Did Saw Palmetto ruin my life?

Member Stories
#21

Just an update. Bad day today. Consultation with my original endo, who’s only been treating my ED, because that seems to be the only thing he knows. Went like this:

  • When you see it works, you’ll get out of the vicious cycle.
  • I know high dose cialis works doc. It’s not just the ED that’s troubling me.
  • Depression can cause all kinds of sexual dysfunction.
  • I know. Can it cause numb, shrunken and deformed genitals though?
  • No.
  • Then, how do you explain this if you think it’s from my depression.
  • I and the urologist checked your genitals, it was all fine.
  • With all due respect, you don’t have a reference point. It’s radically different to me, and it happened over night.
  • Yes, but that’s all in your head. (verbatim) You want a cialis prescription?

I’ve had it with docs telling me what constitutes normal for my body. I’ve been looking down there for like 20 years. I know what’s normal and what’s not. I won’t be seeing him anymore lol.

Luckily, there are some docs who do believe me, and are looking for solutions. I just need to find one who’s willing to try experimental treatments and can handle it if their patient tries to discuss their own f*cking symptoms with them. I’ve seen so many already that I’m being accused of doctor shopping.

Positives:
I’ve had some improvement in genital sensitivity.

Negatives:
Shrinkage remains or seems to be getting worse (?). Beard grows out slower/less dense. Not sure if this is truly the case or whether it’s me imagining things. I’ve become hyper aware of my own body, which is a problem in itself.

Current regimen:

  1. Paleo diet with lots of (cruciferous) vegetables, good meats, free range eggs, real butter, walnuts, pecan nuts, bresil nuts, and some coffee and camomile tea. No alcohol.
  2. Cialis 5mg daily
  3. L-citrulline 6g, L-arginine 2.5g, L-carnitines 4g, low dose Selenium and Zinc, daily
  4. Black maca 5g eod
  5. Wellbutrin XR 150mg
  6. Will add probiotics soon
  7. Looking to maybe cycle some herbs, but very weary of adding anything. Everyone seems to react differently.
  8. Reading lots of positive stories and recoveries. Just to remind myself it is in fact possible!
  9. Weight lifting and cardio

Probably gonna try hCG monotherapy in the future, which looks very promising, thanks to the brave souls trying it out. But I would really like a doc to supervise me in this.

Mentally I’m up and down like a yoyo. Fighting the good fight, but fuck me, this is some nightmare we’re in.

#22

Hey guys,

I wish I could give a positive update, but unfortunately, I seem to be getting worse. I’m trying to find the courage to continue, but I can’t cope. My shrivelled numb penis looks very permanently dead and nobody even believes me. How is this even real?

Trying to hold on, but I’m close to giving up.

#23

I don’t really have the answers either but I hope there is some solace in the fact that you are not alone in this.

Very few of us have doctors that actually believe us.
I am also puzzled and powerless as my genitals have become pleasureless and my testicles have shrunk in these past two years since taking Finasteride. My symptoms have mostly been up and down but over time I feel there is a slightly upward trajectory. Stay hopeful that time will be kind.

Please be careful with zinc as it’s also a 5-alpha-reductase inhibitor. You could try cutting that one out of the regimen for a while and see if it gets better or worse.

#24

Well, another year has passed and still not cured.

I did have a couple of moments months ago where my symptoms improved significantly (less shrinkage, less numbness, more libido) but it never lasts.

As of this moment, my symptoms are:

  • Severe penile shrinkage (sometimes hard flaccid, sometimes empty and dead), apparent tissue loss and veiny appearance
  • Hourglass penis
  • Penile curvature
  • Genital numbness
  • Testicular shrinkage
  • Loss of libido (Never have the urge anymore, but I can summon some libido if I force it)
  • ED (has improved somewhat but I still take cialis daily)
  • no spontaneous erections
  • morning wood is very rare
  • Hands are super veiny and lost some tissue
  • my beard started to thin out last year but this seems to have resolved
  • high anxiety and suicidal depression, because of the issues above

For the record, I’ve done these tests:

  • Multiple blood hormone panels: no abnormalities
  • Penile and testicular ultrasound 2x: no abnormalities
  • color doppler: no abnormalities
  • sacral and lumbar MRI: no abnormalities
  • Uro-EMG 2x: first time some latency in the pudendal reflex, second time no abnormalities
  • several nerve conductivity tests: no abnormalities
  • pelvic ultrasound: no abnormalities
  • prostate exam: no abnormalities (psa was raised slightly though)

Current medications:

  • Cialis 5mg daily

I was on Wellbutrin last year but it did not help.

Psychiatrist and one endo diagnosed me with “acute body dysmorphia” (right, I developed a mental disorder in 15 minutes huh… BS) and “autonomic dysregulation”. For which they of course had no proof. Diagnosis of exclusion.

Last professor in endocrinology knew about PFS and gave me NO (mis)diagnosis (which I appreciated a lot more). But he basically said there’s nothing we can do, but go to therapy, stop focusing and hope for the best. His concern was sincere, however.

I do have another consultation planned in april, with a specialised unit in medical genetics who concern themselves with the “undiagnosed” but I doubt they will take me seriously.

So there it is. I’ve been suffering for 2 years now. I’m grateful for the effort the team has done in moving us forward, but I’m in a terrible place and pretty close to giving up. No one believes me, it’s so isolating.

Courage to you all.

Hope to update in a couple of months with positive news.

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#25

I recently consulted dr. Reisman (Amsterdam). He’s one of the few urologists/sexologists who recognizes PSSD (and PFS I suppose).

He kind of diagnosed me with PSSD due to my Wellbutrin use, but admitted it could have easily been both saw palmetto and Wellbutrin.

Anyway, he advised the following treatment:

1,000mg’s of L-Carnitine 2x a day
1,000mg’s of L-Arginine 2x a day
Buspiron 2x a day 5mg
Cabergoline 0.5mg 2x a week

Thoughts?

I know none of it can cure PFS, but can these maybe improve symptoms?

#26

Take l carnitine tartrate with alphapholic acid instead if you can find a vendor. I Usually take for gym but it can prob be used not for gym.

#27

updates, man? how are you?

#28

Honestly, I’m a mess.

I do experience windows where my symptoms improve a bit but it’s always short lived. Though I think the quality of the windows has improved through the years, it’s still a shit life I cannot cope with. We must fix this mess. I will never settle for a half life like this.

Most of the time, my dick is still numb, shrivelled and deformed, and I have no libido. ED was mostly a problem in the beginning but I take cialis 5mg daily and it helps a bit.

I didn’t do Reisman’s protocol, it’s all guesswork and a health risk without knowing what’s wrong in the first place, and it has a lousy track record.

I’ve visited more specialists in the past year, but as usual, all thought I was crazy or obsessed. Incidentally, it has become an obsession, how could it not when your health is destroyed and nobody can give you an answer. There is one clinic that believed me, but their treatment plan consists of neuromodulation techniques. I might try it.

I am however tremendously grateful for the shift this community has undergone in the last year. Fundraising, awareness, quality research… this is the way to go and it’s giving me a lot of hope to finally see the community come together like this.

Finally a light in the darkness.

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