Update for anyone who cares: I’ve mentioned before that I was going to see a doctor about getting tested for entamoeba histolytica. I met with the doc, he was very receptive and ordered a hormone panel for testosterone, estradiol, prolactin, FSH, and LH, and also threw in testing for histolytica and candida at my request. Unfortunately, this whole coronavirus thing has thrown a bit of a monkey wrench into my plans. I saw the doctor in my college town and was planning on getting tested in my hometown since my college closed down and went online-only. The blood lab I went to hadn’t received the order yet and I’ve been distracted/busy since then (I’m even procrastinating as I type this out). The earliest I’ll find time for testing is Monday the 6th, maybe Tuesday instead.
We do care, please keep updating us on your progress.
GUESS WHO FINALLY GOT THEIR RESULTS BACK.
Nothing too eventful, though. I didn’t have any signs of parasitic infection. Apparently my Vitamin D was abysmal. Doc suggested I start supplementing and it will be good for energy but not erectile dysfunction. Free T was within range but suboptimal. The test didn’t include total T or SHBG so the Doc ordered another panel. He said he’ll call me when he gets the results and suggested I start supplementing with L-Carnitine to boost my testosterone.
The doctor also offered PRP injections. He said that it entails getting a shot a month for three months and then the results should last for 12-18 months. He said that he’s only been doing them for about a year and a half, but that he’s seen great results that have lasted for 12 months. Downside is that it’s $500 per injection. Also, I’m worried about injections causing scar tissue.
I’ll probably give the supplements a try, but I’m not expecting much. I’m thinking about going to see Dr. Goldstein in San Diego, but I don’t know what he could offer that this doctor didn’t.
Someone asked me to post my test results. Is it really that important?
Minor update: got my follow-up test done. Total T was slightly above average (~700) and Free T was about average (~120). This matches up with the testing I had done around late January '19, when I was fairly fresh off of fin.
Doc told me he was planning on getting a GAINSWave machine and opined that it would likely be good for my symptoms (the physical ones, at least). However, he said it costs 30-35k and since we don’t exactly live in a bustling urban center then he’ll have to charge a pretty penny to make his money back. However, he did add that he was looking into getting a similar, more affordable machine.
I asked him to also look into Dr. Goldstein in San Diego, and Dr. Will Powers and his progesterone protocol. He agreed to and promised to keep in touch.
Saw the doc again recently. I’ve gained 20 lbs (up to 160 from 140 earlier this year). That’s probably on me though, not the fin. I’ve been drinking and eating like shit for the past few months. I need to get my shit together. Anyway, on to more important things.
Doc told me that he had contacted Dr. Powers’ office and they explained the logic of using progesterone (I can’t remember the explanation so don’t ask me what it was). He’s very willing to prescribe it to me but the downside is that since this is an off-label use, then we’ll have to start with a small dose and work our way up and tinker. I mentioned that taking it rectally allegedly increases absorption - I’m pretty sure Dr. Powers himself said that - but his office said nothing about it. I’ll probably give this one a shot soon but I need to figure out which end it’s going in.
I mentioned some other protocols I was interested in and he seems very willing to research them. One noteworthy one is HCG, but the FDA has apparently withdrawn it, making it very hard to acquire as none of his usual suppliers sell it anymore.
Another one includes the notorious methylprednisolone treatment. The doc was intrigued (or maybe perplexed would be more accurate) about how that might work. This one has a couple of harsh downsides. One, it’s very expensive. 5g (the amount that anonymous1968 took) will cost more than $800. Also, he’ll have to charge me for the infusion itself and he said that he thinks he remembers methylprednisolone being one of the ones that took longer to infuse. The other downside is that methyl steroids come with all sorts of nasty side effects of their own. He said that in his experience, patients are guaranteed to experience at least one side effect and opined that some of them are worse than what I’m dealing with now. I’m still open-minded to it, but it’s going on the backburner for now.
Minor update: I’ve finally started taking vitamin D, 125 mcg/5000 IU. I did tell my doc that I was worried it would be too much and could backfire, but he said to go ahead and take it daily, and we’ll retest my levels in 8 weeks. He also said he was going to reach out to Dr. Will Powers’ office for some more guidance, so I’ll probably be starting progesterone soon.
Another minor update: I recently started that protocol where you beat your meat 3-5 times a day. It’s a mixed bag so far. On the one hand, I feel like I’m more likely to wake up with night/morning wood, and to get natural erections during the day. On the other hand, it’s a lot harder to get full erections because my body seems to always be in a refractory period. I think I’m going to try to persevere with this protocol for now.
Another update: It’s been noticeably and consistently more difficult to get full erections lately. I suspect it’s the protocol backfiring. Maybe I accidentally made myself into a porn addict. I’m going to cut down a lot on masturbating for the next few weeks and see how that goes.
It’s been awhile since I’ve been here. I didn’t have anything new to report until recently. I just got over a bout of COVID. It wasn’t too bad: sore throat, cough, stuffy nose, runny nose, some fevers. Basically just felt like a weird cold-flu hybrid. It probably helped that I took meds and supplements like a motherfucker, as directed by my mom. She’s not a medical professional or anything, but she has been staying on top of the latest COVID research.
One of the supplements I took was a zinc lozenge (which also contained some vitamin c, vitamin d-3, vitamin b-6, and a “proprietary blend” of royal jelly, white willow bark extract, and slippery elm bark powder). I only took a couple, but around the time I took it, a new pfs-type side effect showed up. My ejaculatory force has decreased substantially; it just kind of falls out now instead of “shooting” out. And in the moments leading up to orgasm, I don’t even feel like I’m going to ejaculate. I feel more like I’m going to urinate. Maybe it was the zinc, maybe it’s just time making things worse, maybe it was COVID, maybe I have mild malnutrition since all I had to eat for a few days was some modest portions of soup, or maybe I just have to quit jerking off for a bit. Thoughts?
My mom also suggested that I do the paleo diet and take baby aspirins for the next few months to ensure a full recovery from COVID. Thoughts on that? I don’t think anyone here has ever had a bad experience with those before.
Edit: Also my sense of smell is gone. I’ll let you all know when/if it comes back.
Update: my ejaculatory force has been back to normal for quite some time now (a week or so, I wanna say). My sense of smell has been getting less worse, but it’s still not close to where it used to be.
I don’t really have an update, just something that I needed to get off my chest.
There’s a sort of morbid irony when people from the online hairloss community warn people to avoid this site like the plague because it’s allegedly bad for your mental health. I know this site has its fair share of nutjobs, but most people here are decent and the few crazies don’t get to me. What does get to me though and is bad for my mental health, is seeing so many people from the online hairloss community confidently (arrogantly really) deny that our experiences are real. And some of those people straight-up hate us.
My mood is stable and I have no anxiety or obsessions about my health (or anything else for that matter). It’s not in my head. I’ve had extensive blood panels done that have shown no signs whatsoever of hypogonadism. It’s not hormonal. I’ve had my penis felt up by many doctors who never found any signs of plaque or structural damage. It’s not Peyronie’s or anything like that. Am I supposed to believe that my sexual functioning just hit a fucking wall when I was 21 for no reason? Is there something that I’m missing? Something else I need to get to get tested?
And a lot of those who won’t dismiss or ridicule me will still downplay what happened and act like I’m some one-in-a-million fluke. I know most people take fin just fine, but the odds of getting persistent sides seem way too high for how devastating they can be. And I wish the online hairloss community would be honest about that.
Skepticism is understandable, but when else has it been okay to militantly disregard so many people’s lived experiences? Couple that with the emerging medical literature that suggests that PFS is real, and it feels like anyone who still adamantly denies its existence is ignorant or stupid, or maybe just plain evil.
I promise you I’m not crazy. And I’m not even hoping to sue merck for money either. I’m just a normal dude who wants his dick back. And it breaks my heart when people treat me like I’m asking for too much.
I haven’t been well lately.
I feel so… unsexual
My boners aren’t full. My penis feels so detached from my body. I rarely feel even slightly aroused
I haven’t been so scared about my condition since I first got off fin.
I don’t mean to be attention-seeking but I gotta keep it real with y’all, I don’t know how much longer I can go on like this.
You have no idea what your talking about my friend. Everyone is effected by this syndrome differently. I have photogenic proof of how my face was effected from this shit, it’s now almost reversed. I took Fin & Dutasteride at the same time every day for hair loss. It’s called combination therapy.
I had almost every symptom when I crashed and am at about 80% recovery a year later. Some people with PFS feel better from increasing androgens and some people get worse from it. I personally used to feel better on tribulus and androgen boosters. My depression would disappear, as well as low libido, however it didn’t last when I would quit so I stopped taking it.
Im sorry you reacted that way, but that doesn’t make it factual for everyone, and it doesn’t mean that people who feel better on them don’t have PFS.
There are people who have gotten better after 6 years. It’s not set in stone that you won’t recover just because it’s been a few years. Give it more time my friend and let go.
As upsetting as it is, it could be much worse, there are people who never recover from the mental sides, and live in hell every day. Stay positive, exercise, and don’t be obsessive. Stay positive!!
Today is the 4 year anniversary of when I took fin for the first time. There’s obviously so much that I wish was different. I’ve messaged my doctor again recently about Dr Powers’ progesterone protocol and I plan on giving it a shot if he still stands by it.
I got SMP recently, it’s kinda nice. I know this isn’t a hair loss forum but this is the closest thing I have to good news.
I’ve recently been working out regularly. I’m happy with my progress so far but I’m still a newbie. I’m dreading a potential plateau but I’ll cross that bridge when I get to it.
Also thank you @Itookfinanddutast. I appreciate your affirmations.
Things have been worse again. I can’t get full erections even while masturbating and my ejaculatory force is down. While I still hope for an improvement in my condition, I think I will have to accept that I am an asexual person now. Hopefully, I will still be able to find romantic if not sexual companionship.
I’ve been feeling more tired/foggy the past couple days and have had jolts of anxiety too. Hopefully, this is just some psychosomatic bullshit.
My sleep aid has been switched from Trazodone to Mirtazapine, though I wonder if it’s causing my fogginess, tiredness, and anxiety.
I have completed the new patient paperwork for Dr Powers’ office and may be getting treatment from them soon. But I think i’m going to reach out to Dr Goldstein and give HCG a shot first. Does anyone have any thoughts? I wanna try one protocol or both before I officially give up.
Stay away from the pharmaceuticals man. Both trazodone and mirtazapine can mess us up.
I think the trazodone might’ve worsened my sides but there’s like a dozen other things it could’ve been.
I’ve had to reluctantly take the mirtazapine for the past several nights but I’m gonna pick up some magnesium glycinate.
Also, I think I’m gonna get treatment from Dr Powers soon-ish since he does telehealth and there doesn’t seem to be any doctors in my area that treat PFS.
Btw, I finally came clean to my parents about my condition this past week. We’ve begun making donations to the network. Just 10$/month for now but we should be inheriting and making good money in the years or even months to come and more substantial donations will be made.
FFS, even the general practitioners in my area are booked up until May. This shit’s frustrating.
I would save your money and do your own research. There is no “PFS” doctor. Sure, some doctors accept it exists. But there’s no treatment they can offer, that you can’t do yourself.
Why are you interested in progesterone? Do you think you have estrogen dominance? I can’t tell by your posts if you have more physical (sexual) issues or it’s more mental/libido.
You say there’s nothing a doctor can do for me that I can’t do myself, so do you know a reliable source where I can get HCG or clomid or shit like that?
Anyway, it’s not the progesterone itself that interests me. It’s just the fact that it’s a doctor-developed protocol that’s been able to help at least a couple PFS sufferers. I know nothing’s guaranteed but maybe I can be one of them. And from what I can tell, the doctor is very open-minded/experimental man who cares a lot about getting results, but I’m still trying to figure out my best option(s).
My side effects are strictly sexual. Nothing mental/emotional except the loss of libido. Physically, I have ED which is approaching total impotence, physical alterations to my penis (got girthier actually), loss of sensation except around the corona of the glans, and loss of pleasurable orgasm.
HCG isn’t hard to obtain. I obviously cannot post any links. But even if you struggled to get it, if you have bloodwork to backup needing HCG. Any TRT clinic will gladly put you on a protocol.
From what I’ve gathered the past two years, for sexual physical issues, they generally stem from plaque/fibrosis built up in the penile tissue. At least when it comes to total impotence that’s resistance to PDE5 drugs. However, if viagra/cialis works for you, you generally can rule that out and something like a venous leak as well.
Physical alternations could come from the loss of 5ar activity in that specific tissue, or even lack of adequate blood flow to that region. Of course everything from everyone will always be speculation. But there’s a ton of reoccurring themes from other users to form an opinion on.
If your total T/Free T are “good” (nobody is near optimal, and a doctors “good” range is total bunk imo) you should look into your (sensitive) E2 and SHGB if you haven’t already. I get total impotence if my E2 is elevated, and loss of sensation/pleasure less orgasms. Adding high SHGB just makes everything worse.
In fact, personally, clomid provides me with all those symptoms. I wouldn’t ever mess with it.
If you feel all your bloodwork is where you should be (it’s really nice to have pre-fin bloodwork to compare) then you might be dealing with straight physical issues. “GAINSWave” (shockwave therapy), which has had success and might be viable depending if PDE5 work or not. But I would personally take large dosages of l-arginine, daily cialis, to promote bloodflow and erections constantly. Before attempting something like that.
You should also clean up your diet. Even outside of PFS, a diet goes aalllooonggg way for every aspect of your body, including sexual.
HCG could bring a libido, and will increase all downstream hormones. But there’s alot of smaller things you can do to kinda “debug” what might be your issue. Once you can narrow down what seems to work, you can move in to a more targeted approach. (Diet, exercise, pharmaceuticals, hormone manipulation, penile exercise, etc etc)
I plan on dieting. I’ve already been pretty healthy but I’m gonna go low-carb Paleo. Thank you for sharing your knowledge with me, I’ll be considering it.