Treatment Plan - Ongoing Progress

Hi all, I’ve been struggling with a constellation of issues, primarily sexual, for the past 5 months since quitting finasteride.

I have testicular atrophy, lowered libido, decreased sensation, lowered ejaculate volume, some erectile dysfunction, among other things.

Saturday, I tried having sex for the first time, and… it was mixed.

I kept getting semi-hard, hard enough to do it a bit, but not nearly full-on. Maybe I’m just a BJ guy, but when we moved to that phase it seemed to mostly work :man_shrugging:

But, she could clearly tell I was struggling, and I wasn’t able to go more than once.

The past 2 days I’ve been feeling mentally, emotionally, and very very sexually drained… ball ache, gut pain, just feeling terrible down there.

I decided 5 months is long enough for the “natural” method, because the atrophy has just continued, balls are surprisingly small, and overall I’ve little / no / marginal improvement.

So, after quite a bit of research, I’ve decided to start small:

  • Vitamin D3: 10,000 IUs Daily
  • Magnesium: 400mg Daily (Oxide, Citrate, Aspartate Mix)
  • Omega 3 Fish Oil

I’ve started using minoxodil again, because I stopped for several months and saw no change.

Plus, I was on minoxodil for several years with zero issues prior to taking Fin.

I’m also exercising daily, and I’m going to start being diligent about tracking calories and macros to meet my protein minimum, calorie maximum.

I’m also eating relatively healthy on weekdays, but weekends tend to be a free for all.

I have an appointment with a urologist on Wednesday, and I’m hoping he’ll give me a better sense.

Several doctors I spoke with suggested it was all in my head. This time, I’ll do my best to let them make the connection and won’t try to bias them with my beliefs.

I think, if the doc is good, the visual evidence of abnormality and correlation with ceasation of fin speaks for itself. So, basically I’ll play dumb, and might even pretend I want to go back on to make them think twice about dismissing it.

Anyways, all advice greatly appreciated, and I’ll try to keep you updated.

I strongly advise you to stop using minoxidil and certainly not go back on finasteride if you have any such intention (not sure if I got that right). It is not uncommon for patients who have had an adverse experience with an anti-androgen or 5-alpha-reductase inhibitor once before, to experience (significant) worsening of symptoms potentially permanently when they start using such a substance again (same or different substance, with long periods of time in between). I understand your desire to combat hairloss but it is not worth the health risk (minoxidil included).

Also, while I understand you want to convince your doctor(s)… You have no obligation to prove anything to them. It’s your job as a patient to report your symptoms and when you got them and it’s their job to figure out what’s going on. A doctor that tells you that it’s between your ears is incorrectly jumping to conclusions because he/she doesn’t have the answer. They will generally not be swayed by patients on the matter and I don’t think it’s worth trying to play out this kind of ‘mindgame’ you mention.

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Thanks for keeping everyone posted!

I second what @Wintermoon said - staying on Minoxidil is likely a very bad idea, as it has been associated with similar side effects as finasteride.

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@Tyec I third that recommendation of staying away from minoxodil. Many of us here ignored potential side effects of fin and other substances, or thought we wouldn’t be part of that minority that would be affected, or the side effects would subside. Fifteen years later, I still have the same sides.

I’m going to be blunt:

DO NOT RISK GOING BACK ON MINOXODIL

Nothing, especially not hair, is worth the side effects we’re going through. And if you think having sex seemed like work, you have no idea how much worse it can get. Sex may become only a memory.

This condition is thus far not treatable. It’s not even like cancer, where you may have a chance of getting better. There is no known “cure” or effective treatment for PFS, aside from a tiny handful of mostly unverified and un-repeatable “success stories”.

Let that sink in a while and ask yourself if you want to live the entirety of your life with it.

Meanwhile, report your condition to your doctor and whoever prescribed it to you. Not enough of us have, and that’s why this situation isn’t getting the attention it should.

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Ok thank you for the suggestion.

So I stopped minox and my shampoos a few days ago with the 1st comment and my adhedonia is actually worse than it’s been in a while…

Touching my penis basically feels like touching my leg.

My fear, coming off these additional mild anti-androgens is that they will flood my down-regulated receptors with androgens and cause damage…

Should I go back on minox and my shampoos and come off slowly?

Note: Prior to this post I’d been using minox for about a month or two.

People have mentioned tapering as a strategy before, but there’s no consensus on whether that’s a good idea. My own feeling is that it’s better to just get off everything and start the recovery process as quickly as possible.

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Having a really tough night… a few days ago, just before I posted this thread I lost nearly all sensation in my penis for the 2nd time.

The first was in May when I first realized something was wrong.

Been days now… and it’s just gotten worse. It’s like a rubbery extension of my leg… no sexual sensation.

Very similar to losing my sense of taste / smell when I had covid… just a wall.

I went to urologist yesterday… I should really post the transcript.

From the moment he walked in he was rude, condescending, and patronizing… constantly explaining how worrying can cause problems, asking me if I’ve tried pleasuring myself, and ultimately stating that in his 40 years of experience, he does not believe what I’m describing is possible.

He said a lack of sensation could NOT have been caused by finasteride and that it was a mental condition. He said he prescribes Proscar all the time for patients and they’re always fine.

Today, sensitivity is even worse, and tonight my hands are tingling and I have sensations similar to a panic attack.

Yet, really only the physical sensations, without the waves of overwhelming anxiety (kow).

Point is… idk what is happening to me.

He may be an expert in his field, but I’ve had my dick for 30 years, and I’m an expert in my body…

I should be able to feel sexual sensation… but I feel NOTHING…

It’s bizarre, because I have been feeling a bit better. Sensation never came back to pre-fin levels, but prior to Saturday I was doing OK.

Saturday, I had sex for the first time in ages… I really like this girl, and I did my best… but kept going soft mid-way through.

I explained the situation, and she was super supportive. I was still able to make things work out reasonably well, and I think we both had a good time.

The problem is… it’s the first time I’ve had that degree of hormone explosion in a long time…

Masturbation is one thing, but those feelings of real intimacy with someone I have a crush on are very strong.

I’m concerned it was too much for my already sensitive endocrine system. Now we have another date planned for next week, and I don’t know what to do.

I can’t find meaningful, honest advice anywhere. Doctors are all biased and refuse the existence of this condition.

Even some people on this site have their own limiting bias / group-think. I find pockets of people who refuse to consider anecdotal evidence when it’s basically the best we’ve got atm… it’s still observation, and there’s little reason to romanticize the gold standard double blind clinical trial.

It’s a bleak situation… I did manage to get a prescription of Viagra, so hopefully I can still perform next week.

Anyways… hoping I can sleep soon. I haven’t fully stopped minox because I was thinking maybe the crash was from too much sex hormine hitting sensitive ARs.

Last time I crashed it was because I STOPPED taking fin.

I wish so badly that I’d just never quit… I had no sides while on it. Prescription just ran out and it took nearly a week to refill…

Upon starting again, boom… no sensation in penis, like a switch.

I could continue ranting, but I should probably close my eyes and pretend to sleep now.

Hoping everyone else is having a better night.

Also, is there a live-chat room for people with PFS?

Night all

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Hi Tyec,

hope you found some sleep and really sorry to hear about your condition. I think 99% of us know the rubber dick sensation, when it suddenly feels like every other part of your body but not your penis.

I agree with everyone saying you should stop Minox. The harsh reality is that you’ve been poisoned and you have to get rid of the poison and start healing. Also, Doctors, as you’ve seen yourself are a waste of time and money. Even the good ones that know our condition can’t do more then make tests and then have no clue what to do. They’re guessing just as we are, but with less experience than the shared knowledge of this forum. The good news is: People have gotten better, including me, so the condition can be reversed.

Hope you get that girl and as much support as you can for the journey ahead of you. It’s time to start fighting. Best wishes,
Jonny

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Hi All

Just an update

I’ve been on minox again, and I’ve noticed my testicular atrophy really take off

It’s insane… I’ve now tapering off minox and the shampoos and realize this is a very serious problem

My testicles are substantially smaller than they used to be and I have no clue how to get them back.

Going in for a massive hormone panel tomorrow, but my endo has no idea what this syndrome is.

Should I request to go on hCg? I’ve heard there are supplements that can mirror LH?

Wow having anxiety almost panicky recently, superr low sexual sensitivity…

I wish I’d listened and never even touched minox… EVERYONE on Tressless insists it can’t do anything.

Howw is there such a massive divide here? Obviously this is affecting my body physically … I have photographic evidence of the atrophy yet… people don’t even believe it exists??

It blows my freaking mind, and I wish I knew what the hell to do now… all while still trying to be with this girl.

It’s such a stressful scenario

Well 90% on Tressless can’t read a scientific paper and understand it and 50% would transition just to keep their hair.

Maybe not the best place to take recommendations :thinking:.