I would just like to chime in here Aero and say that you are doing a fantastic job of describing your situation, and as I am sure many of us are thinking ‘our situations’. It is good to see that you are working with Goldstein and winning the battle (at least partially) against what sound like some of the more severe side effects experienced by anyone on this site. I wish you the very best of luck in your recovery. Keep your head up, carry on doing your research and acting upon it - you will get there eventually mate!
Aero Engr,
Could you elaborate on how clomid has helped build muscle? How severe was your muscle loss in thighs, arms, elsewhere and how has it been restored? Is this alongside an exercise programme? I am interested as I have this side as do a few others, and it appears resistant to treatment.
I think the Clomid alone won’t do it (at least probably not for years or whatever); the Clomid raises your testosterone, and Arimidex controls your estradiol so that it doesn’t climb too high because of the elevated testosterone (testosterone breaks down into estradiol/estrogen). The Cabergoline inhibits the secretion of prolactin, which when present at elevated levels can also cause sexual dysfunction. I had to take all three of these because I had low testosterone and normal estradiol (so when testosterone got raised by Clomid, I had to use Arimidex to control my estradiol so that it stayed in the normal range), and I had elevated prolactin too and you manage that by simply taking the Cabergoline.
You definitely need to hit the gym to build muscle, just like you need to hit the gym to build muscle when you’re healthy; it’s no different here, presuming that the Clomid is effective at raising your testosterone (I think I’ve heard that some people aren’t responsive to this drug). Use the machines and free weights and whatever else at the gym you can find to help you build muscle.
Yes, it definitely takes a lot of time, and it can take three times as long to recovery from something like this as it took to cause the damage in the first place. Remember I was like this for over nine months before I finally got someone to treat me for it, so reasonably I should expect to wait at least that long if not longer before I make a full recovery. The muscle loss for me was really severe. It got so bad that my muscles didn’t even seem strong enough to hold my body together; it was like my body was coming apart at the seams, as I was experiencing real trouble with my knees and hips in particular. I cannot remember ever being that weak before; I have to think back to pre-puberty to find something close.
My body weight historically had been between 215 and 222 lbs and I had a very lean body type. Right now, my body fat percentage is roughly on track with that lean body type; however, I now weigh 202 lbs, which means that I am probably down at least 12 lbs in muscle. I think I heard somewhere that at best you can build 1-2 lbs of muscle per month, so based on that it is reasonable to assume that I won’t be near my target until perhaps the end of this year. I’ve been on the drugs for five months and I’ve come a long way so far; the knee and joint pains are totally gone and I probably have what you would call a “normal” body profile and amount of muscle mass at the moment. The problem for me is that I used to be an athlete, so my “normal” was at a higher level than this “normal” average, so I need to improve further before I can declare victory against this body wastage issue.
It took me all of those five months before I could be sure that my goal of full recovery was even possible; for the longest time it seemed like I would not make it. You need to be patient with these drugs because although they may raise your testosterone quickly, your body is limited in how responsive it can be to making use of that testosterone.
Thanks.
I can’t get a doc to give me Clomid but may try it anyway. I’m not sure if TRT would do the same thing, unless I use an AI alongside. Also, in addition to my muscle loss I experience fat gain so I actually held, and in fact increased my weight.
I remember that you story was somewhat unique in that you had really horrific side effects while on the drug and didn’t crash at all. Maybe that might explain why your body is more responsive to endogenously increasing testosterone than the rest of us but I’ m not the guy to be figuring the ins and outs of that one out. Maybe you also gave it a bit more time.
As an aside, did you ask Goldstein about that dent and the possibility of Peyronie’s? I sometimes wonder why Trimix or Caverject (injectable hardons) aren’t discussed more around here as they are common treatments for men with prostate cancer induced ED, but then again they aren’t supposed to be particularly pleasant in the absence of libido or sensitivity. Personally, I can understand why you are willing to try this, but it could also lead to a dead end where the last stop is implant.
I understand your feelings of anger and outbursts of rage against this situation. I get this occasionally when I think about the toll this has taken on my life past and present, where I could have been had I never researched and decided to take this poison, had I wised up and quit earlier etc. It will probably take a lot of psychological therapy to eradicate or at least deal with this, and to be honest woe betide any bastard that crosses me from now on in!
I would strongly advise you to get the Clomid through a doctor somehow, preferably an endocrinologist who specializes in (or at least understands) male health and the importance of testosterone. I strongly feel that this drug is very safe; however, you don’t want to let your situation get out of control because it is very important to monitor your testosterones and estrogens both before, and after, you begin treatment with these drugs so that you can monitor their effectiveness.
Again, I’m not a doctor, but I would definitely stay the hell away from TRT; it will most likely destroy your testicles over time and this is irreversible. My understanding is that some guys can supplement their testosterone production by using testosterone creams or patches, but these guys are also already on a drug like Clomid at the same time to keep the natural testosterone production pathway alive. For me, just the Clomid alone was enough to raise my testosterone above the normal (2 sigma, greater than 95% of the population) ranges, so there was never any reason for me to consider even supplementation with the creams or patches. Unlike (apparently) the experiences of some guys who are members of this forum, my body seems to still be at least mostly responsive to testosterone so as long as it stays high or high normal I think I will be OK in most regards. One interesting thing that I’ve noted is that my total testosterone is consistently more than 2 sigma high, while my DHT remains relatively lower and is roughly just in the middle of the normal range; I don’t know how much variance is typical with these tests, but it makes me wonder if there could be some sort of lingering inhibition of T to DHT conversion due to my prior finasteride usage.
Just to clarify, I did crash from my usage of Propecia but the crash occurred on the first day of my usage of drug, not a few weeks after discontinuing its use. I hit bottom in less than a week and stayed there until Dr. Goldstein got me on the Clomid and the other drugs nine months later.
I did ask Goldstein about the dent on my penis, and he was totally unconcerned by it and said that I shouldn’t be concerned about it either. It is not Peyronie’s, at least according to my understanding of how that condition is defined; I have no plaques in the erection chambers of my penis. I am pretty sure that this dent, and the other weird spot of wrinkles, are due to underlying damage to the smaller blood vessels that are at the surface of the skin of your penis. Basically, there is a padding of tissue around the penis outside of the erection chambers and I think that this is what was damaged, not the erection chamber itself; when my penis becomes erect, it achieves a perfectly normal shape (no curvature) and the dent becomes much less visible (it becomes almost flat and is much harder to detect, unless you know to look for the patch of thinner skin in that area). Peyronie’s is, as I understand it, associated with damage or disfigurement to the erection chambers (and not the outer cushioning).
Injectables have been very effective in helping me to maintain an erection; I don’t understand your assertion that it could lead down a path where I would need an implant. I am guaranteed to achieve an erection if I use them; however, at least in my case, I am also guaranteed to have to use a shot of adrenaline/saline solution to bring the erection back down later when I am done and no longer wish to have the erection (so actually, I need to carry two syringes with me on a dinner date and perform this trick twice, not just once). These erections are not very enjoyable because they are not natural (there is essentially zero arousal or interest on my part), so they have little utility in alleviating the distress that I experience because of my sexual dysfunction. This is the reason why I am now looking into taking drugs like bupropion and naltrexone to hopefully restart, or at least supplement, the ability of my mind and body to become aroused.
As I understand it, the response to this physiological arousal that I am missing is what the injectables reproduce directly in the penis, so my hope is that taking drugs like these will allow me to get erections while avoiding the injections and at the same time fix the underlying libido problem that prevents me from wanting to utilize an erection for sex (I can get a erection with the shots, but it’s pointless because I have no desire to use it). I’m not sure if I should expect these drugs to fix the sensations of genital numbness and genital detachment that I continue to experience; it is hard to tell where the source of these particular problems lie, be it in my brain and maybe correctable with these drugs, or somewhere else that we cannot address because it may be caused by damage to the nerves in my penis or elsewhere in my body.
I thought I should post again to let you all know how I’m doing. I have made good progress against the persistent Propecia side effects, but still have a few significant issues that haven’t yet been resolved to any appreciable extent; these are 1) low-to-zero libido and lack of interest/excitement, 2) insensitivity of my penis, and 3) impotence/ED. Outside of these sexual issues, I would rate my overall recovery from the body wastage and other physical side effects at >95% and my recovery from the cognitive impairment issues at >75%. I continue to improve physically and cognitively with the passage of time; however, it is not clear to me if my sexual health is improving.
After additional experimentation with the injectables, I learned that my persistent (greater than 4 hour) erections were caused by the fact that I was using too much of the medication; if I were using the right dosage, I would not have had to use the adrenaline injections to bring myself back down. Apparently, I am an extremely healthy guy cardiovascularly, so it only takes a relatively small amount of smooth muscle relaxation to allow my arteries to fill my penis and achieve an erection. I talked to Dr. Goldstein about this, and he confirmed that the extremely low dosage that I now use to achieve a (less than 4 hour erection) is appropriate for me. Until I had this discussion with him, I had been assuming that I was doing something wrong; the volume of medication that I use in the syringe (0.03 mL in a 1.0 mL syringe) to achieve a <4 hour erection is incredibly small, and so it seems somewhat ridiculous to have to go through the trouble of sticking a needle in your penis just to inject a very small drop of this medication.
Viagra, even at very large doses, only gives me a relatively small improvement in the quality of my erections; the driving problem with my erections is not blood flow, it is the inability of my smooth muscle tissue to relax and this is what the injectables are targeting.
I’ve recently learned that I do in fact obtain nocturnal erections. Thanks to the larger 300 mg dosages of bupropion that I had tried earlier this year, I was waking up suddenly several times a night; when waking during these times, I often noticed that I had an erection. I would lose these erections just a few seconds after each time that I woke during the night; thus, I’ve come to believe that the reason that I’ve been waking flaccid every morning may simply be because it takes more than a few seconds to wake normally in the morning (the erection goes away before I become conscious). Now I am sleeping normally since I’ve cut my bupropion consumption back down to 150 mg per day.
In an attempt to improve short-term arousal, I’ve tried using Oxytocin in doses as large at 600 UI, and Yohimbine in 5 mg dosages, and both of these were totally ineffective in improving my libido.
I am presently consuming these medications, at these frequencies:
Clomid (Clomiphene Citrate) 50 mg, #3 per week
Arimidex (Anastrazole) 1 mg, #3 per week
Cabergoline 0.5 mg, #2 per week
Viagra (Sildenafil) 25 mg, #1 per day (PM, just before bed)
Bupropion HCL 150 mg, #1 per day (AM)
Naltrexone 50 mg, #1 per day (PM, just before bed)
Requip (Ropinirole) 1.0 mg, #3 per day (AM, Noon, PM)
I’ve been consuming the clomiphene, anastrazole, and cabergoline since last November, and they have been very effective in managing my endocrinology. I began bedtime use of Viagra early in 2011, with the goal of improving my nocturnal erections and my genital arterial blood flow over time. I started the bupropion, naltrexone, and ropinirole in stages over the past few months; I am consuming these with the hope that they will correct my hyposexuality dysfunction disorder (low-to-zero libido). There have been reports that people who’ve been prescribed bupropion (for depression) and ropinirole (for Parkinson’s disease) sometimes develop issues with hypersexuality (overactive libido), and so the idea is that if these drugs have the same effect on me, that my libido might improve to normal levels as a result.
My first visit to Dr. Goldstein’s office was in early October, 2010; he diagnosed low arterial blood flow (50% of normal, per his comment) and reduced perception thresholds for hot and cold stimulation (which means that my penis had become insensitive). Recently, I requested that Dr. Goldstein perform a follow-up examination to assess my blood flow and sensitivity again, so that we could see if there was any improvement in my condition over time. I visited his office for the third time in June of 2011; during this visit, he again diagnosed reduced perception thresholds for hot and cold stimulation. My perception thresholds were, in fact, exactly the same as they were last October which means that there had been no improvement in genital sensitivity during the eight months between visits. However, he did record an improvement in arterial blood flow; in the artery on the left side I scored a 60 (30 is passing), but on the right side my blood flow was still reduced and was at 50% of normal.
I’ve been told that some women use topical estrogens on their genitals, and that they report improved sensitivity and lubrication as a result. I want to try to do something similar to improve my sensitivity, and so once it arrives in the mail, I will begin applying testosterone cream to my entire penis with the same frequency that these women apply the estrogens. It will be applied every other day, in the evening just before bedtime. I’ve also been told that, presuming it works at all, that I should expect to wait a few months to realize an improvement.
From above, “…still have a few significant issues that haven’t yet been resolved to any appreciable extent; these are 1) low-to-zero libido and lack of interest/excitement, 2) insensitivity of my penis, and 3) impotence/ED,” I believe that my 3) impotence/ED is directly caused by my 1) low-to-zero libido and lack of interest/excitement and/or the 2) insensitivity of my penis. My belief is that if I can correct one or both of these two issues, that my erectile dysfunction will go away because it is probably just a product of these other two problems; this is the reason why I am targeting both of them aggressively at this time. I am presently using bupropion, naltrexone, and ropinirole to try to address the first issue, and will soon begin using the topical testosterone to try to address the second issue. In a few months I will post again to let everyone know how this works out.
Thanks for the update, Aero… and good to see some improvement.
Has there been any change with the small dent and/or wrinkles on your penis?
Have you ever had a 24hr saliva cortisol test? …fatigue mostly gone?
As far as I can tell, there has been no change in the dent or the series of wrinkles on my penis; they may have improved a little bit, but I just can’t tell because they look pretty much the same as they did when I first noticed them almost a year ago. However, there has been some improvement in the coloration of my penis; the head of my penis is now a bit pinker in color (less purple) than it was several months ago and I can’t see as many of the white pigmentation spots on it either. It seems as though there has been a progressive improvement in the color (and appearance in general) of my penis since last fall when I began the medications to address the low testosterone, but it has been so slow it is difficult to notice improvements on even a month to month basis.
I never had a 24 hour saliva cortisol test; I am unfamiliar with the test, and am unfamiliar with the significance of cortisol. I believe this was checked during a couple of my blood tests, but I’ve never performed any 24 hour saliva or urine tests for any of my hormones.
The fatigue had faded nearly completely, but has returned slightly due to my consumption of naltrexone (and possibly bupropion as well); the naltrexone definitely fatigues me (this is why I take it at night when I’m already on my way to bed), and I know that bupropion will make it difficult for you to sleep if you take too much of it (but I am now below this threshold as far as I can tell). I believe the fatigue that I had been experiencing last year and earlier this year was caused by the combination of low testosterone and persistent depression; these have both been addressed to a large extent, though I do not yet feel like I am totally back to where I was before I had this unfortunate experience with Propecia.
Interestingly, my anaerobic strength (weight lifting in the gym) has almost completely returned, but my aerobic strength (running long distances, cycling, etc) still seems to be suffering with respect to my pre-Propecia status of health. I’ve been working both areas aggressively, but my aerobic performance just isn’t coming back to me and I continue to be a weaker runner, cyclist, and rower than I had been in the past. This is especially unusual to me because my body weight is now 195 lbs, which is 20 lbs less than it was when I was active as an athlete in college; wouldn’t you think that when your body weight drops that you would be able to run and row faster? It feels like my legs just can’t move efficiently anymore.
AeroEngr,
I am very pleased and encouraged to hear about your improvements. I have to say that I admire your strength with dealing with this. It is refreshing to see posts from someone that is taking a very educated and clinical approach to his recovery and conveying it to the forum in that manner.
York
This is an important test, because, in my and others’ experience, high level of cortisol are needed for on-demand erections and to not lose erections during physical stimulation. When I was on clomid, all my sex hormones looked great, but my cortisol was low, and I used to go soft during masturbation. This is not the case anymore, because I am keeping my cortisol high.
Other benefits of high cortisol are hormonal. High cortisol + high thyroid hormones will allow your body to accept high levels of T, without dumping it to E2 or binding it with SHBG.
Serum cortisol is useless. It tests total cortisol and not free cortisol. Furthermore, it tests it at one point during the day, without providing an overall picture of your cortisol trend. The saliva test is available for self-purchase online.
Only one way to find out.
I’ve no idea if it will last, but i recently got together with a girl who has only known me post propecia. It’s encouraging. On the sexual front it has not been great and we haven’t had a proper chance to get down to it yet, but I have atleast survived the few times we have had sex (i.e. managed to maintain a slightly softer (and bent and numb) erection with the help of arginine). I actually think having a girlfriend, rolling around in bed and just generally doing things that could provoke some sort of natural reaction is good for recovery. It’s bloody scary going into the bedroom without the assistance of some form of sexual stimulant though, but you won’t know what your body is capable of unless you do it.
I guess it depends what type of person you are, but i sought out a high class escort the first 2 times i had sex again. Please be assured i have never and would have never done this before propecia, I just feel i have nothing else to lose now. It was expensive because i didn’t want some rotter, but i just told her i had a problem and explained everything to her before we even started. Literally, i told her everything and didn’t give 2 shits because i didn’t even know her. Fortunately, she was really hot and like 25 so quite young, this helped matters. We had some pretty good sex and it felt good.
Anyway, I don’t advocate the use of prostitutes, but i know this helped me to see what my body was capable of when i had no one i felt i could engage with sexually. It’s different now and i will never resort to this again. That said, it was great to get this out of my system after all these years of wondering! 
Recently, I’ve received a few requests to update my thread, so I’m logging in here today to get everyone up to speed on my present situation. Most of you probably assumed correctly that I’ve been dormant for a while because I haven’t had anything new to report; for the most part, at least in terms of my health, I’m basically still where I was at several months ago. Although there have been a few minor changes, and I’ve detailed them below.
I’ve made some changes to my medications. I am no longer consuming the bupropion or the ropinirole. The last time I posted here I believe I stated that I was using 150 mg of bupropion daily in the morning; as time went by, I cut this back to 75 mg, a dosage that I continued late into the fall of 2011, and thereafter quit using it entirely. I was up to 2 mg of ropinirole in a dosage (#3 per day) at one point, and held that dosage level until early in the spring of 2012, at which point I cut myself back down to 1 mg per dosage for a few months, and then took myself off of it entirely late in April.
I cut myself down to 75 mg of bupropion because the 150 mg dosage level was causing mild insomnia, and after months on it I came to conclude that it was not really helping my sexual function, so I made the change to improve my chances of receiving a decent night of sleep. My sleep did improve and I did not experience an increase in depression. Late last fall, for whatever reason, I started to experience issues with intense nausea; often, I would swallow my medications in the morning and head in to work or out on a bike ride or whatever, and within an hour I would be puking my guts out. I got tired of losing my breakfast all the time, so I stopped the bupropion entirely last fall. I did experience some rebound depression for a little while after quitting, but that corrected itself after several days, and the nausea went away immediately after I discontinued the medication.
Ropinirole, in my opinion, actually did begin to act to improve my libido after several months of staying on that medication. I would actually experience moments of low or moderate arousal after swallowing it. The problem was that, in addition to the bounce in my libido, there came side effects that in my opinion negated the benefits of the improved libido. I experienced extreme fatigue and also experienced some psychological effects that were uncomfortable and simply made my head feel weird; in the literature I suppose they might refer to these as “mood changes,” but in my opinion it was really more like “mental discomfort,” and its effect on my demeanor was similar to that of a headache. So essentially, I would feel a little bit aroused, but at the same time I had a headache and felt like I might pass out. The fatigue and the “headache” impacted my ability to function at work, and since the libido bounce was momentary and not really “natural” and since it wasn’t persistent enough to actually impact the way in which I interacted with women (I was too busy feeling sleepy), I made the decision to stop the use of ropinirole as well.
The application of testosterone cream to my genitals was suggested by Dr. Goldstein. There is evidence of reduced sensitivity in my penis, so I wanted to try to do something to correct that, if there was anything that could be done. According to him, there is anecdotal evidence that this has helped some men with their sensitivity, so I wanted to try it. I have been applying it regularly for several months now, and I am waiting for my one-year follow-up appointment with Dr. Goldstein (within the next month) to retest my sensitivity and to see if it has been helping me. If there has been an improvement I will continue to use it; and if there has not been improvement, I will stop using it so that I could save money on a medication that isn’t helping.
Clomiphene citrate and anastrazole are by far the two cheapest medications that I consume, and without a doubt have been the most effective in terms of helping me with the series of symptoms that I’d experienced because of Propecia. I am experiencing no side effects from them whatsoever; only positive results so far, so since these medications are cheap, I will continue to use them for as long as Dr. Goldstein permits because I am unwilling to risk a relapse back to a hypogonadal state. Perhaps I would be perfectly fine if I stopped using them, but they only cost me like $20 a month altogether, so I think it is just dumb to risk another bout with hypogonadism to save this trivial amount of money.
I don’t have as much evidence that the cabergoline and the naltrexone have helped me, but similarly, I’ve experienced no adverse side effects so I feel that there is no reason to consider removing them from my medication plan. According to my blood test data, the cabergoline was effective in reducing my prolactin levels; like the issue with testosterone and estradiol (controlled by Clomid and Arimidex), I do not know what will happen if I stop using the cabergoline, so I have just as much reason to continue taking it at this time, although it’s true that cabergoline is a bit more expensive than these other two drugs. Naltrexone, however, is pretty cheap, so given the absence of side effects I will continue to use it simply in the hope that I might gain something over long term.
My belief is that the daily before-bed usage of Viagra may be helping me, but I will have to wait to see the results of Dr. Goldstein’s testing later this month to understand if that’s actually true. I’ve noticed that there has been a mild improvement in my nocturnal erection activity, and that it is less difficult for me to achieve erections during the day and evening while I’m active (but it still requires direct contact); however, I don’t really know if this is a result of regular Viagra usage, or if it could be the result of my body repairing itself in other ways. Presumably, my brain, spinal cord, nerves, or whatever it was that was messed up by Propecia will slowly self-repair over time, so perhaps that could be the reason rather than the Viagra.
I am presently consuming these medications, at these frequencies:
Clomid (Clomiphene Citrate) 50 mg, #3 per week
Arimidex (Anastrazole) 1 mg, #3 per week
Cabergoline 0.5 mg, #2 per week
Viagra (Sildenafil) 25 mg, #1 per day (PM, just before bed)
Naltrexone 50 mg, #1 per day (PM, just before bed)
Testosterone 1% Cream, applied #1 per day to genitalia just before bed
One thing I can confirm is an improvement in the function, appearance, and feel of the tissue structure of my penis. The fleshy shades of pink are returning, although the coloration is still patchy; and, although the dents and wrinkles are still there, I think they are somewhat less pronounced, perhaps because the improved coloration may be masking them. Overall, my penis still looks relatively unhealthy compared to how it was before Propecia; it still does not look “full” or “robust” as it once did, but for sure it is much better looking now than it was right after this episode with Propecia began back in January 2010. The responsiveness of my penis to contact has also improved; for a long time after Propecia, it would require an extremely intense amount of stimulation to achieve an erection that I would lose immediately after the stimulation was discontinued, but now the amount of stimulation required is less and my response to that stimulation is more “linear” and predictable than it was before, so that now I can obtain an erection using less effort and can maintain it with a more moderate level of stimulation. But regardless of how hard I may try, I am unable to get my erection as hard or to last as long as I could in the past (before Propecia), unless I use a medication such as Viagra and/or injectables to help me. The really significant development here is that I can now achieve a certain level of erectile function without the need for direct stimulation; even though it is hard, I am now able to make my penis respond to some of the thoughts that I prompt in my head, so at least now the brain-to-penis pathway isn’t entirely broken.
The health of my body has remained stable since my last posting. By mid-summer 2011, I had hit a respectable fitness level after several months of intense training, which was mostly comprised by weight lifting (4 times per week) and running (2-3 times per week). I dramatically reduced the amount of body fat that I had, while simultaneously increasing my muscle mass and strength to levels that were comparable to where I was at before Propecia. However, since reaching that highpoint last summer, I’ve since cut back on my fitness routine, mainly because the other commitments in my life are using up a lot more of my time than they were before; I’ve gained some body fat and lost some muscle as a result, but I’m confident that I could get back to where I was last summer if I got serious about exercise again. I have slightly more significant issues with acne and increased hair loss relative to the past, but otherwise everything else with my body is the same as it was for me before Propecia.
Similarly, the function of my brain and my mental health has improved since last summer, or at the very least has remained stable. I am becoming increasingly more capable of functioning at work, as my memory is improving and my ability to think has recovered quite a bit, while I am also less likely to experience the bouts of depression that would leave me sitting around unproductive for hours at a time. One thing I do continue to struggle with to a certain extent is anxiety and related emotional problems, and these things tend to impact my ability to sleep; I cannot predict when I will be able to fall asleep on any given night, or how well or how long I will sleep that night, and hence I cannot predict when I will wake up the following morning and what I will feel like after I do wake up. Part of the sleep problem is, in my opinion, also tied to my sexual health; I’ve come to believe that the absence of sexualized dreams and the weakness of nocturnal erections impairs the quality of my sleep, since I think in healthy men these probably act as a “pacifier” to control anxiety and to keep him relaxed during the night, and this is a moderating influence that I do not have. Death anxiety is also an issue that I experience; for whatever reason it starts to kick in as soon as I shut the lights off and climb into bed, it eliminates the sense of relief that someone might otherwise experience after turning in at night after a long day, and makes the time at which I finally fall asleep that night that much more unpredictable.
In terms of my social attitudes, I am also behaving more normally now than I had been immediately after getting hurt by Propecia, and better than I was last summer as well. Now that the major time and money pit of searching for medical help, getting tested, going through the treatment program, etc. is mostly behind me, now after two years have passed I finally have time to go out and make a serious effort to try to enjoy myself. I am still somewhat inclined to avoid large gatherings of people, especially at late evening and nighttime events such as parties, but at least now I can function more appropriately whenever I do attend these events. It took me a little while to get used to interacting with people socially again, but now I can communicate more comfortably and I am less likely to be flagged as “different” by the average person that I bump into on any given night, although for sure I am identified as being more awkward than average. Unfortunately, without a doubt, I still have a tendency to bug out if a seemingly interested woman approaches me to talk. It is a shame that I blow these opportunities, but at least now I am able to tolerate remaining in the room with them and can carry a conversation; I must remember that this is an improvement over where I was before, even if I do fail to dive into the conversation and take it further. The underlying cause of this issue is the anxiety that I have about my sexual performance, the extent of the impairment of which I do not qualitatively understand, and also the relative absence of sexual attraction that I feel in general; sex does not drive my motivations to interact with women, and I worry that I could be embarrassed if my sexual performance turned out to be inadequate (without the use of Viagra and/or injectables, which I never carry with me), so it becomes uncomfortable for me if I am approached for reasons of physical attraction. Even if it is clear that sex is not an immediate prospect, the possibility that it could only be a month or two away is enough to deter me from allowing her to get any closer to me.
More than anything else, the issue that is really killing me right now is the libido dysfunction. I always enjoy the company of a decent girl and when I’m with one I want to keep her around, but I hesitate to seal the deal and proceed past that point simply because I do not have a desire to pursue a physical relationship. Sexual performance, although a concern, is not driving this problem; after a couple years of healing, I am now confident that my performance would be at least passable if I swallowed a Viagra tablet when she wasn’t looking, but there is nothing that I can do that will elevate my libido sustainably and unless that happens things won’t fall together naturally. I find a woman that I like, or bump into one that likes me, but then I waffle and hesitate to make a decision, the moment to make a move comes and goes, and then the moment gets cold and nothing happens and I am left kicking myself over the experience later. After having been through this more than once over the past couple of years, I am starting to realize that I may have to essentially fake it so that I can move past these issues to ultimately get what I want; I don’t want to be lonely forever, but if I don’t get myself past the issue of sexual attraction then that’s exactly what will happen. All this time I’ve essentially been waiting for my libido and interest to recover to “acceptable” levels before I seriously considered a relationship situation; but now, I think the best thing for me to do is to just pick a pretty girl that treats me well and to ask her out to lunch. Maybe later, after an extended period of time after I’ve entered a relationship, my sexual health will recover and then I will be able to fully enjoy that pretty girl; or, maybe it will never recover, but then at least I will be with someone that I have experience with and won’t be lonely, and perhaps I will have learned to function so that sexual experiences are at least no longer a chore.
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Aero, thanks for posting in such a detailed manner. You’re story helps me clarify some things that happen with me but I no longer am capable of putting my finger on verbally, so to speak.
I’m curious, do you feel the Clomid/Arimidex combo are helping your cognitive issues? Not just confidience of not being hypogonadal, but genuinely - significantly - affecting your mental state?
Can you update us on your sensitivity testing with Goldstein yet?
Actually, yes my belief is that the Clomid/Arimidex are presently helping, or at least have helped, to address the cognitive issues. Blood tests continue to revalidate the fact that my estradiol is right in the middle of the normal range for men, and the fact that my testosterone levels are well above two sigma high (two sigma is the lower and upper limits of the “normal” range defined by the laboratory). I’m not sure what would happen to my blood chemistry if I were to discontinue these medications, but that is besides the point relative to your question.
My feeling is that whatever damage Propecia did to my mind was at least in part driven by the way that, acting upstream, Propecia blocks the conversion of several of the various testosterone derivatives into several of the various neurosteroids that are utilized within the brain. Therefore, at the very least, I believe it can’t hurt to now maintain my testosterone at a higher level than may be theoretically necessary according to what an endocrinologist might tell you, when looking at your blood test data independent of anything else. An analogy might be to think of putting fertilizer on a weakened plant in order to help it recover; clean dirt, sunshine, and water may be sufficient, but the fertilizer will act to speed up the process. My hope is that maintaining elevated testosterone levels will help me in a similar manner. Obviously, I do not have a scientific study to support this rationale; but, I will say with certainty that at least empirically my observation has been that the Clomid/Arimidex combination have been the only medications that I’m absolutely sure have helped me in a really significant way. I’ve been on naltrexone, buproprion, ropinirole, and several others, and although I did experience several of the known side effects from these medications, I am not really sure that any of them has provided me with any long-term benefits.
Basically, the status right now is that I consider myself essentially cured of the adverse cognitive issues that were brought on directly by Propecia, excepting only the ongoing problems which I believe are derived from my still somewhat distressed emotional state and my frustration with my ongoing sexual dysfunction. On many occasions, I feel slowed and mentally lethargic, but these incidents are generally also coincident with feelings of depression and/or anxiety and/or loneliness. When I’m in close proximity to trusted friends, the depression, anxiety, and sense of loneliness tend to be suppressed, and at those times (such as when I’m at work) I’ll feel essentially “smarter” and more apt to store and recall information. But then again, sometimes the issue of my sexual dysfunction becomes highlighted, such as when women are around or come up as a topic of discussion with my friends, and on those occasions I sometimes find myself struggling to fight off depression and I subsequently begin to sink into another emotional slump.
My belief is that my remaining emotional issues are mostly derived, if not entirely derived, from the still persistent damage to my sexual health. It really stinks to have to live like this, now that I truly understand that I won’t live forever and that I continue to advance towards my ultimate demise as I age each day, while knowing that during each of those days between now and the moment of my death in old age I’ll never truly enjoy a sexual experience again. I have a really bad habit of allowing this train of thought to run wild in my mind, and whenever it does, it drives me into an incredibly dark place dominated by a sense of depression and overwhelming fear that simply cannot be described. As you can imagine, whenever this happens it is hard for me to perform as a highly proficient aerospace engineer for my company.
In regards to the sensitivity testing that I had performed in Dr. Goldstein’s office a few weeks ago (my third sensitivity test), according to him, there has actually been an improvement in the sensitivity of my genitalia since the last time that I had visited his office just over a year ago (my second sensitivity test). My sense is that, at least in part, it is the belief of his and his office staff that the direct application of the testosterone cream to my penis each evening before bed had helped to bring about this improvement. Of significance is the fact that, eight months prior to my second sensitivity test a little over a year ago, I had my first sensitivity test performed during my first visit to Dr. Goldstein’s office. In the eight months between my first and second sensitivity test I did not use the testosterone cream, and there was no improvement in sensitivity; but, between the second and third sensitivity test I had begun to use the testosterone cream, and my third test seems to have confirmed that there was an improvement between the second and third test. I’ve tended to become an increasingly cynical person as my life continues to progress while the post-Propecia sexual dysfunction issues appear to remain persistent, but I will concede that the results are encouraging. I did observe that Dr. Goldstein and his staff seemed to be legitimately surprised and impressed by the result.
This was Aeros’ last visit to the forum.
If you ever come back, let us know how you are.
I apologize for not updating my thread more frequently. Unfortunately, I have very little to report upon with respect to improvements associated with my post-Propecia issues, and so there is not much of a reason to update the forum on my situation more frequently than every six months at most.
In summary, I still have significant sexual dysfunction issues, while the issues with my mind and body have by now been entirely eliminated as far as I can tell. I still consume a few prescription medications just to make sure that my hormonal levels are maintained; it’s not clear that I actually need to continue to take them, but I have been doing so because they are cheap and they provide me with the security of knowing that I certainly will not end up in another mess repeating expensive blood tests and dealing with the stress of possibly having to get into a cycle of adjusting my medications.
My medication schedule is as follows:
Clomiphene citrate 50 mg #3 per week
Anastrazole 1 mg #3 per week
Cabergoline 0.5 mg #2 per week
Viagra 25 mg #1 per night before bed
Testosterone 1% cream, ~1 mL applied per night before bed
As I described earlier, clomiphene citrate and anastrazole are the two hormonal medications that I continue to consume in order to maintain my estradiol and testosterone levels, although I’m not certain that I really need them at this point. I began consuming cabergoline so that I could reduce the level of prolactin in my body and this was accomplished successfully, so it may be the case that I no longer need to continue to take this medication either. Over the coming year I expect that I will become more open to the prospect of cutting each of these out of my routine. Blood tests will be required to verify that my body is performing OK without the aid of these medications.
The other two prescriptions are intended to improve my sexual health. Viagra, as it is being prescribed for me, is designed to help improve (long-term) blood flow to my genitals. I believe the idea is that, with long-term consumption combined with nocturnal erections, that the additional blood pressure in that area of my body will gradually open up the arteries and allow them to carry larger quantities of blood to my penis, thus improving my ability to achieve/maintain erections for sexual activity. Testosterone cream, applied directly to my penis each night, is intended to improve the sensitivity of my penis, thus improving my ability to enjoy sex or perhaps to improve my motivation to seek it. It’s not obvious to me that either of these medications are helping me; however, periodic testing at Dr. Goldstein’s office in San Diego seems to indicate that they have been helping, so I interpret this to mean that the improvement is real but also that the rate of improvement is too slow for me to notice it.
Libido is the critical weakness in my sexual health at this time, and to my knowledge there is no medication available to address it. Between the BiMix shots and the Viagra that are available to me, there are no concerns regarding my ability to achieve and maintain an erection for sex. However, obviously, without a sense of desire for sex it is difficult to motivate myself to seek it, and quite frankly even if I did get that far, I think I am not nearly as likely to enjoy it as I would have enjoyed it before my experience with Propecia began.
Basically, my health situation has stabilized as I’ve described it above. The next thing for me will be to try to get myself back into dating and trying to form a personal life. Yes, sex is not a motivating factor, but I am tired of being the only single person around amongst my coworkers and friends. I feel a lot of peer pressure to make something happen. Almost everyone else I know are married, and the few that aren’t married have serious girlfriends, and the fact that I am single and am not even looking really gets the attention of people. I’ve kept my health issues a secret, so they seem to believe that I am probably just extremely shy or perhaps maybe have some weird antisocial issue that I haven’t told them about. Correcting my social standing will be my next achievement milestone over the next several months.
Hey man, thanks for the update.
I’m glad things are somewhat stable. Been wondering about cabergoline myself. It might help my delayed ejaculation.
I hope you get out there and date. Give yourself a chance to meet someone that you wouldn’t mind sharing this with when the time comes. Just don’t put pressure on yourself or feel bad about being single. It sounds more like a choice you’ve made than a situation you’re stuck in. No big deal.
I think you’ll have success maintaining things when you do get around to reducing the prescriptions.
Thanks again for the update.
Have you tested for Thyroid Antibodies, and Gluten intolerance? If not then please go for it.
Yes, absolutely. I’m planning on approaching dating in a cautious and conservative way. The larger concern in the near term is to just get used to interacting with women socially again. Obtaining an actual girlfriend I suppose is a longer term objective and isn’t really a concern of mine at the moment.
I’ll just have to remind myself that there are lots of men out there with sexual dysfunction, and for most of them their issues were not caused by Propecia, and they’ve managed to maintain a personal life despite those complications. The way that I look at women has changed considerably as a result of this unfortunate experience; adjusting to that new outlook has been difficult, but now that (I think) I’ve finally managed to accept it with the expectation that I’ll be like this for the rest of my life, my hope is that I’ll get past the anxiety and depression that I often felt because of it and to just try to enjoy whatever I have the opportunity to experience.
There’s always hope, man. Take this dude for example: viewtopic.php?f=22&t=3892 He utterly destroyed his hormones with a cocktail of Fin and a bunch of other stuff. It took 7 years, but he eventually got back to normal. The body is capable of amazing things. Believe in the power of the body to heal itself. It may take a looooooooong time, which really sucks and isn’t fair, but there’s always hope of getting better. I’m only 4 months into this whole thing and it makes me really really depressed and angry and bitter thinking I may be like this for years, missing out on the rest of my 20s, maybe even decades, but I just try not to think about it and hope that the improvements I’ve seen will continue.