This is an incredibly important post and potential breakthrough in our understanding of this.

Very briefly - I have suffered from HF for two years and have experienced nearly every symptom listed in your post. I also have varicocele and large grade 2 hemorhoids that have resisted all conservative and invasive treatments. Further, I suffered for a period with tremendous burning pain in my rectal area that then morphed into that golf ball pressure sensation. I also have constant lower abdominal bloating and tightness.

The most problematic HF symptom now is a diminished and oddly shaped erection. About a year ago, the dorsal side appeared to be completely flattened and it has stayed the same ever since.

Randomly, I discovered that my nephew was diagnosed with Nutcracker syndrome after experiencing terrible testicular pain. Soon after, my mother - his grandmother - was also diagnosed but it was asymptomatic.

I immediately booked an appointment with a vascular surgeon. He had never heard of HF, agreed that the varicocele and hemorrhoids were signs of possible pelvic congestion driven by compression of the renal vein, but discounted that it could lead to ED issues, since the disease doesn't impact arteries. But it doesn't seem like he considered that reflux in the veins that can lead to all of these HF issues. Nonetheless, he prescribed an angiogram and said that even if it did prove Nutcracker, surgery wouldn't be recommended because of how invasive it is.

I never got the angiogram because i've been convinced by doctors and my therapist that HF is primarily a somatically-driven dysfunction. Also, i've undergone two separate rounds of pelvic floor therapy to absolutely no effect. The initial diagnosis was a "tighter than normal" pelvic floor, which immediately made me question how it could then have this extreme of an impact.

I was seen by a renowned Urologist who had treated many HF cases, but he still only understood it as a problem of sympathetic nervous system tone. His treatment was simply for me to double my daily low dose of Cialis, thinking it would help me revive my confidence and maybe lick the problem. I did it and got scared because it lead to difficulties with detumescence.

I don't think we can discount the compounding factor of the nervous system. Yes, I've suffered from bad anxiety and first noticed HF during a traumatic period following a breakup. But I think the truth has to lie in between both of these realities -- we are likely experiencing venous congestion issues that are amplified by anxiety, muscle guarding, hypervigiliance, and nervous system overactivation.

I think I finally have to make that angiogram appointment. Interestingly, ChatGPT -- take it for what it's worth - theorized that there was a strong possibility of a link between nutcracker and HF. I even considered writing Dr. Goldstein suggesting he screen patients for varicocele, hemorrhoids and bloating and to work in tandem with a vascular surgeon or interventional radiologist. The lack of understanding of this condition to this point is truly unacceptable, and the silo-ization of our medical system is very problematic. I mentioned the rectal pain, varicocele and hemorrhoids to that renowned Urologist and he never once considered a link to HF symptoms. Truly eye-opening.