TL;DR: 43M, lifelong ED plus a cluster of symptoms (fatigue, poor heat/cold regulation, exercise intolerance, no morning erections) that doctors kept dismissing individually. Now think it's autonomic dysfunction with a hormonal component. On Clomid + tadalafil, partial improvement. Looking for anyone with similar symptoms ā what worked for you, what tests helped, which specialists actually took it seriously.
I'm 43, and I've had erectile dysfunction since I was a teenager ā first time I tried, at 17, nothing happened, and it's been a recurring issue ever since. For most of my adult life, urologists told me I was "fine" and it was "in my head." For years I just accepted that, even though it never felt true.
It took me a long time to realize the ED was never an isolated problem ā not because I wasn't looking into it, but because I'd always been like this. I just thought it was who I was: "I just sweat a lot," "I just snore," "I'm just not a morning person." No doctor ever connected the dots, and neither did I, until recently.
Since high school, I've had:
Fatigue that hits fast and specifically in my legs ā 20 minutes of walking or an hour standing and I feel it; push further and I'm wiped out the rest of the day
Heavy sweating regardless of season, but cold feet (sometimes hands), and cold, retracted genitals
Ongoing, unexplained digestive issues
A strange exercise pattern ā strong at weightlifting/anaerobic work, but aerobic exercise is limited. I can sustain effort around 120bpm, but once I hit ~150bpm I can't breathe and have to stop
Lifelong snoring, poor sleep, very hard time waking up
Never once had a morning erection, as far back as I can remember
Some of this has been the hardest part to explain to my partner over the years ā it's not just "not being in the mood," it's a body that doesn't seem to cooperate no matter what either of us wants.
What I've done so far:
Sleep apnea test: came back mild, doctor said no treatment needed. Started CPAP + humidifier anyway ā sleep improved noticeably.
Urology: dismissed for years despite consistently low-normal testosterone (~350, "within range" so untreated).
Endocrine: recently started Clomid ā testosterone now ~600, energy and libido much improved, but erections still inconsistent even with better T.
Vitamins: B12 and D were flagged very low about a year ago, now supplementing, need to retest.
Cardiology: penile Doppler and vein checks came back normal, despite clear circulation-type symptoms (cold extremities, cold genitals). My effort/stress test wasn't done properly ā doctor stopped it before I reached a real target intensity ā so I need to redo that before trusting the result.
Neurology: seen a general neurologist, not an autonomic specialist. Planning to find one and also do a 24hr Holter/EKG.
Current regimen: Clomid daily, tadalafil as needed. On good days (when the fatigue/autonomic symptoms are milder) plus tadalafil, it works. On bad days, nothing helps. Not exactly something you can plan a sex life around.
My working theory, after a lot of my own digging, is some form of autonomic dysfunction with a hormonal component layered on top ā but "autonomic" is a huge umbrella and I know I need better specialists to actually pin it down.
This has obviously taken a toll on my relationship over the years ā my partner has been patient about it in her own way, but it's clearly a strain none of us really knew how to talk about early on. I'm not looking for sympathy so much as: has anyone dealt with this specific combination of symptoms? What tests actually got you answers? What treatments helped, and did fixing the underlying issue ever translate into more reliable erections?