First Post - 18 months after Saw P. Grateful but still in search of improvements

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? USA

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) google search

What is your current age, height, weight? 34, 5’ 9’’, 140

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? saw palmetto

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? app. 500mg/day for three months

What condition was being treated with the drug?hair loss

For how long did you take the drug (weeks/months/years)? 3 months

How old were you, and WHEN (date) did you start the drug? 32 - started mid- September of 2019

How old were you when you quit, and WHEN (date) did you quit? 32 - stopped early December

How did you quit (cold turkey or taper off)? tapered

How long into your usage did you notice the onset of side effects? 2 months

What side effects did you experience that have yet to resolve since discontinuation?

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[ x] Loss of Libido / Sex Drive
[ x] Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections - better now
[ x] Watery Ejaculate - better now
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency - better now
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
[ x] Suicidal Thoughts - better now

Physical
[ x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
[ x] Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
[x ] Prostate pain
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
[x ] Frequent urination - better now
[ x] Lowered body temperature

Other (please explain)
Some major and sudden intolerances with 5AR foods described in my story. Definitely interested in some feedback/advice

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? So far just healthy eating, regular exercise, meditation, Vit D and Magnesium

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

Hi all,

This is my first post and I am seeking out some help/advice down at the bottom of my post.

But before I get into my stuff I want to just say thanks to everybody here that works to maintain a steady stream of optimism and support for the other forum users. There have been several periods when I haven’t been doing well with our condition and I’d resort to coming onto the forum and end up feeling better and hopeful. So thank you. I know it takes a lot of effort.

My experience

I took a saw palmetto supplement for about 3 months in 2019 and have been dealing with symptoms since stopping. I don’t actually know how much SP was in the supplement because the SP was mixed with other things. But it’s safe to assume I was taking in about 500mg a day for about 3 months. I know that’s over the recommended dose. For some insane reason, I trusted that the manufacturer wouldn’t use an unsafe dosage or I was willing to ignore it because, at the time, I was so embarrassingly consumed with the fear of hair loss. Also, I probably naively thought, “as long as I’m not taking finasteride, I’m fine.” I thought I had done my research. Really tough to find negative reports on saw palmetto until you really start looking for it.

I stopped taking SP after three months because I started to feel occasional shooting pains in my lower pelvic region. One time the pain shot right down to my right testicle. That’s when I quit the supplement.

This has been a difficult two years but I must admit that I have felt lucky compared to some things I have read on here. I’m grateful that I’m able to be excited about work, meditate, exercise, be with friends and family, focus on music and other projects, and just being excited about life outside of sex. This is an up and down process for me. When I’m down, I try to practice a positive mindset and just remember that no feeling is final. We just gotta keep going.

I experienced a lot of scary things in the first month after stopping. Watery ejaculate, suicidal ideation, brain/body disconnect, insomnia, no energy/motivation, nausea. Things got better (thank god) over time but here are the things that persisted or developed over the past 18 months:

Sexual

-lowered libido - (I oscillate between 3-6 out of 10. During sex it can get up to 8)

-less consistently strong erections - often requires consistent manual stimulation

-occasional hard flaccid

Skin/circulation

-noticeable loss in skin elasticity

-cold hands and feet - very pruney fingers in the winter. Hot water will plump them back up temporarily.

-loss of hair on tops of feet and backs of hands

Miscellaneous (and weird) but worth mentioning

-haven’t gotten a simple cold/flu in the past two years (although my Moderna vaccine really knocked me out for two days)

-my nose often starts to run when I eat a meal

-hair loss on my head has stopped (I think)

-hair grew really quickly on lower neck and underside of my arms

-My hair went gray very early in my life and I’ve noticed some of those gray hairs have gone dark again.

-Sometimes I’ll get a shooting pain in my scrotum and if I inspect where that pain occurred, I notice a single white hair is in the exact spot where I felt the pain that wasn’t there before.

Newest development (looking for feedback/advice)

-During the first year of recovery, I would consume coffee and alcohol very occasionally. When I did, it was totally fine. Now I’ve developed a surprising intolerance to caffeine, alcohol, watermelon, mango, tomato sauce, chocolate, asparagus, avocados, and some nuts - yes, all 5AR inhibitors, and all within the past six months. When I consume these things, I feel a strange tickle or itch in my lower pelvic area, and sometimes it develops into a shooting pain to my testicles - leaves me with a dull ball ache for the next few hours.

Are people experiencing this kind of thing when they have foods they are intolerant to? What could be the cause of this sudden change? Why is my body only just now starting to reject all of these 5ar foods? Physiologically, do we know what’s happening here? These sensations hit me within like 15 minutes of consuming the foods, which seems fast. Could it be helped with some attention spent on my gut?

Luckily, the pain usually gets better within 3-4 hours. I am concerned though and the urologist I spoke with about this had zero thoughts as to why this was happening.

I haven’t taken any other supplements or drugs during my recovery except for Vitamin D and Magnesium (both not very consistently). Last week I did consume two very small sorghum pancakes and it made me feel a bit dizzy, a bit flush, and I got hit with one shot of pain in my left testicle. Haha, it wasn’t a great experience. I was pretty surprised how bad it hit me after two small pancakes. But I recovered and got back to my “baseline” about 5 hours later.

Even though it’s tempting, I’m still trying to avoid supplements, T-boosters, other meds, etc because I’m still pretty terrified about adding anything like that to my body. Also, I’m very lost with what might be an androgen issue, Autoimmune issue, hormonal issue. I think I have it all to some degree. But I’d still be interested if things I’m describing lines up with anybody else and I’d be interested to hear what worked for you.

Thanks for listening. I told myself I’d be brief but it’s pretty difficult with this sort of thing and it’s rare to be in a space where you have confidence that you’ll be believed and taken seriously. So thanks again and best of luck to you all.

Pat

Hi @pat

Welcome to the forum, and I’m sorry you’re experiencing this condition. In terms of what’s going on in PFS patients, the best possible answers we have right now are the recent study results published by Baylor which demonstrate AR overexpression in patient tissue. In terms of why you’re having difficulties with those foods, as you mentioned, they are all 5ARIs to some degree, and they will continue to push on the same mechanism/trigger that caused these problems in the first place. Unfortunately, that will most likely continue to be the case, so I would avoid anything anti-androgenic.

Our group is working to organise research to further our understanding of what is occurring in patients and why, but for now, your best bet would be to avoid anything anti-androgenic.

Hello pat,

Welcome to Propeciahelp. As Sugarhouse mentioned, it is best to be careful with your diet and avoid anything that makes you feel worse.

Also, the reality of the problem is that it is too complicated for any of us to fully make sense of with just discussion. We need to get research done (and to help research along, we need to raise awareness of this condition). To find out how YOU can contribute to achieving this, please check this topic: New user? START HERE

If you have any questions or would just like to speak to someone, please reach out to me to set up a call.

Thank you for the responses @borax and @Sugarhouse. I really appreciate it. I’ll be on and off of the forum and update if anything noteworthy with my condition comes up or if I have any questions. I find it’s better to not spend too too much time here.

And I’ll be sure to do what I can to help move things forward re: awareness/research.

all the best

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