Hi There
I hope everyone is well.
I am newly diagnosed with uterine AVM.
I had a TOP (medical) in November 23, bled for a long time after however things then settled and my bleeding pattern returned reasonably to normal by Feb 24.
By start of March things changed and I began having episodes not of normal menstrual bleeding - I would be “dry” but then experience sudden gushes of blood for a couple of minutes that would saturate pads, underwear, trousers and then bleed over onto the floor. Once the gush was over, I would have no bleeding for a few days and then I would have another episode.
I was admitted to hospital after a few of these episodes as my haemoglobin and ferritin levels became suddenly very low.
MRI showed an “extensive” UAVM with active bleeding in the uterine cavity as well as with active bleeding in the pelvic cul de sac.
Ive been placed on norethisterone tablets.
The Drs where I live have said theyve never encountered a UAVM before but that the research shows many will have spontaneous resolution, this is what they are hoping for me.
I am still having episodes of bleeding and passing clots through the northisterone, although the blood loss is far less significant than when I was not medicated however the Drs dont think I should be bleeding at all. Im also experiencing episodes of severe pain in my pelvic area, lower abdomen, back and am occasionally getting shooting pains down my legs.
Any interventional treatment is not offered where I live so if the AVM does not resolve on it’s own I will have to have treatment in the UK, however I am looking into private options for a 2nd opinion.
So I guess, hello!
I would love to hear from anyone if they have had spontaneous resolution of UAVM as Im hoping this will be the case for me.
Please reach out.
I had this in 2020.
I went through hell.
I live in Newcastle NSW.
They had never dealt with this before here either.
I almost died had 2 blood transfusions. They even tried to do wired things in the vessels in my uterus.
Nothing worked. Ended up with an emergency hysterectomy and fought for my life.
Worst thing ever.
Jodi
You’ve posted in exactly the right place. I’ve set up the forum so that all of the other Pelvic and Uterine people will see your first post: hopefully a number of them will share their own experience.
From the various posts I’ve read over the years (do have a read in the category specific to this area) I remember one person saying they’ve had a spontaneous resolution of an AVM – not in the pelvic area as far as I remember. I think it is most unlikely.
AVMs are rare. Pelvic and Uterine AVMs are even rarer, so far as I can tell by the numbers here. So there is no way that docs on the Isle of Man will have dealt with this before. I would definitely get a referral to the UK.
It’s really good to have you join us. I do hope we can help you a little along the way.
I was diagnosed with an UAVM in 2016 after on/off haemorrhaging following a second trimester miscarriage in 2016 (caused by the UAVM). It was the worst 2 months of my life and to be honest I’m still dealing with the trauma of it all.
The only way the docs could get rid of my UAVM was to do an embolisation where they essentially blocked off blood supply to it.
My OB/GYN in Melbourne Australia had never seen one in his 25 year career and it took two specialists women’s ultrasound docs to diagnose it. They are not common and for the person going through it, it’s a very scary feeling as you don’t know what’s causing it and if it will ever get better. I would get a referral to a specialist radiologist and get an embolisation.
After everything and posting here, I had a massive life threatening bleed resulting in a 12 day hospital admission, 2 blood transfusions, air ambulance to Liverpool in the UK for treatment, embolisation to the uterine artery and right ovarian artery and a further surgical procedure to remove RPOC which have gone unnoticed from the healthcare providers in IOM for 7 months. (Diagnosed with ROPC within 5 hours of being in Liverpool, yet missed on 1x abdomnial ultrasound, 2xYVS ultrasound and 1x MRI in IOM - scary!!!)
The team here believes that the ROPC has been infected for months and caused irritatation and damage to the myometrium so much which is what caused the vascularities.
I should be getting discharged tomorrow to fly home.
The scariest and hardest experience of my lifetime, that’s for sure.
Hoping now to put this all behind me and get my life back, but I feel that the mental wellbeing aspects may be harder to get back in order. I am usually a very positive and independent woman but this whole experience has left me very shaken.
That does sound like a very scary couple of weeks! However, it sounds good that they found the RPOC and you’re in a much better position than you were.
Well done for dealing with it all! Big virtual hug from me!
Very best wishes for getting back into a much more usual happy space,