Before Propecia
It all started back in October 2002, but first a brief history. I started losing my hair in my late teens and early twenties, but it has been a slow decline rather than heavy shedding. I tried minoxidil, but because my hair was long it always made it look messy. When I heard about Propecia I thought, what a great idea. Take a tablet each day and that's that. It really did look like the miracle cure we had been waiting for.
Taking Propecia
I started taking Propecia in October 2002. I got it from the internet because, as far as I knew, it wasn't available in the UK. I contacted Merck in New Zealand, which is where my batch came from, and they confirmed it was legitimate and not a cheap counterfeit. I showed the tablets to my doctor. Although he hadn't seen Propecia before, he asked me a few questions about my general health and said I would be OK to take them if I wanted to.
I read the note about 2% of men suffering a lowered libido, and also that this returned to normal on stopping Propecia, and went away in men who continued to use the drug. I wasn't dating at the time, so I really did have nothing to lose. I just figured that if I met someone I would stop using the drug, and if it meant I would masturbate less I really didn't care. I took the tablet each day for about five and a half months.
The drug had a huge effect on my hair. It grew a lot quicker and a lot thicker. All my friends noticed, including my stylist, and I was very happy about the positive effects.
Stopping, and what happened next
Then I met someone I was really excited about. I immediately stopped taking Propecia and we started dating once a week. After a couple of weeks I realised things weren't quite the way they should be in the trouser department. I tried to masturbate but I could not get an erection, even after a long time trying. Previously I had never had a problem and had always been quite a horny guy. I put it down to finasteride and thought that maybe I needed to give my body a little longer.
After more time there was still no change. I became concerned and started searching on the internet. My worst nightmare was staring at me on the computer screen. Not one, but many cases of finasteride-induced impotence. Men who had not recovered even three or four years after stopping finasteride. I was completely distraught. I could not sleep, I could not eat, and I could not think about anything else. I cried and cried many times, and the angst was almost unbearable.
Seeing the doctors
I went to see my GP and told him everything. He was very understanding and made me an appointment with a psychosexual specialist. I broke down in front of my girlfriend one night and told her everything. She was incredibly understanding and said she would stick by me no matter what. This was a huge relief, and I was able to sleep and get back to some sense of normality.
The specialist convinced me it was all in my head. He gave me some exercises to do with my partner, and also Viagra to help me get over the problem. I believed him and practised “sensate focus” with my partner, and eventually used the Viagra. I did this over a three-month period.
Still suffering from impotence, I decided after more research that the answer might lie in blood tests. I believed that Propecia had upset my hormone system and that something was badly out of balance. I went to see an endocrinologist and explained my symptoms:
- No morning erections and no daytime erections.
- Great difficulty getting or keeping an erection for intercourse or masturbation.
- Watery semen.
- I felt very passive.
- My penis felt smaller, wrinkly and less full.
- My testicles hung lower and felt less full. Previously they would fill up if I didn't masturbate for a day or so.
- My penis felt “disconnected” from my brain.
- Sometimes my erections stopped short and my penis would arch to the left.
- An increase in tummy fat.
He did some basic blood tests and told me everything was normal, except that my testosterone was slightly below the minimum of the normal range. He said that maybe I was a low-testosterone male, and that I could go on testosterone replacement therapy (TRT), either injected or as a rub-in gel. I didn't like the sound of this, as I would have to do it for the rest of my life. I also discovered that it would shut down my testicles, and I would not be able to have children while on it.
We agreed to leave it another six months and see how things went. We did more tests, and this time my testosterone was slightly above the minimum of the range. The endocrinologist was only open to basic TRT, and was unwilling to try to restart my system or do any further tests to find out what was causing the problems.
As I didn't agree, he referred me to a professor of endocrinology. I went to the appointment with great hope; after all, the person I was seeing was a professor. I came out of the appointment and cried. He didn't believe me, said it was all in my head, and told me I should stop doing research on the internet. He wouldn't treat me, as everything was within the “normal” ranges in my last test.
Where I am now
So this leads me to the present day: three doctors who don't believe I have a problem, all unwilling to treat me, believe me or even investigate. I quit Propecia in March 2003 and I am still suffering side effects. I wrote to Merck a few times but they were not able to help. Although things have improved slightly, I am far from normal. Not only is my quality of life suffering, I am now increasingly concerned for my future health. No one knows yet what Propecia does to cause this condition, and no one knows what the future consequences are.
Struggling with the symptoms is one thing; ignorant doctors just make the uphill struggle ten times harder.
The truth is that there are many men out there whose lives have been torn apart by a drug that was supposed to stop their hair falling out. I have heard of cases where finasteride was taken for as little as one month. The damage appears to be irreparable by the body alone, and it is not yet known whether it can be repaired by treatment.
If you are considering Propecia, I would urge you to think again. Your health is not worth it.
If you are going through something similar, you are not alone. The Post-Finasteride Syndrome Forum is a good place to talk to others, and you can contact me directly.