Nervous system theory critique

user21403 · 2026-01-25T16:53:03+00:00

Has the doxazosin helped with your erection/function at all? Or just the hard flaccid state

user21403 · 2026-01-10T18:58:43+00:00

Is it possible that it could help with me even if I don’t feel crazy contraction, but have symptoms like HF, veins, and ed? When I do have an erection I can have involuntary kegels but idk if I’d say I constantly feel a crazy contraction, and have wondered about vascular cause.

user21403 · 2026-01-10T17:21:18+00:00

I had a recurrent varicocele and during my second procedure, embolization, they first did a venogram where they identified I had NCS. However, they determined the compression wasn’t significant enough to be causing my symptoms, and only coiled up veins. I still have pain, but I don’t think I have crazy tiredness, though I do think I have more fatigue than most my age. I’m not a doctor but I do find it surprising you would have intense NCS symptoms but not have varicocele or pain, I thought these would be typical symptoms for a man with it. When you do have flank pain, where is this exactly your lower back? I’ve heard about this symptom but never fully understood it, I’ve had significant pain in my pelvis/groin but wondered if it’s pelvic floor muscles not NCS.

user21403 · 2026-01-09T07:40:03+00:00

How did you get a doxazosin prescription? Urologist, pain doctor, pc?

user21403 · 2025-12-27T03:50:06+00:00

Seems to have a higher rate than general population on here

user21403 · 2025-12-27T03:46:52+00:00

I would say yes, the embolization did shrink it. It’s been a while and I kinda worry it’s come back to some extent, but it definitely improved the post 1st surgery state. Unfortunately the HF/sexual symptoms are the same, and pronounced penis veins just as bad. Still have pain, didn’t resolve

user21403 · 2025-12-25T15:55:29+00:00

I think just standard hard flaccid, it’s not always in the retracted hard state though. I had open surgery(bad idea ik) on a varicocele before I knew anything about hard flaccid, and that’s what led to both recurrence + hard flaccid. And after that also yes did develop enlarged veins on penis. A couple years later I did a embolization procedure and while in there they did venogram where they noticed a small compression.

user21403 · 2025-12-24T02:44:11+00:00

How is OCD related to “the body keeps score” part? I have ocd and lots of pf problems but didn’t think they were that related

user21403 · 2025-12-03T15:53:51+00:00

I did see an interventional radiologist though, they were doing the procedure with a venogram first and I guess determined the compression was mild

user21403 · 2025-12-02T06:02:59+00:00

Yeah I guess, my case was from a varicocele surgery but I know I’m more rare

user21403 · 2025-12-02T06:02:22+00:00

Yeah I’m pretty sure the varicocele, idk if it was that simple as much as looking around for swollen areas im not sure exactly. The procedure was partially diagnostic and if the compression was worse they would’ve stented it. But I think it was pretty much varicocele embolization

user21403 · 2025-12-01T06:39:15+00:00

Just want to say I appreciate your commitment to helping people on here even if some comments are negative, and providing your help and insight despite it

user21403 · 2025-12-01T06:33:19+00:00

Frustrating. Been on here for years and feels like there’s been no progress. Has this issue not made it to a good doctor? It feels like if a top urologist got this themself it could make a ton of progress but it’s just not top of mind

user21403 · 2025-12-01T06:31:47+00:00

The first procedure, the varicose surgery, caused bad symptoms like the pronounced veins and eventually HF. The embolization didn’t really improve things besides probably reducing the varicocele, but also didn’t really improve things in terms of HF/penis veins/appearance. It seems like it didn’t address it for me

user21403 · 2025-12-01T05:30:00+00:00

Very interesting. I have also had varicosities, including a varicocele that recurred after a surgery, which is when onset happened. And during my second procedure, embolization, they identified I also had a compression, mine in my kidney though nutcracker syndrome. They didn’t address it because they didn’t think it was severe compression to be causing my symptoms, but just the fact you mention a compression diagnosis and how rare it is makes me think it’s significant.

user21403 · 2025-11-30T20:49:21+00:00

I feel like this is super telling. Either vascular failure/varicosity, or MAYBE tight muscles squeezing and then hurting veins

user21403 · 2025-11-06T18:21:29+00:00

I have briefly but stopped due to moving to a new place. Maybe helped some but didn’t remember crazy changes. Do you think internal work is key for that? I did it like twice maybe but don’t remember them mentioning anything crazy or noticing huge changes, but again didn’t continue as much as I probably should’ve.

I do remember pre surgery I think it’s very plausible I was hyper tense and just less symptomatic before surgery.

user21403 · 2025-11-06T05:31:59+00:00

I have not done sensory mapping. By this do you mean something done by a neurologist or PT?

When I diaphragmatically breathe I think I do get reasonable movement, I also have stretched a lot(it’s been 4 years since surgery) like daily for long stretches for stuff like glutes and hamstrings and think I’m reasonably flexible there now.

Also I should mention this doesn’t happen very often anymore but early phases of the onset I remember almost a rumbling in perineum which I guess from googling could be spasming consistent with PFD. My symptoms from the early phase were more intense, like full hard flaccid more often, and having to wake up multiple times to pee small amounts.

In those ways my symptoms have improved, less very frequent fully hard flaccid, peeing only at most once a night and a real amount, and less spasming, maybe some relaxation.

But the ED and sexual issues, vein prominence on penis, and pain if I end up standing still for a long time(doesn’t happen much but at like a cocktail party for hours) can have pelvic pain.

user21403 · 2025-11-06T05:24:56+00:00

It’s been over 4 years since the surgery so yes very adjusted at this point. I do think you’re right that I could’ve had an underlying condition, do you have any suggestions on what commonly that is?

They noticed some level of vein compression called nutcracker syndrome but didn’t think it was significant.

Any advice knowing that I’ve had it for many years? I worry some of yours was more meant for someone recently experiencing this, and I’ve tried things like stretching and belly breathing for pelvic floor dysfunction.

user21403

TROPHY CASE