Atypical PFS? "The Hero's Journey"

[Peter Jordanson]

Hey gents,

First off, I have to say a sincere thank you to everyone who has detailed their journeys here and a special thanks to those of you who have stuck around post-recovery. The mental and physical resilience documented here is truly something to behold.

My Story:

My case of PFS seems to be somewhat atypical. I’m now 30 and took the drug for the first time last year for about three months (March-June 2020). I stopped a month or so in when I got sharp shooting pains in my penis but continued when three doctors asserted that this wasn’t from the finasteride. I started up again and the pain came back, even with less frequent doses, so I eventually quit altogether because I also developed what looked like a rash on my glans. I’ve been off for 9 months now and am still dealing with symptoms.

My symptoms:

1.      Pain - Penile pain (and erectile pain at times) and general pain in the pelvic area – shooting pains, stabbing, burning sensations, a sense of pressure in the penis and perineum etc. The pain fluctuates throughout the day, everyday, with remarkable consistency and stability (I get the same shooting pain everyday at 9:30 am, for example, and other pain sensations throughout the rest of the day)
2.      Glans appearance – Inflamed glans (red on top and around the urethra opening); the “ridges” on my glans are also more pronounced now (i.e., it’s not smooth like it used to be); glans appearance also changes throughout the day; it can look purplish at times and very red at other times, and sometimes it doesn't look too bad.
3.      Hypersensitive glans – glans is painful to touch; just brushing against the seam in my boxers is incredibly painful
4.      Scrotum - Inflamed/red scrotum and vascular abnormalities in the scrotum (“spider veins”), including a varicolcele on the left side and maybe one on the right side; I think these developed a few months after stopping the drug.
5.      Post-Ejaculation Pain – I get pain in the prostate? area shortly after ejaculation and my genital pain is worse in general for the rest of the day.

It seems like my case is a bit unusual, so I have a few questions.

Questions:

1. Do you think these symptoms are in fact finasteride-related?  
2. Has anyone else experienced (and recovered) from these symptoms, in particular?
2. Any thoughts on what my underlying issue might be? (My symptoms seem to overlap, at least to some degree, with pudendal neuralgia symptoms and I know that finasteride has been linked to pudendal neurapthy in at least one study.)

Any feedback would be much appreciated. I am just about to start the protocol now and look forward to watching and encouraging others along their journeys.

Thanks in advance!

P.J.

[PashaSolid]

Yes I do think most of those are finasteride related. Keep us updated on your progress

[PashaSolid]

Also from some research I’ve done, it is possible that men with low testosterone may experience symptoms of benign prostate enlargement.

[Cdsnuts]

Yes I do think most of those are finasteride related. Keep us updated on your progress

He does not have typical pfs symptoms. Not sure why you think he does? Care to share?

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Also from some research I’ve done, it is possible that men with low testosterone may experience symptoms of benign prostate enlargement.

What does this have to do with his case?

[PashaSolid]

He does not have typical pfs symptoms. Not sure why you think he does? Care to share?

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What does this have to do with his case?

Sure bro. Actually I acknowledge these symptoms are not typical of PFS but I’ve come across a dozen of finasteride/ dutasteride users, including myself, who have experienced this. Most of them were sub 30 year old guys like me and OP. It’s a symptom that’s noticed enough to where a correlation between them and fin/dut should be at least considered. I believe this because of the ABSENCE of these experiences BEFORE fin/dut usage and given what we know about the nature of 5-alpha blockers and their direct impact on the function of the parts of the male reproductive system. Some more reasons why I believe some of OPs symptoms are related to finasteride use, and I can’t confirm with 100% certainty but I think so,

1.Because of my similar experience that’s improved since being on the protocol, the shooting pains and other sensations, hypersensitive glans, the post ejaculation prostate pain/discomfort. I’ve experienced all of these and more after my 2 month stint with the drug with the only factor changing before and after those two months being my ingestion of dutasteride. I can’t say whether or not OP has had any pelvic injuries but assuming there is an absence of an external force then finasteride is the likely culprit because of its interference with the male enzymes and hormones and the prostate having a connection to penile pain and glans discoloration.

2.OP is at a younger age where these problems are not common clinically.

3. There are a few clinical studies where Men with Metabolic syndrome that experienced low test had inflamed/enlarged prostates that had symptoms of pain the OP described and feeling of pressure in the perineum. After 6 months of testosterone supplementation their symptoms improved.

4. Inflammation- we know pfs can cause inflammation and OP described symptoms of inflammation on the scrotum and penis.

My second comment is just a suggestion/useful thought. It’s possible OP has lower amounts of testosterone after his use of fin so my claim indicates the possibility of low test causing these symptoms.

OP also mentioned nerve interference after finasteride use, I haven’t done research on this so I’m not sure but it’s also not something I’m ready to rule out.

[Cdsnuts]

Sure bro. Actually I acknowledge these symptoms are not typical of PFS but I’ve come across a dozen of finasteride/ dutasteride users, including myself, who have experienced this. Most of them were sub 30 year old guys like me and OP. It’s a symptom that’s noticed enough to where a correlation between them and fin/dut should be at least considered. I believe this because of the ABSENCE of these experiences BEFORE fin/dut usage and given what we know about the nature of 5-alpha blockers and their direct impact on the function of the parts of the male reproductive system. Some more reasons why I believe some of OPs symptoms are related to finasteride use, and I can’t confirm with 100% certainty but I think so,

1.Because of my similar experience that’s improved since being on the protocol, the shooting pains and other sensations, hypersensitive glans, the post ejaculation prostate pain/discomfort. I’ve experienced all of these and more after my 2 month stint with the drug with the only factor changing before and after those two months being my ingestion of dutasteride. I can’t say whether or not OP has had any pelvic injuries but assuming there is an absence of an external force then finasteride is the likely culprit because of its interference with the male enzymes and hormones and the prostate having a connection to penile pain and glans discoloration.

2.OP is at a younger age where these problems are not common clinically.

3. There are a few clinical studies where Men with Metabolic syndrome that experienced low test had inflamed/enlarged prostates that had symptoms of pain the OP described and feeling of pressure in the perineum. After 6 months of testosterone supplementation their symptoms improved.

4. Inflammation- we know pfs can cause inflammation and OP described symptoms of inflammation on the scrotum and penis.

My second comment is just a suggestion/useful thought. It’s possible OP has lower amounts of testosterone after his use of fin so my claim indicates the possibility of low test causing these symptoms.

OP also mentioned nerve interference after finasteride use, I haven’t done research on this so I’m not sure but it’s also not something I’m ready to rule out.

Thanks for taking the time.

The nerve issues are related to fin all the way. That I would say was my worst issue.....the mental/nervous. Complete lack of neurosteroids

So now, including you, it makes two people that I've heard of this occurring. But if you experienced them as well, and for the fact that is was only after the treatments his problems started, then it would stand to reason it's most likely the culprit. I'm glad you chimed in!

Where are you at in your recovery so far?

I would put money on his testosterone being "lower" then "normal"

[Tonster96]

I have all the classical PFS Symptoms plus the sometimes painfull rash at the glans (always painful while having sex). I have had the pain in the Penis thing, but that has luckily disappeared over time. So yes, it sure is pfs related.

[PashaSolid]

Thanks for taking the time.

The nerve issues are related to fin all the way. That I would say was my worst issue.....the mental/nervous. Complete lack of neurosteroids

So now, including you, it makes two people that I've heard of this occurring. But if you experienced them as well, and for the fact that is was only after the treatments his problems started, then it would stand to reason it's most likely the culprit. I'm glad you chimed in!

Where are you at in your recovery so far?

I would put money on his testosterone being "lower" then "normal"

Haha merely a fraction of the time you’ve put in my brother, just trying to give back the good that was given to me best I can.

For sure man I’m with you fully on the neurosteroids being because of fin, like you the mental/nervous sides were my worst, the fear, anxiety, Depersonalization, derealization, depression, brain fog, anhedonia and disconnect. It was the biggest relief when I started recovering from these sides last fall and still continuing now. Being able to wake up and love life again, that zest and curiosity for life man I just don’t even know if I can ever put it into words. Not sure if you remember a thread I started few months back about me regaining that connection to the world and zest for life again that myself, yourself and Turnover and LetsGo chimed in on, about smelling things in the environment and feeling that connection again. What interested me from this post was OPs mention of pundendal neuropathy which was interesting, something I’ll look into.

Right now I’m doing better than I ever thought was possible when I first crashed 2 years ago. To be brief I’d put myself at a solid 40-50 percent right now. I know it might not sound like much, but man this is worlds better fuck that *galaxies* better than the suicidal, shaky, dark , meek shadow, hermit crab mess I was initially. The biggest gains have been mental with slight but noticeable sexual gains mainly involving sperm quality and libido. Still got a ways to go but it’s working man, life’s improved significantly. I’ll start my own thread to serve my due diligence back to the community and help other dudes out.

Forgive me P.J for my rambling bro, hope my response motivated you somewhat, it gets better. I don’t usually check this forum too often but I came across your post and a bell went off in my head, had to say something.

Forgot to also mention that the discoloration in the glans has completely subsided and the pressure in perineum area drastically diminished. The penile pain is present only if I over do it sexually. The glans hypersensitivity is still present but that has decreased as well

[Mojo]

I have experienced sharp pains in my prostate after orgasm multiple times over the years before fin use. Not often at all but I’d say around 5 times a year. This usually coincided with a strong urge to urinate even if almost nothing came out.

Ironic thing is I assumed this was because of an enlarged prostate which I thought would go away when taking fin as an added bonus on treating hair loss. Which it did so far as I have not experienced it since. Could also be because of the T supplements ofcourse.

[Cdsnuts]

Haha merely a fraction of the time you’ve put in my brother, just trying to give back the good that was given to me best I can.

For sure man I’m with you fully on the neurosteroids being because of fin, like you the mental/nervous sides were my worst, the fear, anxiety, Depersonalization, derealization, depression, brain fog, anhedonia and disconnect. It was the biggest relief when I started recovering from these sides last fall and still continuing now. Being able to wake up and love life again, that zest and curiosity for life man I just don’t even know if I can ever put it into words. Not sure if you remember a thread I started few months back about me regaining that connection to the world and zest for life again that myself, yourself and Turnover and LetsGo chimed in on, about smelling things in the environment and feeling that connection again. What interested me from this post was OPs mention of pundendal neuropathy which was interesting, something I’ll look into.

Right now I’m doing better than I ever thought was possible when I first crashed 2 years ago. To be brief I’d put myself at a solid 40-50 percent right now. I know it might not sound like much, but man this is worlds better fuck that *galaxies* better than the suicidal, shaky, dark , meek shadow, hermit crab mess I was initially. The biggest gains have been mental with slight but noticeable sexual gains mainly involving sperm quality and libido. Still got a ways to go but it’s working man, life’s improved significantly. I’ll start my own thread to serve my due diligence back to the community and help other dudes out.

Forgive me P.J for my rambling bro, hope my response motivated you somewhat, it gets better. I don’t usually check this forum too often but I came across your post and a bell went off in my head, had to say something.

Forgot to also mention that the discoloration in the glans has completely subsided and the pressure in perineum area drastically diminished. The penile pain is present only if I over do it sexually. The glans hypersensitivity is still present but that has decreased as well

Thanks fellas for your inputs!

Seeing as it is pfs related, it will eventually clear up, along with all the other symptoms you maybe having. Just gotta put in the work. Congrats thus far!

[Peter Jordanson]

Haha merely a fraction of the time you’ve put in my brother, just trying to give back the good that was given to me best I can.

For sure man I’m with you fully on the neurosteroids being because of fin, like you the mental/nervous sides were my worst, the fear, anxiety, Depersonalization, derealization, depression, brain fog, anhedonia and disconnect. It was the biggest relief when I started recovering from these sides last fall and still continuing now. Being able to wake up and love life again, that zest and curiosity for life man I just don’t even know if I can ever put it into words. Not sure if you remember a thread I started few months back about me regaining that connection to the world and zest for life again that myself, yourself and Turnover and LetsGo chimed in on, about smelling things in the environment and feeling that connection again. What interested me from this post was OPs mention of pundendal neuropathy which was interesting, something I’ll look into.

Right now I’m doing better than I ever thought was possible when I first crashed 2 years ago. To be brief I’d put myself at a solid 40-50 percent right now. I know it might not sound like much, but man this is worlds better fuck that *galaxies* better than the suicidal, shaky, dark , meek shadow, hermit crab mess I was initially. The biggest gains have been mental with slight but noticeable sexual gains mainly involving sperm quality and libido. Still got a ways to go but it’s working man, life’s improved significantly. I’ll start my own thread to serve my due diligence back to the community and help other dudes out.

Forgive me P.J for my rambling bro, hope my response motivated you somewhat, it gets better. I don’t usually check this forum too often but I came across your post and a bell went off in my head, had to say something.

Forgot to also mention that the discoloration in the glans has completely subsided and the pressure in perineum area drastically diminished. The penile pain is present only if I over do it sexually. The glans hypersensitivity is still present but that has decreased as well

Wow. Man, PashaSolid, I can't tell you how much your post means to me. It's very reassuring to hear that someone else (and perhaps others) have experienced similar symptoms and seen improvement with them. I really appreciate you taking the time to comment. I think this will help my mindset. I had no issues with any reproductive organs pre fin (i.e., no pelvic injuries - though i am having a CT scan in June to see if there are any issues they can detect). I'm actually doing a fertility test next week (mostly just for peace of mind - I'm assuming I'll be okay on this front since i seem to be able to ejaculate normal quantities) and some bloods to see what my hormone levels are like. Since I haven't really lost any muscle or weight I assumed my testosterone would be more or less fine but I don't know too much about testosterone, so I'll have to look into this more.. CD, I will keep you posted in terms of my testosterone levels once i get my results!

In terms of nerve damage - there is a study that found that people with PFS and severe ED, in particular, exhibited pudendal neuropathy - this doesnt mean nerve pain but instead that the signals weren't firing properly (or something along those lines); nonetheless, it suggests to me that finasteride could affect the pudendal nerve and lots of the pain sympoms i'm experienceing seem to be aligned with pudendal nerve pain.

Anyway, although my symptoms arent classic PFS, the fact that all of this emerged about a month or so in after taking fin seems way too coincidental; the docs don't seem to think it's finasteride related but they also haven't offered ANY compelling alternative explanations.. (i don't have any infections or STIs)

[Peter Jordanson]

I have all the classical PFS Symptoms plus the sometimes painfull rash at the glans (always painful while having sex). I have had the pain in the Penis thing, but that has luckily disappeared over time. So yes, it sure is pfs related.

Man, Tonster69, you are a warrior - I can't imagine dealing with so many symptoms. Glad to hear some of them are improving. Do you rememeber roughly how long you dealt with the penis pain?

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I have experienced sharp pains in my prostate after orgasm multiple times over the years before fin use. Not often at all but I’d say around 5 times a year. This usually coincided with a strong urge to urinate even if almost nothing came out.

Ironic thing is I assumed this was because of an enlarged prostate which I thought would go away when taking fin as an added bonus on treating hair loss. Which it did so far as I have not experienced it since. Could also be because of the T supplements ofcourse.

Thanks for this tidbit Mojo. Very interesting that you no longer have that issue..

[Peter Jordanson]

Thanks for taking the time.

The nerve issues are related to fin all the way. That I would say was my worst issue.....the mental/nervous. Complete lack of neurosteroids

So now, including you, it makes two people that I've heard of this occurring. But if you experienced them as well, and for the fact that is was only after the treatments his problems started, then it would stand to reason it's most likely the culprit. I'm glad you chimed in!

Where are you at in your recovery so far?

I would put money on his testosterone being "lower" then "normal"

Thanks for this, CD. Yeah, this is really interesting regarding the testosterone piece... I wasn't sure if I would benefit from the herbs given that i didn't have any libido issues or trouble getting erections (besides pain sometimes) but it sounds like testosterone could be playing more of a role in my issues than I originally thought..

[Cdsnuts]

Thanks for this, CD. Yeah, this is really interesting regarding the testosterone piece... I wasn't sure if I would benefit from the herbs given that i didn't have any libido issues or trouble getting erections (besides pain sometimes) but it sounds like testosterone could be playing more of a role in my issues than I originally thought..

"Could" be? Lol....Testosterone is intertwined throughout a mans body so that it effects almost every aspect of his physical and mental health.

[Peter Jordanson]

Hey guys, just wanted to check in. I'm still waiting on my blood test results and haven't been able to do the semen analysis yet - it's scheduled for June.

In the last week or so I had some new symptoms emerge, which is a bit distressing, especially after so much time. In particular, I have pins and needles (paresthesia) in my legs and arms and even in my face at times (not too bad during the day but worse at night and can interrupt sleep a bit). When these symptoms emerged I also started getting dull aches in my head (not quite like a normal headache) that show up in different part of my head (mostly the back and sides). Since most of my original symptoms, seem to be related to nerve damage in the pelvic area, I'm wondering if these new symptoms are related (or if the damage is "spreading" per se).

In terms of the protocol, I am not on it completely because I am temporarily living with my parents (due to COVID, not PFS) and don't want to put all of this on them right now and because I am still waiting on some test results. I'll be moving out on my own in a month and that's when I will be able to fully dive into it.

I have a doctor's appointment next week to do some neurological testing. I guess I am just wondering if anyone else ever experienced these more recent symptoms at all throughout their journeys (i.e., the pins and needles and the headaches) given the atypicality of my case so far..

[Cdsnuts]

Hey guys, just wanted to check in. I'm still waiting on my blood test results and haven't been able to do the semen analysis yet - it's scheduled for June.

In the last week or so I had some new symptoms emerge, which is a bit distressing, especially after so much time. In particular, I have pins and needles (paresthesia) in my legs and arms and even in my face at times (not too bad during the day but worse at night and can interrupt sleep a bit). When these symptoms emerged I also started getting dull aches in my head (not quite like a normal headache) that show up in different part of my head (mostly the back and sides). Since most of my original symptoms, seem to be related to nerve damage in the pelvic area, I'm wondering if these new symptoms are related (or if the damage is "spreading" per se).

In terms of the protocol, I am not on it completely because I am temporarily living with my parents (due to COVID, not PFS) and don't want to put all of this on them right now and because I am still waiting on some test results. I'll be moving out on my own in a month and that's when I will be able to fully dive into it.

I have a doctor's appointment next week to do some neurological testing. I guess I am just wondering if anyone else ever experienced these more recent symptoms at all throughout their journeys (i.e., the pins and needles and the headaches) given the atypicality of my case so far..

I hate to break it to you, but the doctors are just going to end up confusing you more. I guess it's good for your own mental health, but ultimately, they won't be able to do much for you.

[Peter Jordanson]

I hate to break it to you, but the doctors are just going to end up confusing you more. I guess it's good for your own mental health, but ultimately, they won't be able to do much for you.

Thanks for the quick response, CD. Yeah, I don't have high hopes given my previous interactions with various doctors throughout this whole ordeal (as I'm sure most people on here can relate to). Nonetheless, I'll give it a go and report back. You're absoluetly right - it's more so just about peace of mind and (hopefully) ruling out other neurological disorders..

[Cdsnuts]

Thanks for the quick response, CD. Yeah, I don't have high hopes given my previous interactions with various doctors throughout this whole ordeal (as I'm sure most people on here can relate to). Nonetheless, I'll give it a go and report back. You're absoluetly right - it's more so just about peace of mind and (hopefully) ruling out other neurological disorders..

Well if that gives you peace of mind you need to move forward, then by all means. I'm glad you realize this. It'll make doing the right thing that much easier.

[Peter Jordanson]

Hey lads,

I haven't check in here in awhile so I want to give a brief update. I finally got the results back from some tests i did awhile back and everything was normal.

Testosterone:
My testosterone levels were normal - they were actually high and potentially above the normal range but within the acceptable margin of error (I know this may be inconsistent with what others have experienced but keep in mind that my situation is a bit atypical - I dont have any ED issues or libido issues or muscle loss; mostly just genital pain and changes to genitals appearance)

Fertility:
My semen analysis came back completely normal on all 5 pararemters (e.g. motility, vicosity, vialbility etc.). I did this test because i developed a "subclinical" varicocele in the aftermath of fin (which i suspect had to do with fin tbh). This test was mostly for my own peace of mind.

Neuorlogical:
At one point i developed some paraethesias throghout various parts of my body; it's unlcear if this was related to fin or not because they came about long after i stopped the medication. These have subsided; they have essentially disappeared; may be they had to do with stress. All of my (very low tech) neoruological testing came back normal as well..

I just wanted to make this post because every now and then someone posts something scary and you never hear from them again and that can provoke anxiety in readers. So, on the positive side of things, I am fertile, my testosterone levels are normal, and the neirological testing didnt highlight anything too worisome.

On the downside, I am still very much dealing with the daily pain that i described in my original post as well as genital appearance concerns.

I will also note that I spoke with Dr. Keith Jarvi on the phone (from Toronto); my urologist refered me to him. He was the first physician ive spoken too who had any clue about the variable effects of fin. He acknowledged that all of my issues could indeed be a result of fin. Moreover, he said that people with pfs recover within 2-4 years and that there isnt much intervention that is offered to them besides the encouragement to live a healthy livefstyle.

Some of you may find the above statement a bit provocative; I am no expert on pfs and I doubt Dr. Jarvi is either. Nonetheless, the fact that he seems to be aware of people who have recovered at all is encourageing to me and that's the peiece i've decided to hang on to.

Anyway, that's all for now. I hope everyone is doing as well as possible given their current circumstances. I'll check back in again with updates at some point.
To end on a more uplifting note, despite the fact that this situation has had a pretty dramatic impact on my life (daily pain is no walk in the park as some of you probably know), it has made me a much deeper person, less easily pulled by the allure of shallow ambitions and distractions (e.g., im no longer drinking or into partying liek i used to me); i find myself seeking out stories of people who have overcome great horrors and atorcities in their lives, and i no longer view these stories as merely intellectual - their is a visceral component to my understaindg of them now. There is a part of my that is hopeful that all of this could lead to much greater growth than i ever would have experienced without pfs. Time will tell. The story is not over... sorry for the rant lol!

Cheers, folks.

[Cdsnuts]

It DOES lead to greater growth. You end up being WAY more masculine and generally more positive about yourself and life. You learn skills that you will most likely use for the rest of your life. TMO changes lives for the better.

Concerning the doc......we all know that people recover from this continuously, so that shouldn't have been a concern. I mean....were you looking for validation from the doctor? Do you not believe what's contained in this forum and TMO? I'm surprised he got the time frame correct...or close to correct. He must have been doing his homework. Regardless, we knew all of that here, before you went. And the only intervention that you need to bring yourself back to where you want to be, is sticking to TMO.

Keep at it. You'll get there.