Two separate things happening to me, in other words. (And, I guess, this would make my free Testosterone extra low, because of the high SHBG?)

Just a (hopeful) thought…

#13

I figured I’d post an update on my situation, in case it’s helpful to anyone, or if anyone can relate and offer thoughts/advice. I posted my story shortly after I quit on June 20 (viewtopic.php?f=3&t=371). It was a confusing situation and I was trying to figure out what was happening to me. What I can say now, 10 weeks out is:
* I didn’t have a post-Propecia crash like others here describe. I was in a panic when I quit, so I was hyper-aware of allof my symptoms from that point forward, and still am. But I didn’t have any sudden surge in sexual energy, nor did I have a moment where it all crashed. What did happen was that I was in such a panic that I had trouble for a few weeks getting aroused at all, and had little interest in sex. Then, interest started returning, and with it, my functioning. I don’t think I have any permanent sexual issues. I’m functional. This is good news.
* My sweating pattern changed: I wasn’t on the lookout for this, but it happened. Basically, I was on the drug for 15 months, and toward the end I was sweating like crazy all the time. The slightest exertion would set me off, and I’d wake up literally drenched in sweat. Within a week of quitting, this seemed to completely change – at the height of a heatwave, I was barely sweating, and didn’t feel the heat at all. Pre-propecia, I’d been a heavy sweater, so this was very disturbing. Within a few weeks, though, the level of sweat seemed to increase – not to what was always normal for me, but better. However, I realized that the smell of the sweat had changed too – it was like vinegar now. After going to a number of doctors and describing the situation, I tried an acupuncture specialist this week. She told me she would try to reset my hormones. I was skeptical, but what the hell? By the end of that same night, the smell of my sweat seemed to be changing back to normal. For the first time, my armpits smelled like they used to. The next day, my sweat pattern during the day seemed much closer to normal too. This is also good news, obviously.
*I am having serious issues with urination and pain: This is the bad news. It’s complicated because for most of my adult life (I’m 32) I’ve tended to pee a lot. This was before propecia. I also had some other urinary issues (post-void dribbling,for instance) before Propecia. I had been to a urologist a few years ago who could find nothing wrong and diagnosed OAB, basically because he had no other options. Anyway…within a few days of quitting, I began to experience a very deep, uncomfortable ache-like pain near the base of my urethra.Can’t tell if it’s actually centered in the back of the urethra, or the bladder neck, or the urethral sphincter, or what. Sometimes, pain seems to radiate out from there. The pain seems related to the need to pee – which is even more frequent now than it normally had been for me. Basically, when I go, the pain subsides and I’ll get a short period (15 to 45 mins, generally) of no symptoms, when I feel like I used to down there. But then I start getting a sight “I have to go” feeling and pressure and pain begins building again in that same spot. There’s no pain elsewhere in my bladder. I can’t figure it out. I’ve been to 3 urologists. No UTI, no prostatitis (but I was given an aggressive course of Cipro just in case – no change), nothing remarkable in the badder neck when I had a cystoscopy, and nothing unusual in the Urodynamics test. The Uro I’m now seeing – who seems pretty good – suggests it’s some kinf of pelvic floor dysfunction and has prescribed physical therapy, yoga and various stress relief stuff. I’ve been doing PT for a few weeks now, but it hasn’t really done anything. She says the muscles in that region are really tight – but I guess they probably always have been, because I’m a nervous/anxious person in general. He also tried an apha-blocker to relax the bladder neck muscles,but that didn’t help.
This is a VERY frustrating problem. There is really no relief. Since June 20, I’ve had periods of time on maybe 4 days when it seemed to stop.I can’t describe the relief and happiness I felt in those moments – finally, I can get on with my life! But then it all just started up again. Like I said, I’ve had to pee frequently for much of my adult life, but it was never debilitating – there was never this pressure/pain sensation associated with it. It would be annoying, but it wouldn’t hurt. This is different. At its worst, I’ll have a very strong pressure/pain sensation (8 or 9 on the 10point scale) and will have a strong urge to go, but when I get to the toilet, it will take 20 seconds for the stream to start, it will be very weak,and only a small amount will come out. And yet this will give me tremendous relief and this will empty the bladder completely. (But, to make this even more complicated, I don’t always have hesitancy/weak stream/small amount. If I’m drinking a lot of water or whatever, the bladder will fill up normally and I’ll pee a strong stream and heavy volume – so there’s no blockage or anything.)
Basically, something is going on at the back of my urethra or in the bladder neck. I know the prostate is near there, but there doesn’t seem to be anything wrong with it. It feels like a band of aching – at the urethra sphincter, if I had to guess exactly where it is, but it’s tough to tell. Even a small amount of fluid in my bladder irritates it. But all of the invasive testing I’ve had turns up nothing.

This is driving me crazy. And I can’t find any similar stories, despite hours of looking. This did seem to improve last night, just as I was getting the sweat improvement. But it came back with a vengeance today, even as the sweating remained improved – very discouraging, since I thought if the sweat improved this would too.

#14

This has been an awful summer. I’ve written about my experiences here (viewtopic.php?f=3&t=6751). I’ve slowly come to understand what, precisely, it is that I’m going through. By far the biggest problem is an awful, near-constant pain that (as best I can tell) is at the base of my urethra. It’s like an aching band, and sharp pain can radiate out from it. It seems that whenever fluid begins accumulating in my bladder, pressure/discomfort builds at this spot. Sometimes it’s slight, sometimes it’s brutally intense, and sometimes it’s in between. But it’s been a near-constant presence in my life since a few days after June 20, when I quit Propecia cold turkey. Going to the bathroom relieves the pain/pressure generally, but it begins building again, right away, often within 15 minutes. Obviously, this cycle has hindered me in other ways – I don’t think I’m sexually dysfunctional now, but if I want to do anything sexual, I need to go to the bathroom, empty whatever’s in there, and then I have about 15 minutes to do something.

I’ve had extensive urological testing. I don’t have a UTI. I don’t have prostatitis (although the uro put me on a 4-week Cpro course just in case). I don’t think I have interstitial cystistis; the Uro doubts it, and the pain is only in that very specific location – nowhere else. There is no apparent dietary trigger. I’ve had a cystocopy, which turned up nothing abnormal. I had a Urodynamics tes; same result. I tried FloMax in case it was an issue with muscle tightness at the bladder neck. No luck. I’ve been having pelvic physical therapy for a few weeks now; no progress. I had an acupuncture session last week; she said the treatment was aimed at resetting my hormones. It actually was encouraging. About 6 hours after the treatment, the pain/pressure seemed to lessen, and the next day was one of my best ones since 6/20 – except that it all came back with a vengeance at around 9pm. In hindsight, I don;t know if acupuncture helped at all; it may just have been a coincidental window of less-intense pain – I’ve had a few of those since 6/20, and they’re always gone fast. Either way, I’m going back for more acupuncture next week.

I spend way too much time googling these symptoms, searching these boards, and trying to find an answer. This pain pattern all started about 3 days after I quit the drug. I’d been on it for 15 months. There has to be a connection, but I can’t figure it out. It seems like the sudden hormone change triggered by quitting somehow brought this pain about. But how? All I know is that there seems to be irritated nerves basically at my urtehral sphincter. I believe this area is innervated by the Pudendal nerve. I am thinking the problem is related to that; quitting Propecia somehow affected the Pudendal nerve, and this is the result. Looking round here, I see Pudendal problems popping up for a lot of others. But how does this work? Can anything be done to reverse it? I’ve honestly had the thought I should take the drug again. It definitely messed with me (sweating problems, redistributing fat to my abdomen and sides, temperature sensitivity) and it’s awful to be on it – but, I’ve been in constant, unrelenting and crippling pain for more than two months. This has profoundly messed up my life. I can’t date, can’t go out, work is miserable, etc. I look back longingly at my life before I ever took Propecia. I cry when I think what I could have if I’d never taken it. And I wonder if the answer to my pain is to take the drug again, then ween off. Like I said, it seems that for me, quitting was the trigger. I never had this problem when I was on it…

#15

RecentQuitter
how many acupuncture treatments have you taken?
I would say stick with your accupuncturist maybe this will cure your issue. Any way what he thinks about your condition?

#16

If anyone knew exactly how finasteride affected us, we wouldn’t be here. Research is attempting to uncover our issues, but as everything stands there are no solid answers as to what mechanisms in the body have been damaged by the drug.

That said, I would definitely look into pudendal nerve testing with a neurologist. Do you have penile sensitivity problems? If so, I know Dr. John Mulhall, a urologist at Sloan-Kettering in Manhattan, does some sort of nerve test. I don’t know the details of the test – I don’t have nerve or sensitivity issues and thus don’t know much about the testing or methods of diagnosing – but it may be worth investigating. I see you’re in New York; if you’re in or close to New York City, that test may be something worth considering. I believe the user “Frustrated” has had pudendal nerve problems, and has also seen Dr. Mulhall, so you may want to send him a private message to get his take on things.

I’d continue with this, as the frequent urination/inability to empty bladder/history of prostatitis indicate a high likelihood of pelvic floor problems. Again, don’t know where you are in New York, but Beyond Basics Physical Therapy, in Manhattan, is extremely well regarded. The founder of Beyond Basics, Amy Stein, wrote a book a few years back called “A Headache in the Pelvis,” which details pelvic floor symptoms and treatments. Look up the user “Moonman1” and read his posts. He’s suffered from pelvic floor dysfunction and I believe has read the aforementioned book. I’ve been to Beyond Basics once myself but for a variety of reasons had to suspend treatment temporarily, thus I can’t provide much of an opinion beyond what I’ve heard about them from others.

I realize the following is hard to do when you’re in such pain, but it’s extremely important to try to relax and allow your body to attempt to correct itself. Believe it or not, you’re still in the extreme early stages of your issues; in fact, many guys on this board advise others to wait three months before posting, because there’s a good possibility your problems could still go away on their own in that time. Getting away from the board is also important because working yourself up reading random theories on the Internet is going to do nothing but stress yourself out and possibly make things worse. This is doubly true with your history of anxiety and anxiety-induced health issues. Again, it may be tough/impossible with the pain you’re in, but if you can manage, try to get out of here until at least the three-month mark to see if any improvement comes. By all means, see doctors and seek treatment/testing; just check out of this corner of web space.

#17

I want to post this because I think my experience could be helpful to some people. But a warning: I’m not going to check back here, at least not for a while, after I post this. To be honest, (for understandable reasons) this forum can be a depressing place, and visiting it has brought be (even more) down since all of this began. I’ve mostly stayed away for the last few months, since my last post, but found myself looking this week because of the point I’ve reached in my treatment. Anyway, here’s what’s happened since early September:

  • I visited Beyond Basics many times and pursued the pelvic therapy route. Also had a urologist recommend that, saying the only thing he could find with me was tight muscles. I also tried acupuncture. All of this was for the intense, brutal and persistent urinary issues I’ve described here. None of it worked. I might have a day here and there that wasn’t bad, but it would always come right back. I can’t adequately describe how uncomfortable and debilitating this was, and I was doubtful that tight pelvic muscles would really be the cause; after all, I’ve been an anxious person my whole life; I have a feeling those muscles have always been tight. But it was literally a few days after stopping Propecia that these horrible symptoms really kicked in. I finally stopped with PT a few weeks ago, because…
  • While pursuing the PT route, I also went to see Dr. Jacobs in NYC. I fully expected, based on everything I’ve read here and elsewhere online, him to tell me that there was no treatment for me – that he was aware of the problem but that he had found no suitable treatment for the prolonged sexual issues (and also the urinary stuff I was dealing with). But he surprised me, and told me that actually most of the PFS guys he sees are treated fairly easily; he generally finds that they have low bioavailable T, and he’ll either try Clomid, or gels, or shots with them. I expressed surprise, told him that there were people on line insisting that he’s never successfully treated anyone, that hormone therapy never worked, etc. He told me he has definitely seen patients who don’t respond, but that most do. He sent me for bloodwork, which took forever to get back, confirmed low bioavailable, and we tried Clomid. Which did nothing. So we did more bloodwork, found that estrogen had gone up that LH and FSH (I think) hadn’t. I was despondent. He wasn’t worried, suggested we try injections. I had my first one nearly a month ago.There is really good news and really unsettling news:
  • GOOD NEWS: My urinary issues began improving right away. The shot was supposed to last three weeks, and it was the best three-weeks I’ve had in terms fo urinary symptoms since before I quit the drug. There were a couple days when things seemed to regress, but they’d turn right around. There were many days when it seemed like almost nothing was wrong – something I really hadn’t felt all these months. I had the second shot a few days ago, and since then, the improvement seems complete. No issues with urgency, frequency, that awful sharp pain/pressure that I would get. It’s amazing. My best guess is that something about the return of DHT when I quit Propecia messed up my prostate – not in a way that a urologist could detect with a DRE or even a cystoscopy, but…in some way. And the infusion of testosterone has restored health to the prostate and alleviated those symptoms. (I have found medical literature on the web that seems to suggest LUTS (Lower Urinary Tract Symptoms) can be improved by TRT – so maybe I’m further proof of that.) Whatever the cause, it is pretty great to have that problem behind me.
  • UNSETTLING NEWS: My sex drive flickered on an off during the first three-week cycle. The Dr. said I’d notice the shot right away, but it really wasn’t until 2-3 days in that I felt a rise in my sexual energy. But it was real. Strong erection, desire I hadn’t felt in months, stamina, etc. On about Day 5, this seemed to crash (concurrent with a flare-up of the urinary stuff). I was distraught, but within a few days, it came back again, increased over a few-day period until I felt amazing again, and then…crashed again. Only to return again a few days later, then fade out over the final 4 days of the cycle. And when I say fade out, I mean a complete fade-out: Loss of morning erections (something I was actually having most days this summer and fall, for all of my issues) and incredible difficulty getting an erection. I had my second injection the other day, but this is where my sexual function still is. I can look at sexual stimuli and get no response at all. I am having no morning erections – this has been the case for 6 days now. And I’ve been taking Arimidex for the last few days, so I doubt it’s because Estrogen has spiked.

So…I’m pretty down right now, and obviously worried. Am well aware of the stories on here from guys who said TRT made them worse. That may be the story for me. Or maybe it will bounce back again. I’m not regretting my decision. I have total confidence in my doctor, and I’m seeing him again this week. Maybe he will find a level that’s out of whack, or change my dosage, or … something. The fact that I experienced several cycles of improvements seems encouraging to me. And, as I said, the quality of life improvement from the apparent resolution of the urinary issues is profound. And I don’t think that would have happened with the testosterone injections. Right now, I’d be thrilled to get my libido/sexual function to 50% of what it used to be, combined with the urinary issues staying resolved. I could live with that. And now I’m going to try to make it happen, and don’t plan to check back here for a while. I think you can understand why.

#18

Recentquitter, I also went to Dr. Jacobs but did not want to do the Testosterone injections. Research is moving in the area of Neurosteroids and neurotransmitter inbalances. Perhaps you suggest to him Progesterone. I responded well after just 5 days on it. He has some ideas with regards to it.

#19

It’s been more than 6 months since I last updated here – figured I’d share what’s been happening and what I’ve tried.

To update: I saw Dr. Jacobs last fall and in November began T injections. The initial result was amazing: My libido/sexual function were fully restored about 2 days after the first shot. The it would kind of come and go in waves over the next few weeks. One day would be bad, the next I’d get erections easily just thinking about sex. But after those few weeks, the sexual effect just seemed to wear off. I’ve continued taking the shots since then, dosage and frequency have even been upped, but I get absolutely no sexual boost from them. None.

But I’m still taking the injections because they seem to be clearly helping with what became an awful issue for me after I quit Propecia last June (more than a year now – hard/depressing to believe). Basically, within a few days of quitting the drug, I had this constant need to pee – I mean it would come in within 10 minutes of going. The smallest amount in my bladder I would feel. I could have gone 100 times a day if I wanted to. I can’t explain adequately how awful this was. And I saw countless urologists, took all sorts of bladder relaxers, had all sorts of invasive tests and they could figure out nothing. But when I took the T shot in November, the problem improved incredibly. I still will have some bad days – and I even had a stretch in February and March when all of the urinary stuff seemed to come back, but that’s when we upped the dosage and it steadily improved. Today, most days, I have no complaints about the peeing stuff. And really, this was a huge issue for me. This wasn’t having to go to the bathroom a few extra times a day. This was just contast, unending torture. And the T, for whatever reason, seems to be the only thing that helps it.

My guess: Finasteride works on the prostate, we know that. So when I stopped the drug, it caused some kind of immediate change in my prostate – hence the peeing issues starting like 5 days after quitting. But it wasn’t a classic swollen prostate – every urologist who examined me said the prostate was normal size, shouldn’t be causing peeing issues. And I did a long course of antibiotics just in case. Still, I have a feeling the pee thing is prostate-related and related to quitting…and somehow the T has a healthful effect on the prostate. (I’ve actually found a medical paper online that talks about testosterone helping men with lower urinary tract symptoms.)

As for the libido side of things…just frustration. Jacobs has also tried some anti-anxiety pills with me, to no avail. I had one random 3-4 day stretch in March when libido seemed to come back on line, but otherwise it’s status quo. I can masturbate, but I’m usually not that hard. I can wake up with very hard erections, but they go away immediately upon awakening. On most days, if I concentrate hard during the day, really hard, I can get an erection thinking erotic thoughts…but it will also go away very fast. My basic appetite for sex, my sexual energy, just doesn’t exist anymore.

You can drive yourself crazy trying to figure this out. I see people here who talk about dietary changes, exercise regimens, autoimmune diseases, all sorts of specific hormonal imbalances, changes in brain chemistry. I have no great theory, but I will say that it seems important that the first shot of Testosterone really did bring back my sexual health. It didn’t last…but for a a while there, I thought I had solved my problem. (Can’t even begin to describe how happy that time was…) So it seems to me there’s got to be an important role for testosterone in all of this. Although, again, my bioavailable count is now sky high an I;m getting nothing sexually from it, so there’s that.

One thing I still wonder about: I was (in retrospect) having all sorts of Propecia issues for the first year I was on the drug. (I was on for a total of 15 months.) Sweating was just out of control, I gained a lot of fat around my belly/hips, just never made the connection until after. But it wasn’t until an emotionally traumatic episode – the most emotionally traumatic episode of my life, suddenly getting dumped by someone I had incredibly deep, longstanding feelings for – that my libido went. I still remember it well – it was last May (2012). We didn’t have sex the night I was dumped (not surprisingly) and I remember thinking to myself after that I’d probably have a strong urge to masturbate the next day. But I was also a mess for the next few days, barely sleeping, stressed out like never before, crying at random times…and then like a week later I just realized that I hadn’t masturbated or had the urge to masturbate since getting dumped. I chalked it up to the stressful episode – again, didn’t think Propecia. It was only a month later, when I randomly told a doctor about my Propecia use, that all the pieces came together and I quit immediately. I had no post-quitting surge/crash – something Ive noticed other here describe – but my libido just didn’t change. Basically, it’s been in a severely lowered state since that break-up in May '12. Except for when I had the first T shot.

I doubt that my libido issues are just a result of stress/anxiety. It’s been more than a year, I’d have to think there’d be some variance if it was just stress.anxiety. But I wonder if there was some kind of combination of forces at work – where the stressful breakup episode “broke” a system that had been altered by Propecia? Or something like that.

One final note: There were other changes that occurred after quitting. I do not sweat nearly as intensely as I did while on the drug, but my sweat now smells like vinegar. If I go running and then launder my clothes, you can still smell the vinegar. I run this by doctors and they shrug, but I think it must be a clue - taking the drug made me sweat buckets (but the sweat didn’t smell like vinegar); withdrawing it at first made me stop sweating almost completely (for like a week) and then when I started sweating again, it smelled like vinegar.

So that’s where I am now. I guess I’ll keep taking the T, even though it has no effect on libido. It’s good not to have the urinary stuff be much of a problem anymore. I wonder about trying progesterone, or DHT supplementation, or any of the many other things others on here have tried. But it just seems kind of pointless – I follow every thread on here, and they always seem to lead to dead ends.

#20

I think you are on to something important. Low t is associated with low libido, but it does not mean everything. There are millions of men out there with lower than average t, but no libido issues. What can cause your genitals to shrink and libido to disappear almost instantaneously is a medical mystery. I’ve told my psychiatrist that if a severe crash happens to a Dr the medical community is going to be in complete disbelief that something this severe could happen even with ver short term use