Intestinal AVM - anyone else?

Hi there,

I’ve just joined your community to find out more about Gastric AVMs. I understand that most topics seem to be based on brain or spinal AVMs but wondered if there are others out there with an AVM in their small intestine? The Gastric chat has no messages! I guess that tells me how uncommon they are.

My trouble is that I have recurrent GI bleeding, leaving me anything from mildly anaemic to collapsing and requiring fluid resuscitation. Over the last three years I have had three main bleeding episodes, all at the same time of year. The bleeding lasts for around a month on and off and I have had countless endoscopies, CT scans, MRI, and capsule endoscopy. All to no avail - consultant team suspect I have an AVM in my small intestine but they can’t find it at all, therefore they can’t treat it with cauterisation or clamping. The medical team at my local hospital in Scotland are great but I wonder if there are specialists out there in the U.K. that perhaps have more experience? My current treatment is just repeated blood transfusions (thanking my lucky stars for all the blood donors out there) and long stints in hospital trying to agree the next step.

If you have any experience of a similar AVM it would be really reassuring to have someone else to talk to about it as we seem to be a rare breed! Thanks for reading.

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Em,

Welcome to AVM Survivors! You’re right… gastric AVMs do seem to be among the more rare (or the more rarely diagnosed). When I set about creating the groups a few years ago, I don’t remember finding many references to gastric AVMs and I don’t remember seeing many speak up recently either.

However, there is a magnifying glass at the top of the page, you can search there for relevant terms. The one caveat I would give you about that is that we moved platforms in summer 2016 and some of the folk on the older platform never really got used to the new way things work, so faded rather into the background. So if you find a topic dated 2015 or earlier, it will be a stretch if the correspondents are still active here. But given your rarity, give it a go.

On the other hand, I think the troubles you face are likely to be similar to those with a @PelvicAndUterine AVM. These seem to me to be very difficult to deal with (I’m afraid) and the troubles and worries associated with them will be similar to your concerns, I think. And we have a decent continent of Pelvic or Uterine members, and it seems to me a bit of a new influx recently.

Or, just tell us how you’re getting on: what you’ve managed to do, what worries you, what you can’t do, whatever.

It’s great you found us. If we can help in any way, that’s what we’re here to try to do.

Very best wishes,

Richard

Hi Richard,

Thanks for your message! Yes, I’ve managed to search a few terms and find a few posts from people with Gastric AVMs but all are very old posts. You never know, someone else might come along and see my message.

I suppose I am looking for some sort of reassurance that I can be fixed or cured, that I can put all of these episodes behind me. But reading through many posts I realise how lucky I am as AVMs in the brain can be so much more frightening and serious. There’s so little information out there and I’ve heard anecdotal tales of people who never find their gastro bleeds and it plagues their life. Looking for a bit of light and hope.

I’m glad I’ve found this site, thank you for the warm welcome.

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Honestly, I think an AVM anywhere can be just as frightening. The effects in different parts of the body obviously vary but sometimes you can do something about them and all too often it isn’t possible to intervene. I’ve had an intervention, so I do feel rather lucky and I also made to to 50 before mine gave me any trouble, so I considered that really lucky. I didn’t worry about my health for 50 years. That’s a definite blessing.

For you, I hope you keep looking, as and when it gives you trouble and one day find it, fix it and breathe out!

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Hi Em245, I’m a recent member too. I have a pelvic AVM although not gastric. It took me 5 years to get it diagnosed because my symptoms were gradual and tolerable until 5 years ago when, for some reason, a kidney stone made it acute. Because my main symptoms are bladder pain and urethral burning, I followed a lot of dead ends with urologists and urogynes. Now the Interventional Radiologist I saw for pelvic congestion syndrome said the MRI report shows a pelvic avm. I would be hist first AVM patient so I am also on the lookout for pelvic AVM specialists in the UK. (I’m in London). I have gastric problems/IBS and I suspect they too might be partially caused by the AVM, but nothing as bad as you. I did develop hemorhoids in my mid 30s out of nowhere and now I know they are caused by the AVM and the pelvic congestion it created. They bleed quite badly occasionally but not enough to need transfusion. I feel good that I finally have an explanation but increasingly disheartened by how rare and difficult to treat pelvic AVM seem to be.

Hope you find some answers and that people’s experiences here can help.

I’m also part of a FB group, Arteriovenous Malformation (AVM) Support, and somebody just posted there about gastric AVMs. They might be in the US though.

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Hi,

Welcome to the group! I think gastric AVMs are really difficult to find and treat. I have had AVMs in my uterus and leg. The one in the uterus took about 13 years to diagnose. They kept saying it was a gastric issue. I went through all the endoscopies and they couldn’t figure it out. They would say it was IBS or they’d make something up. One doctor put me on a gluten free, dairy free diet. That was so difficult to follow. I was in my late teens, early 20s dealing with all this and trying to balance school. I always thought it was so so unfair that I couldn’t eat the free pizza at various university events! I finally stopped that diet because the symptoms persisted and they couldn’t find any sign of celiac disease on any of my scopes. I even had the capsule endoscopy done. They claimed that the bleeding could have been from internal hemorrhoids. They even had the nerve to ask me if I was being sexually abused because it was so rare for a 20 year old girl to have those kinds of internal hemorrhoids. It was insane. After many surgeries for my large AVM in my leg that were unsuccessful, I finally found Dr. Rosen at the Lenox Hill Hospital in Manhattan. He successfully embolized the AVM in my leg and the ones in my uterus. I did not discuss the possibility of gastric AVMs with him because my doctors had previously told me that just because I had one AVM in my leg, didn’t mean I would have others in my body. They thought that there was no way I could have an AVM in my uterus or intestines or anywhere else. They were wrong! I still have some of the gastric issues, but it hasn’t been bad enough to justify going back to Dr. Rosen. I might end up having to do that in the future. I’m in my 30s now and I just sort of deal with it. I had a colonoscopy done last year to rule out cancer because of the pain, but they didn’t find anything except those internal hemorrhoids. Sometimes I wonder if the hemorrhoids they are seeing are actually AVMs but they don’t know it because they are so rare. I always have a significant amount of bleeding after endoscopies, so I hate going.

I really wonder if the gastric AVMs are more common, but they’re harder to find. I hope that the recent advances in MRI and MRA technology will help, but the new machines are so expensive, they aren’t being used often. They’re probably more dangerous as well since they use much stronger magnets.

I hope you’re able to find some AVM specialists that can help! If you can afford to travel, Dr. Rosen is the best.

Catherine

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Oh, wow! I didn’t know that… I have thought that for a long time, but didn’t know that they could be caused by pelvic congestion… I guess I’ll have to research this more! Thank you so much for sharing!!!

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Thanks pitica and Bunny for your replies. It seems that AVMs can be very hard to find and treat when appearing in unusual places! I’m sorry that you’ve both had so many investigations.
Each time I have a bleed I get a CT scan and usually an endoscopy but it seems to be an intermittent bleed that stops and starts. It is never bleeding when under investigation apparently!
I think I am starting to realise that this could go on for a long time. It has been two years since my first episode. I live in Scotland so can’t imagine travelling to US for medical care but I have taken out private health care here which doesn’t kick in until next January. I’m not sure they will have any more luck though!
Thanks for suggesting the Facebook group too - I’ll have a look.

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Hi pitica

I don’t know if you have been referred anywhere, but I have been sent to the Royal Free team in London for my AVM (admittedly in my foot), and they have been fantastic - very kind and patient. Not sure if you can ask to be referred to them (or if they deal with your specific type of AVM), but I can say that they are brilliant.

Best of luck, and hope you find a specialist who can help soon!

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Hi Em245

I hope things are starting to look up a bit. I know it is kinda far, but the Royal Free vascular team are very very lovely - although not sure if they specialise in gastric AVM (mine is in my foot). Best of luck and keeping my fingers crossed you find a specialist to help soon!

Hi @Writerchick were you by any chance under the care of Jocelyn Brookes or his team at the Royal Free Hospital? I am actually their patient, being initially referred to them for extensive pelvic congestion, which is fairly common by comparison to AVM, identified on a pelvic MRI with contrast. They ordered another more specialised MRI and the report mentioned the AVM for the first time. However, dr Brookes went ahead and scheduled me for pelvic vein embolisation. I went to another pelvic congestion specialist for a second opinion and he told me I actually have and AVM based on the imaging and will need an angiogram and avm embolisation. Because it is the AVM causing the pelvic congestion, embolising the veins would have been a useless procedure.

So now I am so confused why Dr Brookes, who is the avm specialist, did not address that. I scheduled an appt with him to ask and it’s coming up this Thursday. I’d much rather treat in London bec this is where I live, but worried bec they seem to have actually missed the avm. Or maybe he disagrees it’s an avm. I doubt this bec the most recent transvaginal pelvic ultrasound noted very high flow in my veins which is not typical of pelvic congestion. The ultrasound consultant, who is specialist in pelvic congestion said she has never seen such extensive pelvic congestion without trauma (pregnancy and birth, abortion, miscarriage, accident, etc), but the AVM would explain this.

I was just diagnosed with two non-bleeding AVMs. Do you have any gastrointestinal symptoms? Mine were found incidentally during a capsule endoscopy to rule out Crohn’s.

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Hi Writerchick, thanks for your message. I spoke to my consultant last week. She agreed to refer me to a gastro specialist in Glasgow Royal infirmary, who will likely agree to give me a deep balloon endoscopy under general anaesthetic at my next bleeding episode. I’ll see how this goes but will also look into the hospital in London too. Good to know that there are some AVM specialists out there that I can suggest to my docs to consult with.

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Hi Cporosus1, sorry to hear you have two AVMs but it’s great that they’ve been found and can then be monitored.
My consultants suspect I have an AVM deep in my small intestine that they can’t find. I don’t have any other gastro side effects other than a loss of blood when the AVM ruptures. Sometimes it’s a large loss but usually it’s a small bleed. I wouldn’t expect that your AVMs would be causing your gastro symptoms if they are not bleeding but hopefully you can get more info soon.

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Guys,

You are the first bunch of gastrointestinal AVM people we’ve had in here for a while. I’m convinced there are a few more but since you are starting to knit together, I thought it might be helpful if I created a GastroIntestinal Group.

If you join this group, any posts in the Types of AVM / Gastro category will automatically notify you, so you’ll be able to stay in touch / know when one of the other GI members is posting a new topic.

General information for everyone:

  • You can join multiple groups if you have AVMs in more than one location. Join your main interest group first and it puts a subtitle next to your name (like mine says “Moderator” at the moment)
  • Each of the non-brain AVM groups has a Types of AVM category. Posting in the relevant category gives a notification to members of the relevant group. I have to say this is a new feature that I have only just realised exists, so if you’re a longer standing member of a group, you’ll only recently started getting notifications.

I’ll move some conversations into the gastrointestinal category so others can find them more easily.

I would also note that I think our PelvicAndUterine group will overlap a little with the Gastrointestinal group. Let me know if we should merge you together some day.

I hope when I try to make improvements to help people get support that it has the right effect. If I ever do something that rubs you the wrong way, let me know (but do so gently! I need it to be gentle!)

Very best wishes,

Richard

Hi pitica

Yes I am with Mr Brookes team (I have Mr Lin (or Lim not sure) as my consultant and Mr Brookes is my radiologist I think - Mr Lin is a very nice consultant).

I am surprised they missed that - when I went in they seemed pretty cautious with my foot. What they scheduled me for was an angiogram and embolisation and I was told that if they confirmed it was an AVM they would treat then and there, and if not they would just stop at the angiogram - maybe that is what they want to do in your case as well (they told me they have pretty long wait lists to get people in so they try to book a surgery slot as if they were doing everything, and then if they cant they at least have the slot to proceed if they are able). Definitely worth checking with them (they are super chill - every time I have an appointment I go in with a long list of questions which they are happy to go through).

Best of luck on Thursday!

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I had my appointment with the team. Another consultant called, but he consulted with Dr Brookes and another doctor. They put me on hold and took about 10 minutes to look at the imaging. They say they are 80% certain this is not an AVM (and I just have pelvic congestion), but there is something in appearance that raises a question that it might be an AVM. Apparently this MRI did not follow their usual sequencing so they want to do another MRI to make sure whether this is or not an AVM. They said I’ll probably get a spot in 2022 for the MRI. I have angiogram scheduled in two weeks with the other team that diagnosed AVM, but I’ll cancel it for now to see what this team decides.

Hi Writerchick

I’m also a patient at the Royal Free under Jocelyn Brookes and have found them very supportive and knowledgeable. I think they are becoming a major centre for AVMs in the UK. My AVM is in my left arm.

Take care of yourself.

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