Pelvic AVM & Pelvic Congestion Syndrome

Is there anybody in the group with a similar pelvic AVM? I was diagnosed with pelvic AVM (my left internal iliac artery drains into my left internal iliac vein) [size 7.5cmx5cmx5cm] that causes Pelvic Congestion Syndrome, i.e. varicose veins, down the base of my vagina and bladder down to the urethra. My symptoms are bladder pain, urgency, frequency and urethral burning, but I also have IBS and hemorrhoids that bleed regularly.

My doctor says I am the first case he saw and AVMs (especially without any history of pelvic trauma) is very rare and the problem might not be easily treatable. I’d be my IR’s first AVM patient here in the UK. He’s a specialist in pelvic vein embolisation. I have a few questions:

Were you successful in getting treatment? What treatment did you have?
Can you recommend specialists in pelvic AVMs in the UK? I’m in London.

@Nathalie I noticed you seem to be in a similar situation. Would love to hear your experience or suggestions for specialists in the UK.

@admins Is there a way to add a pic? I wanted to post an MRI image of my arteries and avm?

Thanks!

You can upload a picture in the post using the little in-tray and up-arrow icon, bottom right of the edit window.

But I would recommend you delete any personal data from the images before uploading: strike out your name or date of birth, hospital number etc as we are searchable on Google.

I see Dr Adair specialist radiologist and Professor Bown at the Glenfield in Leicester, they have done injections but it keeps growing so they will be doing an operation where they bypass the femoral and saphenous artery and vein and cut out the AVM that’s attached to the artery and will rebuild the artery walls using other veins and material
They have never done the procedure before as they have never seen an AVM in this area. It might be worth requesting a referral to the vascular team or have them liaise with each other to plan treatment for you moving forwards. My AVM is in my groin and causes pain atm I am on morphine and amitriptyline hopefully the operation is successful

2 Likes

Next time you come to Glenfield, let me know. It’s walking distance from my house. (I mean, a good walk but quite possible for those of us without a groin AVM)

And only if you fancy a cup of tea or something!

Hello P. Even more rare is a male pelvic avm. I have a 10x3 cm internal iliac.
Have had two embolizations but symptoms still getting worse. Severe varicose veins and now severe testicular vascular issues.
I’m sorry to hear about your condition and know what it’s like to go through the horrible symptoms that most doctors don’t know what it is or how to treat it. Keep looking and you will find someone to help you. After 6 specialists finally found one who would even touch mine. But in my case probably more dangerous to do surgery than leave it. Everyone is different and Hope you can find some relief.
Here if you need to vent also.
Eddie.

1 Like

The image only contains the age (46) thankfully

1 Like

That would be lovely. Thank you
There definitely is not enough support from our NHS for people with AVMs, you are diagnosed and then sent on your way, there is no dedicated nurse, physio, emotional support, no leaflets and we are expected to carry on as normal I am still fighting to get my blue badge! Thankfully for those who know we have this site, maybe we should reach out to every vascular department in the UK and request they pass this sites details onto AVM patients and GP’s.

1 Like

Hi P

I have looked at your image, would you mind if I show it to my surgeons on Tuesday for their feedback?

Mel

Hi Patica

I have been scanning this site and found something posted by a chap back in 2018 I think I have copied the details below

STS Foam Sclerotherapy - #6 by Gibsons

I’d say it’s a bit better with neurosurgery: my neurointerventional radiologist had a team of specialist nurses who I could call up to ask questions. Interestingly, my consultant seemed entirely comfortable with the presence of a brain AVM (or, specifically in my case a dural arteriovenous fistula) despite its rarity. I do think some of the trouble you are having is that pelvic AVMs seem that bit more rare (or, quite likely, very much more rarely diagnosed). There are often different troubles with rare diseases – clearly a lack of local support groups, hence an online community being much more helpful – or misdiagnosis – or ignorance of rarer conditions – or assuming that a trouble can’t be such-and-such because (in the words of my neurosurgeon) to have X would be “vanishingly rare”, when rare conditions must happen to some of us :man_facepalming:t2:

Anyway, it is fabulous that you found us. I hope we can continue to help you along the way and any promotion you’d like to do of the rare disease communities of Ben’s Friends (of which this is the best obvs) would be great!

Very best wishes,

Richard

Hi, I have a pelvic AVM and am male.

My AVM was found when it ‘tore’ inside. That is the only way I can explain it. It went from minor to major. Bleeding in my bladder since it incorporated part of the bladder wall. Truth be told, things progressed so fast that I did not really have much time to think about things. When the tore happened, I went from an active adult to someone who could barely walk up a flight of steps. That is how much volume going from artery to vein. (Going to get my records soon.)

My Dr, had not seen and AVM this big but he did read up on things and talked to others. I think he went to a conference within the 3 months between discovery and first surgery.

From reading other people’s account and their time frames and some of the issues that they have, I think my Dr found a good solution. I’ve not had any complications, (Almost 2 years now) and the procedures where not bad. Basically 4 surgeries. 1 to take pictures 7 hours. Embolized 1 major artery. The next 2 surgeries (7 hour each) was to place 10+ Meters of Ruby Coil during each surgery. Last surgery was to follow up with the smaller connections, which in my case, seemed to be healing on their own since the major pressure was released.

I say this because I think the Ruby Coils as one of the major reasons I have had so much luck. They are longer and built to be placed in larger areas. (Also their HQ is close to the hospital and he may have been able to talk with them directly.)

This is a link to the coils. You could see if your doctor can contact them. They have offices in Germany and Italy, did not see one for England.

You are younger than I and if they can get it under control, hopefully your body will be able to respond like mine and get things under control. In any case, it becomes a yearly checkup to see how things change.

Good luck.

1 Like

Not at all, that would be great. I have a full series of images from my MRI if they want to take a further look. I was first diagnosed with Pelvic Congestion Syndrome PCS (varicose veins, primarily internal left iliac vein ). Dr Brookes, who is a specialist in AVMs, ordered this additional MRI at the Royal Free Hospital in London, but somehow completely ignored or missed it on the MRI and the MRI report and instead scheduled me for vein embolization. I had another appointment with Dr Beckett in Bournemouth for a second opinion and that’s when he told me my PCS is caused by the AVM and that needs treating first. I’m not sure if I should go back to Dr Brookes who missed it or stick with Dr Beckett, who has been amazing so far, but it would be his first AVM.

Who are your doctors? Are you in the UK by any chance? I’m also on a FB group for AVMs and I met 2 men from the US with pelvic AVMs. One was in a wheelchair. They both seem to have had good results with embolisation and onyx, I think. I’ll let my dr know about these coils.

It took me 5 years to get diagnosed because my symptoms started (or rather worsened dramatically) after a kidney stone. Not sure how the kidney stone impacted the AVM, but it likely enlarged it and caused pelvic congestion, i.e. varicose veins along the base of the vagina and bladder down to the urethra. My worst symptom has been urethral burning and bladder pain heaviness plus constant urgency/frequency. Because of this and the kidney stone, I spent years seeing urologists and gynecologists, diagnosed with interstitial cystitis, embedded infection, treated with antibiotics which messed up my gut. Thankfully, the pain meds I’m on for the bladder are helping. Weirdly, my urethral burning and bladder pain have food triggers. I have no clue how this relates to the AVM but the body is a complex machinery.

I hope you get some relief. You are the first person I meet who was also, like me, diagnosed with varicose veins. Did the docs say if the AVM caused the varicose veins?

Thanks, Mels! The discussion of genetic mutations is really interesting. I wonder if these can be tested. Mine is likely congenital because I did not have much pelvic trauma other than that caused by the kidney stone.

My doctor is Dr Brahler at Kaiser Oakland. I’m actually in San Francisco bay area of California USA.

Oh and yeah, my discovery was via the bladder. Blood in urine and a lot of pain urinating. They gave me antibiotics and when they did not work, They ordered a CT Scan. First one found the mass. Then they ordered a second one with a contrast dye in my blood. The Dr said, with the dye, your arteries should be white and your veins black (maybe the reverse) but in your case both are the same uniform grey. That’s not good.

After the surgeries. My bladder lesions have cleared up. The urologist is happy with what he sees and I’ve not had any more issues with urinating and frequency of having to go.

1 Like

Hi. Most docs don’t know, but we know our bodies and can tell when something is wrong. I also get this strange feeling of water running down my legs when I stand. Not always but often. Kinda freaks me out but learned to live with it. I’m 59 and know what my diagnosis is. You need to keep fighting and fond a doctor who can help you. I have shortness of breath, extremely fatigued, a fib, abdominal pain. And others. What we have is very rare and not a lot of data. I’ve been looking for 11 years.

1 Like

Looking at my MRI report, I noticed there is a question mark next to the AVM
finding and I do plan to get another appointment with my first radiologist, who seemed to ignore it. Now I wonder if he maybe disagreed that this is an AVM.

Here’s the report from the Royal Free Hospital in London

MPELVC
Clinical Indication: pelvic varices and ? high flow AVM left side for 4D trak

Findings:
There is a left-sided pelvic vascular malformation present. This appears high-flow as it fills simultaneously with branches of the left internal iliac artery on the 4-D track series. It drains into the proximal left internal iliac vein. The serpentine abnormality measures approximately 75 x 50 x 48 mm. The abnormality extends along the left pelvic sidewall and extends inferiorly as far as the left side of the urethra and vagina.

Impression:

High flow vascular malformation left hemi pelvis

The query might be whether high-flow. Other vascular malformations are possible, though all VMs are welcome here! Always worth asking about.

Indeed. Dr Beckett, however, said that based on the imaging, it’s a complex AVM with many arteries feeding into veins, but wants to do the angiogram to explore the exact architecture. He did say it does not look like a simple one with one artery and vein or just veins. The mystery is why the first specialist I saw, who has treated AVMs, did not bring it up at all. He either missed it or does not agree it;s AVM. I have an appointment with him in early Nov just to ask him this question.

1 Like