I was diagnosed with a uterine AVM last week and wondered if anyone on this forum was able to offer me any information, as I have been given very little by the health professionals.
I am a 32 year old mum of one (my daughter is 19 months old). She was delivered by csection in April 17.
I had a missed miscarriage on 1st Oct 18 followed by a D&C on 3rd Oct. 4 weeks later I was still getting positive pregnancy tests, so I returned to the early pregnancy unit. They scanned me and told me I had retained products, and needed to have the D&C operation again. I had the repeat operation on 9th Nov. As I was coming round from the general anaesthetic, the surgeon informed me that the operation had gone well, but she had found an AVM in my uterus. She told me it might have been there since birth, or caused by my csection or previous D&C, but it wasn’t anything too concerning and would just go on my medical records. I was later discharged with no further information or follow up appointment.
I had never even heard of an AVM before this, so
of course when I got home I googled uterine AVM and have been extremely worried ever since. Everything I read online suggests they are very rare and can cause problems with heavy bleeding, future fertility and future pregnancies. I have not yet been able to contact my surgeon, so am still very in the dark about what my AVM might mean for the future.
I am trying to tell myself that it can’t be anything too major, as surely the surgeon would not have discharged me with no follow up or information. I have had minimal bleeding since the D&C and stopped bleeding althogether yesterday.
If anyone has been through something similar, I would love to hear your story. My main questions are:
- could it prevent me getting pregnant in the future?
- could it cause problems with carrying a baby during pregnancy?
- should I be receiving follow up care (e.g. further scans or appointments).
Welcome! It is a pretty rare thing but I’ve been nudging people into our @PelvicAndUterine group for maybe a year by now, so remarkably, we do have nearly 30 people in a similar situation. Not everyone is “active” on the site but I hope a few of the ladies will be able to join in the conversation.
You’re right that they can lead to heavy bleeding and may need something doing before you consider getting pregnant again. I guess it will depend on the size and location as to what issues or concerns it brings. It doesn’t feel right to me to simply go on your medical record unless it is really quite small.
I think you need a vascular specialist but I’ll let the ladies tell you which specialisms they’ve seen and who “gets it” and who doesn’t.
I would always encourage people not to worry or get into a panic. That you have an AVM doesn’t mean it’s going to take some kind of revenge on you, certainly not straight away. So, unless you’ve got excessive bleeding going on, it’s best to just stay calm. AVMs are higher risk with high blood pressure, so much the best thing to stay chilled.
Talk to your GP about your concern in the first place.
I hope some of the ladies will also chip in.
Very best wishes,
Hi Cam, welcome. I have a large pelvic AVM that was diagnosed about 20 years ago. Before you lose more sleep, I would encourage you to follow up with your primary physician and allow them to review your results and if needed he/she will refer you to an Interventional Radiologist. I am so sorry for your loss and hope all goes well with you. Please update us.
I was diagnosed in May when I wouldn’t stop bleeding from a d&c for a mmm I had on March 30th (5 months after a c-section). Blood seemed to be on/off during the day during the last ten days or so before hemorrhaging I was strangely bleeding only from 6-7pm until bed time and then nothing until next evening,this until a morning I was at the post office and I felt blood and cloths gushing out of me. I freezed. Couldn’t even walk because blood was all the way down to my feet (sorry TMI). At the emergency room I was put on anti-hemorrhaging IV drips and let to rot (with a blood transfusion in between) in a bed until I called another hospital where they promptly performed an embolisation the very next day I arrived there. They gave me two options: progesterone therapy or embolisation ( I chose the one with particles not the one with coils) but then the doctor said that since I intend to get pregnant fairly quick again it was better to do an embolisation. At the two week follow up they said avm was gone and blood flow to the ovaries was mantiened. My period has been light (not soaking a full pad per day) but regular ever since,and my ovulation seems to be on track to,despite I didn’t get pregnant again unfortunately and still ttc (but this could be due to not timing things well since my hubby works long hours these days) or at least this is what I hope
I didn’t have another follow up since June,not every doctor is prepared on this particular disease and I’d like to be seen by same chief ob gyn and chief Interventional radiologist who carried my embolisation but with insurance first availability is in June 2019 and I’d have to pay out of my pocket lots of money (but they would macigally have availability the next day,while ‘nother story).
In your case I think you need to remain calm, watch for bleeding patterns and book an appointment with an ob/gyn. If you can do a quick search on the ones in your area who know about avms. If they will deem it necessary they will refer you to an Interventional Radiologist. The avm can be seen and confirmed just via a color doppler ultrasound but they will sometimes require a MRI (I did one with contrast and it came back clear strange enough) and/ or a CT scan.
As I said before please don’t panic,they can cure the avms even with hormones. Just please pay attention to bleeding and If you notice anything out of the norm / big clots seek immediate medical attention.
Thank you all so much for taking the time to respond. I really appreciate it.
Richard, your words are really reassuring - thank you. I agree that I need answers to lots of questions I have before I can plan the next steps. From what I’ve read, the size and complexity of the AVM has a huge impact on what the risks and treatment options are, so I definitely need more information than “you have one”.
Debbie, I agree I need to follow up with a specialist who knows about AVMs. I am in London and have so far been treated through the NHS, but they are always so over stretched, so the wait can be long. I am considering going private to get some answers sooner.
LaReina, thank you so much for sharing your story. It sounds like your symptoms were similar to mine to begin with and so useful to know what potential options are if I do begin to bleed heavily. It is reasurring to hear that your embolism was successful and your periods have returned to a normal cycle. I wish you luck on your TTC journey and hope you get good news soon.
Welcome to the little group of people who know about this rare medical condition. Rather than re-type everything about my experience, could I share this link with you, or you can google Amanda Buykx Uterine AVM and it will come up
My advice, is find a good sonologist (ultrasound specialist) who can check for high velocity blood flow, and great interventional radiologist, and then if you are to get pregnant, stick with a specialist sonologist and a good Obstetrician who is willing to learn something new, and follow you up closely. You’ll note in my story I had placenta accreta and Previa, so that’s something to watch closely for as well
Best of luck, and feel free to contact me further if needed
I was recently diagnosed with uterine AVM myself and it is very scary. I have been on birth control (hormone therapy) for a month now and it’s been an up and down battle. The beat thing I can tell you is stay in contact with your doctors and dont ever think that you shouldn’t go to the ER. I’ve been 4 times since my miscarriage carriage in August and you have to do what’s beat for your body and mind. Stay strong. We are all here for you.