Hi,
I am new to this board and I am sure like everyone else here wishes they knew nothing about this subject and never had to deal with it. But given it seems I have to, I would like to give you my story and I welcome some feedback on if you think I have PFS and if there is maybe milder forms of it or not.
So some background…
I actually first took Propocia/Finasteride back in 2009 for almost a year. I had no side effects while on it or when I went off of it. I highlight this fact as in all my research, I do not know of anyone else who was on it for a while and went off with no side effects and then when I went back on it Sept. 30, 2015 I almost immediately started having side effects. Within two weeks I was in the ER with for epididymis and they did an ultrasound on me. I told the ER I had just started Finasteride and no one there said anything to me about discontinuing it. They just prescribed me I think it was 500mg of Ibuprofen and Sulfamethox and they also gave me some pain killers (I forget what kind). The pain was so intense, I could not walk. Even shifting in my chair was painful and one of my testes swelled up at least twice its size. But I had a raging boner…wow, what I would give to have that back again. The Ibuprofen and anti-inflammatory seemed to work pretty well as in 2 days I was back to normal. This happened I think 2 more times over the next two months. I just dealt with it thinking it was my body adjusting to the Propecia/Finasteride and it would go away.
Now just previous to being prescribed the Finasteride, my wife and I separated. So to be honest, right before I started taking Finasteride, I was masturbating twice a day, every day as I had a very strong libido and I would get aroused simply with bikini pictures and that would at times get me masturbating. Shortly after starting to take Finasteride, that stopped. What I failed to immediately recognize which I can see now through hindsight is that after I started the Finasteride my libido started to come to a crawl. I no longer had my morning erection which was always very strong. I was not thinking about sex anymore. Bikini pictures would not do anything. Videos and pictures of my wife that always got me off, now could not even get me hard never mind make me ejaculate. For me to do any of these things I had to really concentrate. Then when I did, the sensation in my penis was just not there. Climaxing has no feeling like before. My penis is not sensitive like before. My ejaculation is maybe one tenth of what it was before and usually very thick. I was thinking this was all due to the stress of our separation.
My wife and I got back together in April and I noticed how hard it was to get an erection and to try to climax. I really had to plan it unbeknownst to her to get myself super excited before attempting sex with her. The few times we have tried, I could not really stay hard or climax , but I will say I could usually at least keep a semi-hard erection and through will power I could have a weak ejaculation without the pleasurable climax feeling. Anyway, at first I thought it was due to the separation. Then I tried as mentioned before looking at videos or pictures of her that would always do it for me and nothing. Then I tried some porn with smoking hot woman…nothing. Then I realized there was a problem. I stumbled across on the Internet about Finasteride and the side effects and now with hindsight I can see what happened.
I stopped Finasteride the 6th of June of this year. So I was on Finasteride for about 9 months. I have been off of it for just about 3 months with really no improvement. I started to see a local urologist who said the Finasteride should be out of my system and all function return within 30 days. But that has not happened, so his approach was to prescribe 5mg Cialis. However, from my perspective, that is treating the symptom and not the root cause. It does allow me to get an erection, but it is not as hard as it used to be and maybe it is my imagination, but I seem to have lost a little length and girth as it does not seem to swell up like it used to. I used to be able to when I was hard make the head kind of pulsate making more blood go into it. There is no way I can do that now even with Cialis. Anyway, my health insurance will not cover Cialis so it is not really a long term solution for me as it is so expensive.
My testosterone is 967 ng/dL which seems a little high for my age, but if you figure that Finasteride raises your testosterone level 15% like I read on some sites, it is then in line. Next my estradiol level is 31 and from what I have read on other sites it should be 26 to 27 for my age. So again it is about 15% high which Finasteride is also supposed to do. I have read on some sites that Dr. Irwig and Dr. Crisler have said that they have many patients with normal levels or similar to what I am saying that have this problem. Also I have F lH of 5.7 and F Fsh of 5.9 which seem in line of what is normal. I also understand it seems a lot of people on this forum have low testosterone from this. I am curious to the ratio of people who have low T versus normal levels who have this issue. I do think it is probably a gene expression thing since the levels “seem” normal. So I am not too optimistic from what I read here that anything I do will be able to switch that gene back on.
I am a 46 year old man, in very good shape. I started to lift weights again a two months ago and did not notice any difference in my libido(I used to be very bulked up until I tore my shoulder lifting). So now I am going to try switching up my diet and lifting harder now that I am through the re-acclimation period in the gym. I have been trying for about a month the following: a B Complex, 50mg DHEA, 500mg L-Arginine, a general multi-vitamin, and I was doing 50 mg of Zinc but I recently cut that out as I read that once you go over 50mg a Zinc, it can be detrimental. Yesterday I added 6mg of Boron and creatine. The Boron and creatine are from reading that it is supposed to help with increasing your levels of DHT. But I guess if the gene is off that converts testosterone to DHT, nothing will happen, but I figured I would have to try as you never know. If none of this works after maybe 2 months, I was thinking of fasting pretty severely to try to shock and reboot my entire body and maybe that would turn the gene back on/reset my endocrine system. Then beyond that, I will be doing some research on maybe stem cell options if there is even any info on that anywhere.
Thoughts, comments, suggestions? Feel free to point out where you think I may be way off base as I am a newbie to this as much as I don’t want to be here nor does anyone else I am sure.
Bob
PS, I hope Merck’s executives rot in hell…but, I am not bitter…::sarcasm::
