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AVM Survivors Network

AVM on the uterus wall


#1

Hi, I’m after advice if anyone has any?? I’m 29, my 1st pregnancy had to be medically terminated at 12/13 weeks due do body stalk anomaly. After 2 attempts with Misfefristone which didn’t work I had a Surgical misscarrage management. I haemorrhage in theatre but they was happy with my recovery and got discharged. 2days later I went back with fever/temp and was 're admitted with sepsis. I had an ultrasound few days later which showed retained products so had another SMM-they said it went well. 4weeks later still in pain and no period yet I went back to my GP had another ultrasound which is showing suspected AVM on the wall of the uterus. I’m having an MIR with contrast fluid tomorrow and will get the results Friday. I haven’t had any bleeding since the 2nd D&C… I really want to be able to have a family… has anyone come across anything like this?? All I’m reading is women who have been bleeding/hemoraging, i havent had that… just discharge. All i keep hearing from doctors is that I’m unlucky and rare. Can any one help?? Thanks Jenni


#2

Jenni,

Welcome to the site! There are several ladies on here with similar AVMs to you, perhaps, with similar questions. I’m very pleased to see you find the pelvic & uterine category.

Please join the Group as well and I hope one of the members of the @PelvicAndUterine group can help answer your questions.

Very best wishes,

Richard


#3

Hi Jenni

I’m not sure, but I’m wondering it perhaps you have Ashermans Syndrome from the medical management, but I’m not sure as I cannot tell if you mean a D&C or pharmaceutical (misoprostol etc) management.

Ashermans is common after D&C in a recently pregnant uterus, but is actually also rare, like an AVM.

An MRI should show if it is an avm, but my cessation of periods came from my Ashermans, not my AVM.

This is a minefield for you, as both are rare, and in my experience, both poorly understood by the medical profession.

I’m not on the site much anymore (but Dick often cc’s me to these queries), as I eventually had a hysterectomy after my son was born, due to my Ashermans recurring all the time, but I’m happy to help you. You can email me privately at ■■■■■■■■■■■■■■■■■■■■■■■■ and we can discuss further if you’d like.

Amanda


#4

Amanda, Jenni,

The system blanks out email addresses automatically these days. To talk privately to each other, click on the other person’s icon and select “Message”. I think you can swap private details in a Message without it blanking out.

Very best wishes,

Richard


#5

Hi Amanda,

Thanks for getting back to me. I’ve been to see another doctor, and at the
moment they think the AVM is in the muscle of the uterus and I still have
retained products from pregnancy.
I’ll be undergoing surgery tomorrow, with both gynae and AVM intervention
radiologist. Hopefully everything can be left in tact so I can try and
start a family one day. I appreciate your advise and I’ll mention the
Ashermans to the doctor if a period still doesn’t come after this surgery
tomorrow as it will be my 3rd operation since Nov.

Thanks for your advice and help
Jenni x


#6

Hi,

Just a little update, I didn’t have an AVM in the end, we went and found a different Dr and hospital and got second opinions and it turned out to be retained product from pregnancy that had its own blood supply, and had got bigger since/grown in size from the last operation, it was embedded on the back wall of my uterus, because of its own blood supply it was looking like an AVM. I ended up having 4 operations all from the same pregnancy. I am now waiting for tests to be done to see if the operations have caused Ashermans.

thank you all for your advice and help.
Jenni