Having lurking around here for the past month and reading lots of stuff, I decided to post my story.
I’m a 23 year old healthy, athletic, outgoing guy. I was 19 and had no hair loss whatsoever and had a good looking, thick long hair, I became suspicious of a thinning hair after I cut my hair short. Looking back on the photos, I can say that I had no loss but being obsessive and vain, I decided go to a derm and she said that I had no visible loss but I can get on Propecia as pre-caution and added that it has some serious side effects but those hit small percentage of people taking the drug and sides would go away within weeks after withdrawal. Typical bullshit. So I got on the Propecia, and did not have any visible sides other than less frequent morning erections (like 3-4 mornings a week maybe). I didn’t give a shit since it was no big deal so I kept on. But looking back on it, I can tell that I was sweating like an ANIMAL while on the drug (this got worse this spring/summer but I always blamed the heat and stress I have been through while trying to graduate) and had some forgetfulness issues during last months. I remember myself complaining to my girlfriend (whom I know for 8 years but we started dating this year) about feeling ‘less intelligent’ while studying when I was trying to graduate this May. It was like I was struggling to add new information and I started to feel this during this spring also. I was a heavy drinker (on the borders of alcoholism) so I blamed it on alcohol. But generally speaking about the 4 years I was on fin, I had no cognitive issues like brain fog, confusion etc etc. At least it was subtle.
After being able to graduate (July), I started giving less shit about my hair after 4 years on fin, I started using fin with less inconsistency. Like missing a week or few days here and there. I decided to quit after finishing the ones I have. I don’t exactly remember when I took the last pill but it was between 5 and 15 of the Nov, I’m sure of that. And I missed like 2 weeks before that.
After quitting, I started to develop side effects that I had never experienced before. Things started going downhill on Nov 18 with a panic attack (never had one before, actually I learned that I had had a panic attack after some research on internet) and a general feeling of dizziness accompanied with shortness of breath which lasted for 4-5 days. Next day while I was driving, I was so tired and cold (shaking, literally) I had to stop the car to take a nap, those was the worst moments of my post-fin life, I don’t know if it’s a crash or not but this type of thing never happened before, I was a highly energetic guy. I said this is no good but never attributed it to fin since only side effects I knew was depression and ED. I suspected of different things like fybromyalgia etc. Those days, I accidentally ran into this site (while I was wondering since I had been off propecia, when would my hair begin to thin) and started reading and I was like WHAT THE FUCK. As I said, I’m an obsessive kind of guy so I’ve been reading forums everyday for the last month. I don’t want to, since it brings me down (no offense guys, I am %100 aware that this shit is biological but stressing over it must make it worse, at least it does in my situation, but I can’t abstain from obsessing either) but I can’t help myself keep searching.
After that, everyday I started to experience different symptoms that I never had before. Frequent urination one day, general feeling of cold the next day, pain in the chest, burning sensation while peeing, joint pains the other day, lack of motivation, constantly sleeping one day but can’t sleep next day, extreme fatigue, no desires to do things I love normally etc. Everyday a new one. I can count up to 20 with minor changes. But a positive thing is, most them have subsided. Now I just have the sides that I checked in the first post. And usually, 4 or 5 weeks a day, I feel good, naturally healthy.
I’ve been to 3 different endos and they all said that it’s all in my head. And one of them is a famous doctor that appears on TV and he made fun of me being “very keen to make up some new diseases” and said there was no such thing as PFS. As I was so depressed that day I left his room saying “I’m pretty sure that there were docs who said that diseases such as AIDS or cancer was non-existant”. I brought some studies with me regarding PFS but none of the docs give a fuck, to be honest. They all prescribed SSRIs and I refused to take them just not to fuck things up further. So I gave up my hope on docs, but I’m planning to see an Uro and an ENT to at least have some those symptoms treated. By the way I had various types of blood tests done and all seem “perfectly healthy”. And when I say healthy it’s not like “low but still on range” healthy. They were pretty decent. I’ll post them here when I got the chance.
As I said, being an obsessive kind of guy, I monitor the progress very closely and note it down. And I what I have been observing (just like most of you) is that these things come in waves and come usually (not always) all together. Basically I have my good times and bad times. While I can have 3-4 straight days just like the old days, I can have ~1 hour of symptoms too. Now here is a list of the symptoms that I currently have and a general outlook of my situation:
Testicular pain: Comes and goes. It comes like 10-15 mins and goes away. Then comes again a few hours later, happens few times a day if I’m on a bad day. I have this going on for 2-3 days a week.
Pain/ache in the ears: Same with the testicular pain but this is harder to live with. Will have this checked.
Chest pain: From what I’ve been reading, it’s not a gyno type of pain. It’s in the middle of my chest. Happens once or twice a week, usually after drinking. It’s like a stinging pain, like slightly pricking my chest when I take a deep breathe. Don’t know if it’s propecia related. I’ve seen posts of Mew telling people not to blame everything on fin so I’m cautious, hehe.
Pain inside the anus: Don’t know if it’s prostate pain or what but I sometimes feel pain inside my anus. Like a mini cramp/spasm. This also happens on my good days too. I’ll also have this checked.
Prominent veins on penis: 2 extra varicose-like veins popped on my penis around the glans 2 weeks ago. This is what scared me most. What is the cause of this? I searched for it but I haven’t seen a conclusion about the exact cause. Also there is one thin and dark purple vein that appeared on the shaft. And I developed papules literally overnight (found out that they’re harmless and pretty common), don’t know why.
Sexual stuff: I never suffered from ED nor shrinkage (it’s the same size with 5 years ago, I had measured it back then) but my erections seem %80-85, especially when masturbating. And there are no problems with the ejaculation, getting it up or sensation. I think this is somewhat psychological because I constantly think “Is it hard enough? Is it %100? Maybe this is the last jerk off of my life?” while jerking off. So I’m pretty unsure of this but it’s worth keeping an eye on. And while I haven’t lost my libido, I can’t say that it’s %100 either. I definitely have the urge, I still want to have sex/masturbate after a day without it but it’s not %100. Don’t know maybe it’s the stress I’m going through; I’m scared as fuck of PFS. It’s 24/7 on my mind and you know, libido gets effected firstly on those type of situations. My girlfriend says she sees no differences regarding the erection by the way and I told her about the WHOLE situation. She’s very supporting fortunately.
Brain fog: On my bad times I have some sort of dizziness/lightheadedness all over the place that lasts about 2-3 hours generally. It’s like I’m drunk but in a bad way. I don’t feel well and I can’t concentrate on anything. Spaced out. Since this is the most disturbing symptom in my opinion, I also tend to develop a mild melancholy afterwards thinking “I’m fucked, I’m fucked, I’m fucked, what am I gonna do” etc. And I sometimes find myself speaking not as well as before, using too much “err”, “umm”, “you know” type of words.
Fatigue: I love walking and am a generally very active guy who’s also into sports, but during the last month, after walking 2-3 km, I yearn to rest. Normally, I could run 7-8 km without being exhausted. It’s not so extreme that I can’t get out of bed or something but I definitely have less stamina than what I had 2 months ago.
Sleep: I had some sleep problems for the first few days, fortunately subsided. Now I can sleep like how I used to (wake up 1-2 times everynight but I had that pre-fin also) but I wake up really tired, no matter how long I sleep.
Alcohol feels different: I don’t get drunk the way I used to, I don’t know. I used to feel extremely relaxed when I drink, still I do, but not like what I used to feel . I reckon that this can be partially psychological too as I don’t find myself relaxed since I’m constantly worrying about PFS.
For the last 2-3 weeks, I reduced smoking (used to smoke 2 packages a day) and alcohol intake and following my general type of diet which was already healthy. I added some dietary supplements that I have seen people here using often: Omega-3 fish oil, L-Arginine, Vit B complex, Vit D and a Multivitamin. As I said, I can have few days straight without any sides but the next day I can feel like shit too. But generally, symptoms don’t remain much longer than a few hours. But on my good days I can have some symptoms than can come and go in minutes, like a sudden mild pain in my testicles etc. By the way I’ve been feeling the rebounding of DHT for the last 3-4 weeks as the number of my good days increased (first week was the worst) and the oily face and small pimples that I used to have are back. And during the first week I just didn’t have the urge to do things that I normally LOVE (like listening to music, drinking, reading, hanging out with friends etc) – which I’ve been reading that a common thing in PFS, that urge is also back. Those are some good signs, I believe.
So fellas, what are the odds? It’s been like approx 6 weeks off the drug. Still waiting things to stabilize. Do I have definitely PFS? Should I wait few more weeks for symptoms to subside? If so, how many more weeks should I wait? When can I tell that those symptoms are persistent? How to tell that you definitely have PFS? I mean, what is the difference between a guy who developed symptoms which subsided after 6 months post-fin and the guy who “recovered” from full-blown PFS with all symptoms after 6 months?
Any comments, suggestions, feedbacks, thoughts, theories , questions etc would be greatly appreciated. Sorry for the long post, but I’m desperate, and since the doctors won’t let me speak or don’t give a fuck about what I say, I had to bare to someone. I’m scared like hell even imagining things going worse. Thanks.
