New sufferer of PFS, don't know what to do next

Member Stories
#1

I am a 30-year-old male living in Hong Kong. I have been using finasteride for 3.5 years until I quit the drug in Nov 2016. 5~6 months after, I started to experience erectile dyfunction (i.e. difficult to obtain and maintain an erection) in April 2017. Over the next month, the problem has worsened to the point where I could not have sexual intercourse with my partner and where my libido has completely disappeared, so I decided to consult an urologist in my city in June 2017. On top of that I experienced acute anxiety and I seem to have trouble achieving quality sleep (i.e. my sleep is shallow and I tend to ALWAYS wake up after a little more than 6 hours; I could sleep for a continuous 8~9 hours in the past.).

His diagnosis was that I was just suffering from psychological stress and anxiety, then he prescribed me a daily tablet of Cialis. A reassuring professional diagnosis alleviated my anxiety, but I could still only sleep for ~6 hours every night. During the next two months of June and July, I could also resume having sexual intercourse with my partner and I regained roughly 80% of my libido although it didn’t feel quite the same as before (can’t really explain the difference). At this point, I found out about Post-Finasteride Syndrome on the web, so I asked my Urologist whether this would be the true underlying cause of my condition. Apparently, he has never heard of it and he dismissed the whole notion of PFS. I can’t seem to find any resources relating to PFS in Hong Kong either. Anyway, my urologist decreased my dosage to 1 tablet of Cialis every 2 days. For the past month, while I can still obtain and maintain an erection during sexual intercourse, my libido has drastically reduced (to 10%~20%?) since I have gone on the new dosage.

After I found out about PFS on the web, I started freaking out again because the condition seems much more severe than mere psychological stress and anxiety. I began to doubt my Urologist’s knowledge about my condition. More importantly, based on the few stories I have read here (I couldn’t bring myself to read any more at this point b/c of my anxiety), the condition seems persistent and irreversible. Moreover, it has far reaching consequences other than impotence and libido problems. I would imagine that the world’s best experts on the condition (since health professionals don’t even acknowledge its existence) are fellow patients here on this forum. As I am freaking out now, I am struggling to gather the first few burning questions that come to mind. I hope you guys can help me figure out my next steps.

  1. What % of finasteride users experience PFS after quitting the drug (apparently Donald Trump doesn’t have a problem)?
  2. What % of PFS suffers can at least partially recover to lead a normal, healthy and satisfying life?
  3. Are there any tests to systematically assess how much damage the drug has done to my entire body?
  4. How to find out whether this is really PFS or some unrelated health issue?

Thank you so much in advance for your help! You can’t imagine how overwhelming my negative emotions have been lately, especially when I have nobody to talk to about it. Again, any advice / support / sharing is appreciated. Look forward to hearing from you all.

#2

labrix.com/NeurotransmitterTesting
medicalnewstoday.com/articles/265802.php
Save your time and money, rather than wasting it on doctors doing blood hormonal testing (which will tell you nothing) and trying more drugs to fix your libido problems, spend your money to buy supplements which have been proven on this forum to repair pfs sufferers, and spend your time getting plenty of rest and exercise.

#3

I think you went to a wrong doctor. I suggest you go to an endocrinologist or a sexuologist instead. I visited 4 doctors of various specialities before I finally found the one who recognised the problem and put me on a treatment. The main issue with treating pfs is that the hormones can be at the normal level. The problem is in the decreased number of testosterone receptors in the body cells or their reistance to testosterone (but I may be wrong, I’m not a doctor). The treatment that helped was clomiphene, a drug that increases natural testosterone production in men. When I started the treatment, my testosterone was in the middle between normal low and normal high. I started feeling better only when it raised to normal high (or even slightly above). Of course the fact it helped me does not mean it would help everybody - it’s up to a doctor which treatment option would be best for you. It is not a miraculuous cure, either - my doctor said it should not be taken forever and I am currently slowly decreasing the dose and having my ups and downs. However, I believe something can be done to help you. You just need to be patient and find a high class specialist. Stay strong!

#4

Ei man!
First thing I wanna say you is that the sides of PFS are not irreverible condition. Some people here has improved quite a lot, or some others have fully recovered, which actually was my case. This is just to give you hope, but also say that is not an easy path…

I had a really big crash and got PFS on may of 2015… I recovered 100% by aprol/may of 2016, and I fuckking lived an amazing year. Awesome.
The thing is that 3 months ago, I started to feel strange again, and now I’m having my ups and downs but some days are really bad.

With all this I wanna let you know that recovery is possible, I think, (and hope with my fingers crossed), that I will do it again. I didn’t do much things, for me I think was overall time… But I did, wnet to an urologisy and had a treatmen to detox my liver with natural pills. Then took a multiviatmin as well, but I just took it for 3 weeks.

My GP prescribed me Cialis (5mg) as well, but I just took it for less than 2 weeks (1 pill per day) because I was sure that my problem was not in my head and also the erections I was having with Cialis were really strange and fake.

So with time I finally recovered 100%, (the sexual side was the one that more lasted, and maybe I recovered 95% instead of 100%) but I was feeling fucking amazing.

My advice is be patient, rest all as you can, get the help of your familliy (they can just give you love since they can do nothing for the condition), Istarted playing football so some sport may help you as well… and if you get recovered take care of yourself and avoid drink too much, stress and sleep well, I think that 3 things were the cause what I’m worst again…

We’ll defeat PFS.

2 Likes
#5

Hey David,

Your story gave me a lot of hope. Thank you!

I’m new to this forum and when I found out all those stories here I was scared. I have been on fin since April/2016. I had not experienced sides effect before expect last summer I felt watery semen and weaker erection. But it got back to normal later on. 3 weeks ago I traveled back to china and had bad jet lag. 2 weeks ago I noticed it was hard to hold an erection and it was soft which I never had before, I was so scared it was sides of fin. So I quit it cold turkey which I really regret. After I quit, I had a complete impotence, penis is just cold and being in the status of after cold shower. I also had sleep problem after it, I wake 4 hrs after falling asleep and it takes a while to fall sleep again. About a week later, on 17/sep, I had a good sleep and had a wet dream, I woke up with a good erection. During that day I could have erection when I think about my gf naked. I thought I recovered. But the day after it, I started to have weak erection again and worse sleep, waking up every 1-2 hrs. I also noticed my heart beat goes up a lot even when I was just taking a slow walk and I cold sweat a lot! But today I had a wet dream again… but during the day. Nothing gets better. It is been 2 weeks off the drug, I don’t know if I will ever get better…but reading your reply gives me sort of hope.

I did a blood test on 15/sep
T 12 8.7-29
E2 74 90-200
Prol 13.9 xx-15.4
LH 5.5 1.6-8.7
FSH 7.5 1.8-12.4

It is a small clinic in china so it did not test a lot of things.
The Chinese doctor is like oh this is just side effects, you should use the Chinese traditional medicine, it is best to reverse the side effect of those western medicines. I didn’t take it tho because I thought I need give my body some time to readjust…

I’m going back to States tomorrow and had an appointment for a more complete blood test,

Any advice?

#6

David_1986 is a fake.

1 Like
#7

Hi,

My testosterone was at the same level when I had problems. Then I found and endo and he put me on a treatment (see my previous post), which brought up my T level to 25, which made feel even better than before starting fin. My advice is be patient and keep looking until you find a really good doctor.

Stay strong!

#8

Don’t listen to this sort of speech!!
The suplements are of variable efficacy here and these tests are useless.

You need to know that there are a lot of charlatans here the biggest being CDNUTS. There’s lots of affiliate marketers who have invaded this forum promoting natural solutions suplements, even books and shit like holosync or you are the placebo book. Thread carefully!!!

Do not ever buy anything from that guy.

Go for proven medical exams and rule out everything you can. If money is an issue do an insurance

Most people recover between 1-2 year mark. Live a healthy life style and don’t spend your money on useless crap

#9

No mate, I’m not, for sure.

#10

Of course not, David. You are not a fake.

#11

Getting a neurotransmitter test isn’t cheap it’s about $250-400 and takes a few weeks to get results but showing it to doctors and nutritionists is a lot more helpful than trying to explain that you’re suffering extreme cognitive symptoms like depression/anhedonia/derealization/brainfog from PFS and you need urgent help fixing your brain chemistry and you’re not just insane. The test results don’t tell you a whole lot but it’s better to have some evidence than none. If you’re struggling with money it’s a complete waste to get even more expensive hormonal tests that show you’re still in range and “it’s all in your head”. If you can get those tests covered by insurance then of course they couldn’t hurt. Tests are a waste of time and money and lead to nowhere unless you’re trying to get prescribed something like clomid or you’re doing stool tests because you have infections that need to be treated, if you’re poor spend your money on healing your digestion or other more tangible things like an air conditioner to help you handle the heat or a 1-person sauna to help you detox every day.

#12

Neurotransmitter test have absolutely no backup for this situation. You have to ask yourself why is it they’re not a common practice in medicine. It’s probably because they have not been found to be significantly correlated to mental symptoms.
They have their place for other things but not for mental health. Some evidence is better than none that’s right, the problem being that neurotransmitter testing have provided no evidence at all of anything mentally related

Medical tests are not useless. They are used because you need to rule out other diseases since there is no diagnosis for pfs and symptoms are mostly unspecific and overlap with many other diseases. In other words, at the moment, if you’re lucky enough to find a doctor who knows pfs, he will have to diagnose it through an exclusion diagnosis and your clinical history.
In this sense its irresponsible to suggest someone who has just arrived, that medical testing and medical establishment is useless, as the person may be suffering from something else.

Regarding the “healing the digestion” I’m not quite sure what you mean. My digestion is perfect. I have air conditioner because it’s very hot where I live, but I’m not sure what’s the relationship between air conditioner and improving mental health…this is exactly the kind of things I was talking about in the post you quoted.

If you explain your doctor you’re having depression , anheddonia, derealization, etc , and he doesn’t believe your justification (pfs) he will still try to help you with the specific symptoms you have, because that’s his job. Otherwise I suppose that would count as medical neglegency, in which case the easiest way out is to find a new competent doctor. This doesn’t mean he can solve your issues either. Just means he’ll try to find you a solution with the tools he’s got in 2018 - which aren’t amazing.

Btw people who are mentally ill aren’t insane either. They’re just ill.

2 Likes
#13

A test that hasn’t been proven to correlate is still better than no test, I haven’t looked into it enough to form a concrete opinion but you can’t just take the word of big pharma and their studies when they tell you something is insignificant. It could be in their interests to downplay options that work and are affordable and to promote expensive treatments that barely work. I self medicated with off the shelf supplements using trial-by-error, to save myself time and money and confusion I wish before I had taken anything done at least one of these tests and visited nutritional psychiatrists and people like that to guide me in fixing my brain fog and anxiety, or at the very least vitamin and mineral deficiencies.

I wasn’t promoting neurotransmitter tests though I wish more here would have them done and report back out of curiosity, I was responding to the question:

If you got such a test especially if you also had one done before fin or pfs then it could provide some evidence how much change or damage occurred. The same if you got brain scans or your fat % and muscle mass or bone size and density checked before pfs and had it done again weeks later after crashing on fin. Such tests would show more change than blood or even urine hormonal tests, so they would better demonstrate the severe decline from fin. How useful they would be to treat or undo the damage is another matter.

1 Like
#14

I’m not taking the word of “big pharma” and I’ve formed an opinion otherwise I wouldn’t be posting so surely about ut

#15

Thank you all for your responses!

I stopped coming here a year ago on my doctor’s advice, because he thought the anxiety induced by reading these posts would just make matters worse. After a bit of hesitation, I have decided to come back for a peek today, leading me to take notice of so many wonderful people having given me their advises, for which I am absolutely grateful. It’s only fair that I give you guys a little update on my situation.

After I stopped Propecia, I experienced various physical and sexual side effects as I have already mentioned. Physical side effects included mainly of dry skin and dry hair, which reverted back to (close to) normal after a couple of months. Also, my sleep has gotten better gradually over time, so I guess that’s another win.

Now, to the problem all of us are most concerned about - I still suffer from ED and the anxiety that comes along with it. With Cialis, I can get and hold an erection; without it, I tend to have trouble taking things to the end. During the good times, without Cialis, I might lose an erection during foreplay, and it might take me 10~15 minutes to get it back up with constant physical stimulation from my girlfriend, after which I would have to quickly penetrate her to avoid losing my erection again. During the bad times, I couldn’t get it up at all. There have been ups and downs, and I don’t see an overall trend of improvement in this arena. In short, if I were to have a normal sex life, I would need to be on a 2mg course of Cialis every other day. On top of that my libido has never recovered. A lot of things that would have turned me on in the past simply do not work on me anymore. I am now only slightly interested in sex when I feel the girl wants it badly. Also, without Cialis, I can only obtain erection through physical stimulus; I have practically lost the ability to achieve spontaneous erections with dirty thoughts.

I come back today because the past week has been one of those “bad times” I mentioned, and I feel I am in need of a little company. Just out off curiosity, I would love to know if any of you guys are having the same issues I have. I am beginning to feel that we all respond to PFS a little differently. Some of us might have similar symptoms, others might have ones that are vastly different.

Finally, a word of caution to people who are still on Propecia but are contemplating of stopping - DON’T. It seems that what triggers POST-finaesteride-syndrome is the stopping of the drug. I was perfectly normal right up until swallowing my last pill. It’s only a few months after stopping the drug entirely that I felt the effects of PFS. If you are already on it, it looks like you will be stuck with it for life unless you want to risk becoming one of us.

#16

exactly. i had literally no symptoms before i stopped. i thought stopping would be the best- wrong thought !

#17

I have your exact symptoms since beginning accutane, it’s tough

#18

Your story certainly has similarities to my story - thanks for coming back to share.

I am curious, do you find that when on Cialis you are better able to get spontaneous erections and its easier to get an erection when stimulated? You said that without Cialis, there are no spontaneous erections.

Do you feel you can have a normal-ism sex life on Cialis? Any side effects to the 2mg dose?

#19

Hi David, I’m glad you made a recovery. As for me, although my sides were not that severe to begin with, I still have low libido and ED, I do get morning boners now and then… And I do jerk off every 3 days or so. Just to make sure it works… it’s slightly getting better too now… Kindly pleas give me some advice on how to tackle this.

You must be real lucky to have beat this. Cheers mate!

#20

I just realised that David hasn’t been on for a while and it was dumbkid who was typing.

Hehe my mistake. Anyway if any of you guys got some advice for me, I’m happy to hear it guys. I wanna get back to getting boners with maybe just the fabric of my jeans touching my penis. It’s been quite a while since I had a spontaneous boner.