Three month lurker, finally time to tell my story

So I got taken to the cleaners like all of you guys on this drug. Began taking it ten years ago, and I had the “crash” in April 2014 while I was still on it, and continued to take it until January. All the while, I visited doctor after doctor to figure out why felt so poorly, and only when I googled finasteride and side effects did I realize the scope of this problem. My crash consisted of the immense fatigue, rank smelling stools and diarrhea, and insomnia that many of you have mentioned. I also began having the unprovoked panic attacks and depression.

Life was pretty miserable with these three sides, but when I figured this all out, I stopped the drug cold turkey, and that is when the timeline played out exactly as advertised. Sexual energy returned full force for a few weeks, but then about six weeks after stopping, ED/shrinkage/testicle pain began, very dry skin, can’t sweat anymore, hair is thinning everywhere, body temps in the 96 degree range, body odor completely changed to cat piss as one member wrote and it totally rung a bell, major muscle wastage, and the brain fog. So I’ve been hit pretty hard by this. Enough that I’ve gone on disability for my full time job, quit as a part time fitness trainer, and gave up my apartment in Arlington, VA to move back with my folks. Life has become a survival game at this point, and depression has set in full force.

Like many of you, anti-depressants and sleep aids do not seem to work very well, so difficult working with doctors who don’t understand this condition. Since I live close to Washington D.C, I went to see Dr. Irwig one two occasions, and much to my surprise said that my symptoms were not related to the drug. I was shocked honestly as this seemed pretty obvious, but maybe he threw me a bone to offer me some hope. I asked him had he diagnosed anyone with PFS before, and he acknowledged he did. And hate to be bearer of bad news, but those of you frequenting this site know that few treatments seem to be long lasting or successful, Dr. Irwig said he did not treat patients with drugs because of those reasons. So not satisfied, I went to see Dr. Jacobs in New York who is an amazing doctor and whom I recommend to anyone who can see him as he offered me hope that things can turn around. Unfortunately, too much information can be dangerous, and from what I’ve determined over the last three months is that our problem goes well beyond what these doctors can treat. The evidence is pretty clear that the drugs of today are not adequately addressing our issues, so despite being offered Clomid as a round one treatment, I do not plan to take it anytime soon. I even contacted Dr. Santmann, the CEO of the foundation and asked him if any of the doctors are having much luck with treatment, and he was skeptical himself that many interventions were having lasting effects. I tend to agree that time is the deciding force here, and some guys improve, others don’t. I feel bad for the fellas with the sexual sides, but I am in such a bad spot emotionally, I would gladly take ED for the rest of my life if I could get rid of the fatigue, insomnia and constant feelings of anxiety and depression. I am sure many feel similarly as well.

So thought I’d officially join the club. I go by SoccerGuy on this forum as I used to love to play before I got too tired to continue. I’m very worried about my future as many of you are should be. I think about ending it all the time, and yesterday was my 35th birthday, and it pains me to think of all the friends and family I have routing for me to get better. It is such a shame, and as bad as I weep for myself, and feel bad for all the other guys who have been hoodwinked. Systems are in place to prevent this from happening, but it shows just how unreliable the system is. A drug company producing an unsafe drug, and FDA that does not actually study the drugs appropriately, and doctors not understanding the mechanisms of the drugs they prescribed. Really a shame. I plan to post here from time to time, but being that we are in this for the long haul, try to keep yourself busy, as healthy as possible, and keep the faith that things will get better in the future. If any of you are in the DC area, send me a private note so we can meet up. I’ve been fighting depression for a year now, and before I let this thing beat me, I’m trying everything I can to fight back. Would love to meet someone in this fight as well.

I hired a trainer, coincidentally he knew someone who suffered from PFS for four years and never joined them forum. he put me in touch with this person and he told me a story much like all of ours. Only difference is he took the clomid! And it worked for him! He says he has all his manhood back from clomid alone. I redid my bloodwork to get a solid baseline and I started today. I was too scared for over a year to mess with another pill. Maybe it will help me like it did him. Maybe it won’t. But it’s time to try.

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Well naturally love to hear how it works for you. There are plenty of stories of Clomid helping, so I think it is totally worth a shot. Good luck. Keep us posted

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Good luck to you. Let us know how you get on!

Struggling like the rest of you. If only could get some rest and feel somewhat refreshed in the morning. This battle has too many fronts. I saw the link this morning to the researchers who stumbled upon PFS or a similar type of adverse reaction people had to what we have. Very interesting for sure. I am curious what they did, if anything, to help those people.

Soccerguy do you have any liver exams done?

Not sure. A few years back before PFS I had a scan and told me about the spots. Like everyone else I have perfect lab values depicting ideal health but nothing to properly compare my baseline.