I was diagnosed with a uterine AVM via ultrasound 2 weeks ago, awaiting MRI to figure out the size, exact location and treatment plan. Having now digested this and read the scary but scarce information, I am really grateful to have found this group.
I had extremely heavy bleeding and large clots, being classified as menorrhagia and resulting in low haemoglobin and iron levels. I am also having daily gushes of heavy bleeding between periods - no bleeding but then 5-30 mins of bright red blood and large clots. This is confusing my Drs, has anyone else experienced these gushes?
I am also experiencing some discomfort (strange pain) that comes and goes and spreads to the rest of my stomach at its peak.
As all my bleeding is stopping itself and I’m ‘clinically’ stable, I have been given tranexamic acid which has been working so far (but doesn’t stop the constant worry of the bleeding starting again) and the MRI has not been scheduled urgently (6 week wait).
It would be great to hear the treatment routes that others took, the progression of symptoms and any advice you may have for me to manage my AVM. I’m 22 and want to prepare myself and my family for what the future could hold.
Looking forward to getting to know others in a similar position, thank you for reading
Glad you found this site. First off, I’m male so I am going to describe a similar experience but can no where be the same.
So my AVM was discovered because I strained. Meaning, my AVM has fused into my bladder. One day when I strained too hard, I raised my blood pressure and muscles around the AVM squeezed it a bit too much and the blood vessels in my bladder broke.
Dr originally thought I just had a urinary infection but after 10 days on antibiotics and no change, he figured there was something else going on. (Well I was telling him that I not only had blood in my urine but I was passing blood clots and some nice sized ones at that.) That day they did a CATscan (since I still had blood in my urine), found the mass and in short order I was on my way to surgery. (The AVM was causing other issues with my heart.)
Anyway, the similarity with your case is that my AVM was affecting blood vessels in an adjacent organ which was bleeding. Before any of the surgeries, my Dr said basically no lifting, no straining, nothing that would stress the abdomen. I did take it easy, prune juice became my friend and any sort of exertion to my abs was stopped. And the bleeding in my bladder stopped and healed.
Now, after the surgeries. My AVM was embolized with mostly coils, I still try to avoid any undue stress and straining and I’ve been clear, no blood, for 3 years. It is now something that I just have to be conscience of.
Which brings up the last point. Listen to your body. Remember what you did/do/doing and see if you notice changes. Your body will talk to you. And don’t hesitate to talk here. Don’t go it alone. (If you read some of my other posts, you will find I did not find this site until after I went through everything. But then again, I do that type of things in almost everything I do in life.
Take care and thanks for sharing.
Ceri, was there any trauma - birth, miscarriage, accident - that could have caused this uterine AVM? If not, it is likely congenital. Trauma caused avms ate easier to treat bec they are simpler networks of arteries and veins. The congenital ones are more complex and harder to block.
Welcome to the group; it’s been a great source of information!
I was diagnosed with a uterine AVM after my daughter was born and had a post partum hemorrhage 3 weeks after she was born. The doctors classified it as a congenital AVM. Eventually I had an embolization of my right uterine artery that has healed or fixed the AVM. I have had multiple scans (CT, MRI, ultrasounds and a veinous CT scan). All scans have shown the AVM to be resolved at this point but there is no guarantee it wouldn’t come back if I were to get pregnant again.
I hope this helps and that you are able to find a solution with your doctors.