High-Flow Male Pelvic AVM: Recurrence after 3 years & conflicting advice on heavy lifting

Types of Avm's Pelvic & Uterine AVM
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Hi everyone, joining from Italy.

I’m hoping to connect with anyone who has experience with peripheral AVMs, specifically in the pelvic/abdominal area, and navigate the confusing world of lifestyle management.

My Clinical Background
I work as a personal trainer. Back in 2022, after a period of intense athletic prep for a marathon and heavy weightlifting, I suffered a severe hemorrhage (hemospermia) which led to my diagnosis: a high-flow pelvic AVM. The congenital nature was clear in hindsight—I had the exact same symptom during my very first ejaculation 15 years prior, which then completely vanished until the heavy training triggered it again.

The Recurrence (2022 vs 2025)
I had my first embolization in 2022. Unfortunately, my medical team didn’t clearly explain how common AVM recurrences are, nor did they emphasize the absolute necessity of strict, yearly follow-ups. Because of this due to some family problems I did not take the matter seriously and I returned for a check-up after two years instead of one, as advised.

The result? The AVM had returned, grown larger, and expanded to involve other pelvic organs. I am now facing a new, complex treatment plan with at least two more embolization procedures (using coils + Onyx for the venous side, and soon I will undergo treatment for the arterial side).

**My Main Struggle: Physical activity **
Beyond the surgeries, my biggest challenge right now is occupational safety and lifestyle management. Because of my background in fitness, I’m getting wildly conflicting medical advice in Italy and reading about other experience here on the topics about sports and physical activity (Valsalva maneuver, heavy lifting, running..) and the risk of rupture due to abdominal intra-cavity pressure.

I have a few specific questions for this community:

  • Has anyone here dealt with a pelvic/abdominal AVM (especially male)?

  • How were you told to manage physical activity? Were you given strict weight limits?

  • Has anyone had to change their career or seek specific occupational safety protections at work to avoid heavy lifting?

I would really appreciate hearing your real-life experiences. Thank you all for reading, and stay strong!

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Hi there!

I am a 50 year old woman who lives in California USA. I also have a massive high flow pelvic AVM. I just had my 3rd embolization with coils, plugs, glue. My interventional radiologist said I’ll need at least one more. I’ve never been told I needed to change my physical activity, but unlike you, my career is in an office and I do not lift heavy. I’ve never hemorrhaged but found out about the AVM through many tests once a cardiologist finally listened to me and it was discovered I have high output heart disease as a result of the AVM. Anyway, sorry I can’t give any advice on the weight lifting, but just wanted to let you know someone else is out there with a high flow pelvic AVM causing all kinds of problems.

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My feeders are from left internal illiac and inferior mesenteric arteries. ive had about 15 embolizations from Dr. Robert Rosen at Lenox Hill. 1990 -2008. He was meticulous and explained things well. i have no weight, career, or exercise limits. i have been virtually asymptomatic since my last procedure. If there’s anything that would make you feel better, thete are only 20-30 of us on this planet with male, pelvic AVMs. If you are symptomatic or need a doctor, i suggest Dr. Rosen. He saved my life!

Best,

Tom

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Hi Tom,

It is amazing to hear that you have been virtually asymptomatic since 2008 and have zero exercise, career, or weight limits! That gives me a massive amount of hope.

I am definitely going to look into Dr. Robert Rosen at Lenox Hill, especially since he clearly understands the complex hemodynamics of our condition. However, I have two major questions I was hoping you could share your thoughts on:

The “US Healthcare” Cost Factor
Since I live in Europe (Italy), my treatments are currently covered by our national health system. Over here, we have a terrifying (though probably realistic) idea that the US healthcare system is astronomically expensive for international patients paying out-of-pocket. Do you have any idea how foreign patients navigate the costs for complex embolizations and potential hospital stays at Lenox Hill, or what the financial reality of that looks like?

The Arterial vs. Venous Approach
I noticed you had about 15 embolizations over the years. In my case, my first treatment in 2022 only targeted the arterial feeders. My doctors didn’t explain much, and because they left the venous side open, the AVM “stole” more blood, expanded to other organs, and came back larger. I’ve been reading recent medical papers stating that the modern approach for pelvic AVMs is to attack the venous side (the dominant outflow vein) first to prevent this exact expansion. During your 15 treatments with Dr. Rosen, did he ever discuss this venous vs. arterial strategy with you? I’m very curious how he managed to fully stabilize yours over those years.

Thanks again, Tom. Your message really made my day and gave me a perspective I desperately needed.

Best,
Adriano

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Hello my friend - heres what i found

yes, you can receive emergency medical treatment in the U.S. without insurance, regardless of immigration status or ability to pay. Federal law (EMTALA) requires hospitals with emergency rooms to screen and stabilize patients, but you will be liable for the costs, which can be high. Non-emergency care is harder to access and usually requires.

i wouldnt worry about cost. I doubt they will send the healthcare police after you as they don’t exist. Smart move comtacting Dr. Rosen. He is the closest thing to God in my opinion.
Regarding surgery, they embolize arteries not veins. Arteries flow into veins. Whereas the veins cause the pain, if you block the arteries their corresponding veins go away. My problem or a problem with AVMs, your body thinks the arteries beling so they actually grow back. That’s why it took so many surgeries. Call Dr. Rosen’s office. Tell him Tom Y. recommended him. He knows me. He is THE expert in the field. He was an expert back in 1990 when i had my first embo. He was with NYU Medical center at that time but now is with Lenox Hill in NYC.
Any other questions let me know. My pain was a 10 back then and my pelvic AVM was HUGE. Now, virtually asymptomatic

Best
tom

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Hi there,

Thank you so much for taking the time to reach out. Even though I am so sorry you have to go through this, it brings a lot of comfort to know I am not the only one fighting a massive high-flow pelvic AVM.

Discovering your AVM through high-output heart disease must have been terrifying, but I am so glad your cardiologist finally listened to you! It makes complete sense hemodynamically—these high-flow AVMs act like a giant vacuum, forcing the heart to work overtime to keep up with the blood steal.

Regarding the physical activity, it makes sense that your doctors haven’t emphasized lifting restrictions for you, since you haven’t suffered a hemorrhage and your daily life in an office doesn’t involve heavy strain. My situation is a bit different because my initial hemorrhage was explicitly triggered by a heavy lift, which is why I am so focused on the Valsalva maneuver and occupational safety.

I completely understand the exhaustion of multiple procedures. I am currently going through my own staged embolizations as well. It sounds like your interventional radiology team is doing the right thing by taking it step-by-step and using modern materials (coils, plugs, and glue) to tackle it safely.

Good luck with your next procedure! Stay strong, and please feel free to keep me updated on your progress. We are in this together!

Best, Adriano

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Hi again!

Sorry for the double message, but I just thought of something else I was really curious about regarding your treatment.

Since your team is using coils and plugs, did they target the venous side (like the Dominant Outflow Vein or through a direct external puncture into the vein) right from your very first embolization?

My first surgery in 2022 only blocked the arterial feeders. I recently learned from medical literature that this is often contraindicated because it causes the AVM to grow larger (which is exactly what happened to me). I read that the current modern approach is to hold off on the arteries and attack the venous outflow first.

Did your doctors ever mention this specific venous vs. arterial strategy when they planned your very first procedure? Just curious to compare notes!

Thanks again!

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Hi Tom,

Thank you for the detailed reply! I really appreciate you letting me use your name as a reference for Dr. Rosen. Having a direct recommendation for such a top expert is incredibly reassuring.

Your explanation about the arterial approach makes perfect sense. It sounds like your body just kept fighting back and recruiting new arteries over the years, which is exactly why my 2022 arterial surgery failed and the AVM grew back larger. I’m so glad Dr. Rosen finally got you to zero pain and completely asymptomatic after 15 surgeries!

Right now, my team here in Italy is trying a mixed approach (hitting the venous outflow with coils and the core with Onyx glue) to hopefully stop the AVM from recruiting new feeders like it did in the past.

Thanks again for your guidance, the US healthcare tips, and for showing me there is light at the end of the tunnel. Have a great week!

Best, Adriano

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If this information can be linked to online, it would be great to link to it.

Watching the conversations of patients with an AVM outside the brain, it seems to me that most struggle to get the AVM obliterated. So understanding any approach that seems to close them off better is really helpful. My own personal theory is that in the brain there’s very little movement: nothing is busy flexing every time you take a step or move a hand etc, whereas outside the cranium, there’s a lot of opportunity to flex, bump, etc. But it is just my theory! There’s nothing to it! But I do feel that people with an AVM outside the brain have a much harder, much more ongoing fight so anything that indicates ways to reduce or remove that fight would be great.

Welcome on board!

Richard

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Hi Richard,

First of all, your theory about tissue movement, gravity, and muscles constantly flexing around peripheral AVMs makes complete sense to me. It is a brilliant way to look at it and really helps explain why these AVMs are so stubborn and prone to recruiting new blood vessels compared to brain AVMs!

Regarding the medical literature, I have actually been putting a massive amount of effort over the last few days into researching the most up-to-date medical papers on this exact topic. I am very happy to share a very recent and crucial systematic review from February 2026 by Dr. Hanno Hoppe’s team (Bern, Switzerland) concerning the DOV (Dominant Outflow Vein) approach. [Embolization therapy for pelvic arteriovenous malformations: a systematic review | CVIR Endovascular | Springer Nature Link]

There is one specific passage in the review:

“While a diagnostic pelvic arteriogram is advised prior to DOV embolization, transarterial AVM embolization is generally not recommended since this approach typically does not facilitate enduring AVM obstruction because new feeding vessels develop and may necessitate multiple embolization treatments for clinical success.”

I definitely do not want to cause any panic on the forum, and I absolutely don’t want to take this quote out of context—it’s always best to read the entire paper, even though systematic reviews are usually narrative specifically to spread knowledge clearly. Also, I don’t know for sure if this means that the endless arterial procedures many of us went through were simply “old school” rather than outright wrong, since every AVM is unique and medicine evolves.

However, honestly, reading that passage makes me profoundly sad. Back in 2022, I went to a highly respected top specialist here in Italy, and he went straight for the arterial approach without ever adequately warning me about this high risk of recurrence and neovascularization. It’s a tough pill to swallow, and it makes me wonder if this is exactly why so many of us get stuck in a loop of endless surgeries.

I am sharing this here in the thread in hopes it helps someone else looking for answers. If there is a specific resource library or pinned section on the forum where we collect medical papers, just let me know and I’d be happy to upload the link and summary there as well.

Thanks again for your support!

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It looks like a brand new paper, published only in February, so it may well be the first time that this has been concluded. So don’t be perturbed by sharing it: it represents a development in understanding, perhaps, and gives us hope really.

Transvenous approaches to an AVM bring higher risk to the operation, I assume, as there’s an increased risk of rupturing a vein compared to an artery when doing endovascular operations. So it would be important for it to be beneficial before one routinely takes this approach.

It’s really good to see this being published.

Thank you.

Richard

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Hello, welcome.

Your story sounds very familiar and I’m glad you reached out…

I’m a 41 year old male, software engineer, family guy, with a large high flow pelvic AVM (14×9 cm + aneurysm 6cm). After years (15+) of living with chronic pain in lower back area, I finally diagnosed it in 2022 via MRI.

I’m fully functional person with no disabilites of any kind. Constant pain, sometimes severe, and pelvic pressure are part of me at this point but it’s manageable. I’ve been doing quite good in a life so far, in terms of physical capabilities. I was never super active person but in last 6-7 months I started light lifting and running actively. Two weeks ago I ran my first Half Marathon.:1st_place_medal:Ppl call it middle age crisis as well, not just AVM existential crisis. :slightly_smiling_face:

I also got very mixed advice from doctors, so many different opinions, both sides of spectrum, from touching to no touching avm. From no limits, live normal life just avoid extreme stuff, to very strict restrictions, no running, no lifting, HR bellow 100. I’m still indecisive about my next steps…

But I definitely choose to have controlled moderate trainings and to be active as much as I can. I just feel so much better when I’m in that mindset. It lifts my spirit big time. Definitely best way to fight anxiety and avm demons.

Limits wise, in the gym I’m doing short 45-50min sessions, core + weights, max RPE 6/7 (60-70% effort), cardio wise I run zone 2 once or twice a week, with HR not above 130-135.

I completely avoid valsalva and max effort, heavy lifting and explosive movements. Controlled breathing is my main focus.

That’s just my perspective and my experience, hopefully I helped you at least a bit…

Cheers, Aleks… :clinking_beer_mugs:

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Hi Aleks,

Thanks so much for reaching out! It’s a huge relief to connect with someone dealing with similar AVM and contradictory medical advice.

I am currently training exactly like you—controlling my breathing and strictly avoiding the Valsalva maneuver. Right now I weigh around 100 kg, but my goal is to drop down to my ideal weight of 85 kg before I even think about subjecting my body to the stress of running again.

It’s really reassuring to hear your approach is working well to keep things stable.

Best,

Adriano