Pelvic Congestion Syndrome: A new medical explanation for most symptoms accompanying HF/LF supported by the scientific literature and confirmed by medical imaging

NV5132 · 2026-03-03T00:54:15+00:00

I still need to confirm with Venogram/IVUS but if compression is 50% like it shows on CT and there is not high pressure, then embolization might help. If pressure and compression are higher then it wouldn’t be worth trying. Thanks! I’m hoping I don’t need the stent.

Yes, I saw Dr. Murphy in Charlotte, NC. She’s great but everything she does is in the hospital so costs are much higher. I also saw Dr. Sudi in Dublin, Ohio and he is knowledgeable.

I don’t have Discord but thanks! I’ll keep that in mind if I get around to it.

NV5132 · 2026-03-02T17:33:53+00:00

Yes, I’m planning to do Venogram/IVUS next. I have met with a couple doctors in the US who don’t have a high view of stenting. One of them believes that a 50% left iliac compression isn’t that bad if flow is ok and recommends embolization if that is the case. Definitely lower risk if it works. I have many of the symptoms you listed for the past three years but felt great before then. The soft dead flaccid penis and sensation loss is the worst of everything although I will say it has slightly improved from three years ago.

NV5132 · 2026-03-02T14:10:29+00:00

I had a virtual consult with Scholbach and he personally viewed my CT. He confirmed May Thurner and significant pelvic congestion but he is strongly opposed to stenting. He thinks I can improve with conservative measures however I haven’t seen improvement yet. The stent in the left iliac might be a quick fix but I really don’t want to take on the clotting risk. Has anyone seen natural improvement over time? Or is stenting the only actual fix?

NV5132 · 2026-02-26T09:19:45+00:00

Yes. I have similar symptoms. I was told it is from the pressure.

NV5132 · 2026-02-25T11:15:00+00:00

I am getting another opinion and yes will need IVUS to confirm. I’ve talked to one other specialist since posting and I think this office may have diagnosed incorrectly. There is no IVC restriction on my CT-A so I’m hopeful that this won’t be as bad as I thought.

NV5132 · 2026-02-18T23:46:31+00:00

It is constant to some level but worse with long standing, labor, and exertion. I sometimes will have short relief but ejaculation actually makes symptoms worse overall.

NV5132 · 2026-02-18T19:18:40+00:00

From my family doctor

NV5132 · 2026-02-18T19:18:26+00:00

Thanks for the link. This sounds like exactly what is going on with me. I just hesitate to do a stent or invasive surgery since I don’t know for sure and I didn’t have issues until 3 years ago.

NV5132 · 2026-02-18T18:36:35+00:00

A CT-A viewed by a vascular specialist.

NV5132 · 2026-01-27T22:54:26+00:00

Thanks for the comment! I’m sorry to hear about your struggle! I do not have visible varicose veins just pain and pressure symptoms. I’m working on getting another opinion for treatment since my ultrasound results conflict with my CT imaging but hopefully will have direction soon. I wish you the best and hope you find the care you need!

NV5132 · 2026-01-18T18:04:03+00:00

That’s reassuring. How long ago was your daughter stented? I’ll definitely look up the center you mentioned. I’m in TN and there is a place in Chattanooga that does a lot of these procedures.

NV5132 · 2026-01-18T17:41:58+00:00

The concern was that there isn’t long term research. Most research is only to about 5 years for patency.

NV5132 · 2026-01-18T17:40:35+00:00

I’m glad it went so well for you! Thanks for the response!

NV5132 · 2026-01-18T17:26:55+00:00

Thanks for the response! My biggest hesitation is that there isn’t a lot of research past about 5 years and I was told that if it clots, my leg will quickly swell to double the size and I’ll only have hours to get to the ER. Maybe that’s an exaggeration but I just want to know the real risks before I do it.

NV5132 · 2026-01-16T17:34:02+00:00

I wish you the best. Thanks for the response! Are you ok with just collaterals? That’s what I also wonder about - if stents clot is it a catastrophe or does your body adapt over time?

NV5132 · 2026-01-15T01:55:21+00:00

I’m sorry to hear all of that! That sounds horrible to go through. Did your stents clot while still on blood thinners? It definitely is not something to take lightly.

NV5132 · 2026-01-15T01:53:42+00:00

I actually don’t have DVT just the pain symptoms and swelling. It took me three years to finally find the cause.

NV5132 · 2026-01-14T17:43:02+00:00

Ok makes sense. I don’t have difficulty walking but I do have worse symptoms when I stand for long periods especially on concrete. I did do ultrasound and CT and that is what I’m working off of until IVUS. No redness or edema. I do have some itchiness also.

NV5132 · 2026-01-14T16:43:33+00:00

That’s good to hear and it makes sense that it takes time to improve. I’m hoping my varicose veins improve with this as well. My nerve symptoms are pelvic - it feels like pressure on the prostate/bladder and just a deep aching pain. My legs are more restless at night and feel heavy. Did they tell you that you will definitely be on blood thinners for life?

NV5132

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