Topic
Propecia ruined my life
AeroEngr December 5, 2010 at 5:41 pm
I was a healthy and athletic 24 year old man (no chronic health problems or psychological issues whatsoever) who began taking Propecia for the treatment of hair loss early in the afternoon on January 22nd, 2010, and almost immediately began to experience the onset of symptoms that included brain fog, confusion, and depressed behavior. The next day, I woke up with a plethora of very noticeable sexual side effects, and from there, began to feel progressively weaker physically, mentally, sexually, and emotionally over the course of the next 4-5 days (the most intense drop was during the first couple of days).
After the first 4-5 days, I seemed to stabilize at this low point; but, after a couple more weeks had past, it became obvious beyond argument that my chest and shoulders were softening and descending considerably and that they were wasting away at a precipitous rate (and so were the rest of the muscles in my body). At that point, it was only a matter of time before I quit the drug because the severe declines I’d experienced grossly outweighed any benefits I would have gained even if I had entirely re-grown all of my hair. Putting all of the physical, mental, sexual, and emotional performance issues aside, just the cosmetic trade alone of the poor appearance of my body for the benefit of a full head of hair was completely unacceptable.
Despite all of these issues, I continued to take the drug anyways, partially in the hope that I would adjust to the drug and the symptoms would alleviate (per the manufacturer’s suggestion), and partially because I was curious to see if the drug would actually do something positive and grow hair on my scalp; but, after two additional weeks, the depression and anxiety and the physical, mental, and sexual performance deficiencies got to be too much to bear as the quality of my life continued to deteriorate until it finally reached the point where it was just impossible to tolerate living like that anymore. I had been pushed to the absolute limits of my psychological and emotional endurance.
Clearly, I had to stop taking the drug, which I did discontinue on February 26th, 2010, fully and excitedly expecting that all of the side effects would completely subside within a few days and that I would be back to the way I was before, but the side effects did not alleviate. Outside of a reduction in the most extreme psychological issues (brain fog and depression), and a minor (~<5%) physical performance bounce, I continued living with basically the same physical, mental, sexual, and emotional performance deficiencies that I had while I was on the drug.
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Several of the side effects began within minutes to hours of beginning the drug, while the others took a bit more time to develop (from days to weeks to months) depending on the problem. The issues listed below are presently ongoing, with varying degrees of severity with respect to my condition while I was still taking Propecia, and some also with varying degrees of severity during the time period since discontinuing the drug, accounting for the severely reduced quality of life that I’ve been left with since ending the use of Propecia:
Problems continuing after quitting on February 26th:
*** Loss of libido ***
>> Essentially zero libido; complete absence of any sexual desire towards women, never “horny”
>> No sexual thoughts or fantasies at all; no sexual pressures, thus no drive to release any sexual pressure
>> Little or no response to sexual stimuli; no arousal from sexual images, or even from sexual types of contact
>> Apparent loss of sexual dreams during sleep; my dreaming activity is very hollow and empty
*** Erectile dysfunction ***
>> Difficult to obtain erections, difficult to maintain, doesn’t get as big or hard, goes away very quickly
>> Loss of spontaneous erections and associated arousal (i.e. random arousal while at work, watching TV, etc)
>> Loss of nocturnal/morning erections; difficulty sleeping due to lack of nocturnal erections and sexual dreams
*** Changes in my penis ***
>> Flaccid penis is shorter and narrower than before; erect penis is also shorter and narrower than before
>> Tissue changes; feels like large rubber band constricting it, and a general “stiffness” of flaccid penis
>> Penis is colder; reduced blood flow to the penis (head of penis now blue/white, not flush pink as before)
>> Loss of sensitivity, especially for pleasurable touching; rubbery feeling, head of penis is cold and clammy
>> Tendency of penis to retract into body; often have a “just swimming in cold water” appearance to penis
>> Attachment seems different, urination feels different, penis doesn’t feel like it’s entirely mine anymore
*** Changes in my testicles and scrotum ***
>> Reduction in size of testicles and scrotum; loss of scrotum fullness, sensation of overall emptiness
>> Scrotum and testicles always feel colder than before; reduced blood flow to entire genital region
>> Loss of sensitivity, especially for pleasurable touching; entire package has a dead, rubbery feeling
*** Overall sense of detachment from my genitals ***
*** Reduced quality of orgasm and ejaculation ***
>> Reduced volume and quality of ejaculate (now like clear “spit”, than off-white “cream” as before)
>> Reduced ejaculation velocity (used to shoot out from my penis; now just runs out the end of my penis)
>> Reduced pleasure from orgasm experience; “just happens”, no real blast or sense of satisfaction at all
>> Some semen fluid begins to run out from my penis before I achieve the orgasm (like a runny nose)
>> Only feel able to do it once a day at most; used to be easily capable and eager to do it again within an hour
*** Muscle loss & body fat increase ***
>> Massive loss of body strength and muscle mass (legs, thighs, arms, shoulders, chest, back, abdomen)
>> Upper body strength has been especially impacted (including abdomen and lower back)
>> Chest and shoulders have been noticeably reduced in mass, and have descended to a lower position
>> Daily gym visitation does not help; my body is not responsive to the strength training, it only makes me ache
>> Body fat under my nipples and across my chest; increased amount of body fat in atypical places
>> Accumulation of layer of body fat covering the rest of my body, but especially around my waist
>> Overall reduction of body density throughout entire body; softer, less lean muscles; loss of muscle tone
*** Fatigue ***
>> Quickly run out of breath during aerobic exercise; cannot run, bike, swim, or row nearly as well as before
>> Routine aerobic exercise doesn’t improve my performance; it just makes me ache for several days afterword
>> Trouble finding the energy to get organized, work, have fun, be productive, and perform routine chores
>> Always tired, and get exhausted quickly; I simply cannot “go the distance” like I could in the past
>> Effective workday reduced; used to be able to work > 12 hours no problem, now get tired in under half a day
*** Suspected loss of bone mass and shrinkage of my skeleton ***
>> My shoulders don’t feel as broad, and I don’t feel as tall as I used to feel; sensation of shrinkage of my body
>> The supporting structure for my chest and shoulders seems to have shrunk and repositioned
>> I feel much smaller in all regards; my skeleton feels thin, weak, and lanky in comparison to the past
*** Pain ***
>> Testicular pain; aching sensations during the day, and also more sensitive to uncomfortable touching
>> Aching of muscles and joints and lack of mobility (including upper body, arms and shoulders)
>> Difficulty recovering from exercise; always sore for days, and never feel like my body has been “broken in”
*** Cold intolerance; my body feels cold and I easily get a chill (I wore a jacket all summer long) ***
*** Memory problems ***
>> Severe memory impairment, especially short term memory; have totally forgotten past lessons-learned
>> Constant forgetfulness, blanking out; daily schedule changes are problematic, I may forget where I should be
>> Often forget to attend meetings at work, and cannot recall the events and results of meetings
*** Cognition impairment ***
>> Severely diminished acuity and comprehension; hard to understand and solve even simple problems
>> Slowed thought processes, difficulty processing information; tough to get organized and get the job done
>> Difficulty paying attention to conversations; inattentiveness, difficulty focusing on events and concentrating
*** Speech impacted ***
>> Have a tendency to slur speech and mumble; tend to revert to grunts and other means of communicating
>> Impaired ability to choose words, form complicated sentences, and speak as eloquently as I could in the past
*** Sleep problems ***
>> Do not sleep as well as I used to sleep; rarely dream, never have any sexual dreams, wake frequently
>> Poor benefit from sleep; even though in bed for sufficient time, often have trouble starting the next day
>> I do not have a regular sleep routine; I often oversleep > 10 hours, and also often under-sleep < 5 hours >> Now sleep partially clothed (used to sleep nude); lack of nocturnal erections/cold penis wakes me at night
*** Emotional changes ***
>> Emotional detachment and blunting, overall flatness to my personality, total carelessness
>> Basic emotions play less of a role in my life; reduced feelings of empathy, compassion, caring, etc
>> Frequently moody, frustrated, and irritable; I feel like I am on a hair-trigger to fight or argue
>> Sense of pleasure and enjoyment has been completely stripped from my life
>> Non-sexual activities have lost their appeal as well (playing tennis, walking on the beach, TV watching, etc)
>> I have completely isolated myself socially; social activities with friends are now a chore, so I don’t do them
*** Drive and motivation changes ***
>> Complete loss of career motivation and personal ambition; have lost the ability and desire to thrive in life
>> Very subdued behavior in comparison to the past (no longer outgoing at all; now very reclusive and shy)
>> Intimidated by attractive women; feel inclined to hide or avoid them, instead of pursuing them like before
>> I feel very passive, fragile, and vulnerable (I feel like an easy target to be pushed around by other men)
>> Not really sure what I should now do with the rest of my life; there doesn’t seem to be a plan anymore, or any reason to pursue one; I am basically left totally sidelined in life, my life is in limbo waiting for a recovery
*** Increased levels of anxiety in my day to day life; sometimes suffer from feelings of confinement and hotness ***
*** Depression is a persistent problem; more vulnerable to feelings of sadness and hopelessness, unhappy with myself ***
*** Overall sense of weakness; less robust, and general feeling of increased vulnerability to illnesses and getting sick ***
Recently appearing issues (these began in early August, 2010):
*** Dent in my penis (noticed it in the shower about a week after last trying Levitra; had tried Levitra a few times beginning mid-July to help with sexual performance deficiencies) ***
>> Suspect it may have been a result of Levitra usage, but am not sure it wasn’t already there earlier
>> Definitely did not exist prior to Propecia; and, believe it didn’t form for months after quitting
>> Levitra did not help out with sexual dysfunction issues at all, didn’t address the root cause of problem
*** Pains in penis ***
>> Burning sensations near the head of my penis; I tend to associate these with the appearance of the dent
>> “Pins and needles” sensations throughout my penis; began later than dent, don’t think these are associated
>> Pains in penis more prevalent and likely to occur after attempting sexual activity, erection, orgasm, etc
*** Shooting testicular pain (rear of testicles, into body); intense and momentary attacks of pain ***
*** Pain and aching sensations in the anal area of my body ***
>> Pain seems to come from inside me, varying in depth into body; feels like my anus/rectum is the source
*** Periodic muscle spasms in my pelvic/bladder region; directly between belt and penis, under the skin into my body ***
Recently relief from some side effects (these began in early-mid September, 2010):
*** Disappearance of the muscle spasms in my pelvic/bladder region; these were directly between my belt and penis ***
*** Return of some nocturnal erections (not nearly as frequently as before, nor are they anywhere near as firm or large) ***
*** Reduction of some of the “swimming in cold water” penis effects; penis has loosened up a little bit (no more knot) ***
>> Not associated with any appreciable return in sensitivity, fullness, or other performance improvement
*** Much of the anxiety and depression has been mitigated, though I’m still very anxious to make a recovery ASAP ***
>> Adjusted somewhat to lower quality of life; have gotten over the shock of having my life destroyed, some emotional acceptance, etc
>> Finally making contact with doctors who may be able to treat me makes me feel hopeful for the future again
I’ve looked around the other forums on this site, and have found another post regarding persistent Propecia side effect issues under the section “Erectile Dysfunction (ED)” that is titled “Propecia and erection problems” and I would have to say that I strongly disagree that the section “Erectile Dysfunction” is the appropriate location under which to host this discussion. Taking into account the other ways that this drug has adversely impacted the quality of my life, I would have to say that erectile performance difficulties (though indeed distressing) are the least of my concerns at the moment. I elected to post my experience in a section covering male hormonal problems because I felt that it gave me more freedom to discuss the full scope of my problems; however, I do feel that the most appropriate action is to have the admin create a stand-alone section called “Propecia Side Effects” and move all Propecia-related discussion to that area.
Like the user ‘Horndog’, I sought treatment for these issues by doctors who are aware of persistent post-Propecia side effects and are receptive to treating me for it (as it turns out, these doctors are few and far between). I am also under the care of Dr. Irwin Goldstein in San Diego, who examined me in his office with his diagnostic equipment and reviewed the data I’ve collected on my hormone levels since I quit Propecia (I did not get blood tests for hormone levels before starting Propecia or while on Propecia, per my general practitioners assurance that I did not need to do so – advice which I now heavily regret accepting).
Several blood tests have revalidated the fact that I have low Testosterone (free and total), low Dihydrotestosterone (DHT), low LH, low FSH, and high Prolactin. Some of my other hormone levels are within normal range, but are near the edges of these ranges (I am borderline hypothyroid, for example).
Dr. Goldstein performed thorough diagnostic testing on my genitals. The testing revealed that my penis has increased perception thresholds for hot and cold stimuli (I need hotter and colder stimuli, respectively, than an average man in order for me to be able to begin to feel it). In addition, the testing also revealed that I have reduced arterial blood flow to my penis (roughly half what it should be for a man my age, according to Dr. Goldstein).
A couple weeks ago I began the drug therapy prescribed by Dr. Goldstein (Clomid, Cabergoline, and Arimidex) to try to correct my hormonal problems. At the moment, I believe the drug treatment is beginning to help me cope with many of the ongoing Propecia side effects; but unfortunately, my improvement thus far has been very marginal, as I presently still feel much closer to “the floor” I hit after taking Propecia than I was to “the ceiling” before taking Propecia.
My plan is to first correct my libido, muscle mass, and the rest of the post-Propecia issues by dealing with the hormonal problems before I consider any other options to improve the quality of my erections (i.e. revascularization surgery to improve blood flow to my penis). I did not have any difficulty achieving or keeping erections before starting Propecia, thus I believe (or perhaps hope, actually) that once a healthy hormonal profile is restored my erectile performance will also be restored.
I want to get my life back on track as soon as possible, but I would also like to try to avoid surgery if I can (and again, I want to reiterate that erectile difficulties are the least of my concerns at the moment with respect to my ongoing Propecia side effects).
By the way, I have not yet registered to become a member of the website “propeciahelp.com” that is dedicated to this topic, but I will do so soon.
Just posting again to follow up and let you all know how I’m doing. I’m still taking the Clomid, Cabergoline, and Arimidex to manage my endocrinology. In addition, I am taking 25 mg Viagra daily to try to increase genital blood flow and libido. I also visited Dr. Goldstein in San Diego for a second time earlier this spring and was taught how to give self injections into my penis to induce an erection directly.
After five months on the Clomid, Cabergoline, and Arimidex, I am finally in a position where I think I can say that I will almost definitely recover fully from the extreme body wastage that I experienced last year. I continue to suffer from intermittent bouts of depression (basically just being bummed out about life) but these are becoming less frequent with time, as I can now see my body figure beginning to recover and just generally I’m more hopeful about my prospects for a recovery than I was a year ago. I also continue to be prone to the attacks of anger and frustration that I began to experience after I discontinued Propecia and suddenly realized that the side effects were not going to go away, but again, these are becoming less frequent and less intense with time. I still have some cognitive impairment, and I think this shares the same root cause as the cause of the depression; hopefully with time, the depression will go away and so will the cognitive impairment along with it.
On the issue of sexual side effects, there has been little improvement to date. I have, however, begun to experience notable relief from the prostate/anal and genital pains that I had been living with this whole time. I am pretty sure the root cause of those pains had to do with the prolonged period of low testosterone being insufficient to support the health of these sexual organs (thus they began to atrophy and became less robust and more prone to fatigue and pain), and also with the body wastage in general because I know that my pelvic floor must have become weakened along with the rest of my body as everything wasted away (the pelvic floor is the part of your body that supports your genitals and the surrounding organs and basically keeps everything in its proper place in your lower body). I still have this nasty dent on the lower-right side of my penis (still associated with some minor pain), a less significant defect on the upper-right side of my penis which is basically a series of unattractive wrinkles similar in color to the dent, and some weird pigmentation on the head of my penis including white spots and a lack of pigmentation in general (less pink, now looks a bit more purplish than in the past).
Unfortunately, I remain quite impotent as I cannot get an erection induced via visual or auditory stimulation, and cannot induce an erection via soft/gentle touching and stroking; the only way to “get it up” is to use intense and direct stimulation on the penis but unfortunately this sort of rapid stimulation is impossible to maintain in a vaginal penetration scenario. So at the moment, if I wanted to engage in sex with a partner I would need to make use of the penile injections and/or take heavier doses of the Viagra than what I have been taking (I’m still trying to figure out the appropriate dosages of each that I need to take in order to make this happen). In addition, as far as I’m aware, I remain completely flaccid throughout the night (no nocturnal erections), and I do not experience any sort of spontaneous arousal during the day.
My libido is way down and is nearly zero, however, with my testosterone back up my aggressiveness is returning and with the body wastage going away I am feeling much more confident about myself and have become more willing to associate/socialize with women because I am less embarrassed about my situation and feel less shame for my predicament. I think that if I were able to achieve an erection normally (maybe even if I used the penile injections), regardless of whether or not I think would enjoy sex (reduced orgasm, genital numbness, genital detachment, emotional detachment, etc, are all still problems for me), I would pursue it merely out of a desire of mine to have control over my life again.
Right now, I am nominally favorable towards pursuing a relationship with a girl because I know I would enjoy their companionship again (just having lunch with one again would be a milestone for me), but then again, it is also true that it could easily develop into a very frustrating situation for me, as I would be very hesitant to go past second base with her (and hence to get together with any girl at all) because I know that my sexual performance is severely compromised and I am totally unsure of how a situation like that would play out. I know for sure that I can get an erection if I use an injection; however, it just isn’t the same for me because there is an absence of arousal and because I know that I need to have a syringe with me in order to obtain an erection, that I cannot be as open as I would like to be sexually because I will always worry about having to have “my erection kit” with me at all times. And of course, finding a way to hide a syringe on you during a date, and then to use it without her knowing, is going to be exceptionally difficult.
At the moment, I am taking no other drugs to treat me for the post-Propecia side effects that are ongoing. However, I have been talking to Dr. Goldstein on the subject of what else we can do to deal with the hyposexuality disorders that I continue to experience, and the drugs that came up for discussion included bupropion, symmetrel, naltrexone, oxytocin, and yohimbine. I will likely begin the usage of one or more of these other drugs soon. We also discussed the utility of taking something like Ritalin or Adderall to aid my ability to focus on “the moment,” but at this time, I am not agreeable to trying these two drugs because I do not think they would be addressing an identifiable problem with my sexuality.
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 the persistent (greater than 4 hour) erections that I had been experiencing 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 later. 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 seemed somewhat ridiculous to have to go through the trouble of sticking a needle in my 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 early 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.
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