My experience so far. Anhedonia and PFS double-whammy

Member Stories
#21

3.5 month update

Improved
Libido - Improved a little bit. About 50% of what it was previously I’d estimate. Still no morning wood.
Started going to the gym again and noticed more muscle soreness compared to last time.
“Hot flashes” during night have largely stopped.
Dry skin/shedding around penis has improved to where dead skin isn’t constantly shedding. Still dry.

Same:
Still more of a belly, but feminine fat deposits have not increased.
Constipation - still have consistent “poo pellets” unless ate something that caused very soft stool.
Leads me to believe the cause is due to the smooth muscles of the abdomen weakening.
Testicle shrinkage - Still about 2/3 of previous size.
Muscles haven’t improved or gotten much worse.

Worsened
Facial wasting - Has continued to progress! Less facial fat, thinner neck muscles, much more wrinkles under eyes, crows feet when smiling. I look like I’ve aged 7 years in 3 months. Family members also noticed marked changes compared to pictures of me from 3 months ago.
Skin looks looser in general. Some pigmented areas appearing on forearms arms.
Fatigue - Get sleepy a ton more easily. Worst symptom in terms of quality of life.
Much more frequent urination, at least double. Probably enlarged prostate.

Treatments: Had blood work done and everything including testosterone came out “normal”

Overall, I’m glad that I haven’t followed the timeline of some unfortunate others where libido plummeted after 3 months. The facial changes and prostate issues show that this is still progressing though. The worst thing is still the fatigue and loss of motivation/drive to do things. Praying my body can beat the odds and recover somehow. I hope everyone here is doing the best they can managing this shitty condition and spreading the word. I’m happy to report I’ve warned off 2 family members from taking this poison.

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#22

Hi @JasonM

I’m sorry to hear you haven’t improved over the first few months. I would repeat the advice I give to all new members though in please give it time. In the first 6-12 months, I was an absolute shell of a human being and didn’t think I’d make it past that first year.

Many patients notice improvements after that first 6-12 months, however, and noticeable improvements. For me, these came naturally with time, including improvements with fatigue and the night flashes you described. Unfortunately, this is a complex disease and the only way we’ll all collectively find a way out is through research, which we’re busy organising currently.

There is a lot to be hopeful for, and a lot of it is right around the corner. Please take care of yourself as best you can.

#24

Thanks for the support. Very glad to hear you have improved naturally with time. Research is certainly important, and the work that has been done so far is fantastic. Equally important unfortunately is PR. There’s so many studies that simply get ignored by powerful interests. (ie. There is ample high quality evidence that fluoridation of water has negative neurological effects, but the ADA has billions of dollars and a very firm grip on the FDA)

I actually think the best thing that could happen unfortunately is some well-known Zoomer influencer or other mainstream celebrity getting PFS. I mean, it undoubtedly has already happened. But the stigma of the symptoms and obscurity of PFS would likely cause them to not get in touch with this community. I think devising a way to reach out to find higher profile victims would be of great benefit.

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#25

That will be a big part of the next phase of our organisational strategy: increasing PFS Network’s visibility. It is entirely likely with the proliferation of this drug through Keeps, Hims, etc that an influencer will get PFS one day.

We as a community need to change that stigma so they feel more comfortable coming forward when it happens. The six patient stories on our YouTube, and the further nine podcast episodes to be released soon, should help with that. Every patient can play their part.

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