Hey everyone, hope everyone is doing well? bit of background(sorry if long!).im 34, suffer health anxiety pretty bad in the past but in recovery after therapy. I have one child who I had to have Elective C section with and did not recover from that op well as my wound opened 3 days pp due to a blood clot and had to be packed for 4 months before closing (was hell)
Had a miscarriage two months ago at 7 weeks and was given misoprostol to help pass it. 1 week later massive bleeding with heavy clots and was told after scan some products still remained and sent me home. For last 2 months bleeding has not eased and occasionally soaking through trousers etc and still passing massive clots, checked by gynae consultant this week finally and advised I have no more retained products but I have AVM in uterus wall that is causing bleeding. She explained she wasn’t an expert in this and was referring for urgent scan in UK with specialist to look into treatment options and I was sent on my way with meds to help stop bleeding something acid?
I am so upset at this news but so glad I found this group at the same time… I dont know when my scan will be but what I have been reading on Dr.Google has not helped my health anxiety at all. That this condition can be serious ?!
I have questions and whilst this doc i have was good she couldnt help me!
What caused this? (quite healthy, non smoker, occasional wine drinker)
If I want to conceive again…is this possible?
whilst waiting for treatment can I still live a relatively normal life? Can I exercise, have sex, do i have to eat certain foods, can I have the odd glass of wine?
this is so new to me so im sorry its long please bare with me…
Hi Cherry and welcome to our group. I see you are in the @PelvicAndUterine group so I imagine some of the group can pass along some experiences. I see a lot of question for some pretty specialized medical people, which most of us certainly aren’t. Common advice will be to keep track of your questions so when the opportunity presents you have them, find a Dr you trust and a second opinion is never a bad idea! A lot of things AVM are not well known in the medical field as we are a relatively rare lot. Again, Welcome, John.
Hi Cherry. Sorry to hear about your health anxiety and the AVM. They can be scary! I was diagnosed with a uterine AVM after having a D&c for a wanted pregnancy but Bub had a structural problem and wouldn’t have survived. It came on about 6 weeks after the d&c so I assumed it was just a really bad prolonged period. But ended up being diagnosed after losing a enough blood to warrant two transfusions. I spent a lot of time researching and finding this group etc to look into treatment options but like you had tranexemic acid (?) and blood transfusions. I was looking into a doctor that might do an embolisation but found a lovely gynaecologist in Sydney whose name came up amongst my research and she basically just did a wait and see approach. I had surgery to stop the bleeding (same time as transfusion) and apparently the dr at the hospital just cauterised the site. And that seemed to do the trick! Fell pregnant about 6 months later with my now 2.5 year old daughter and absolutely no issues.
From what I read, i was one of the ones whose AVM resolved on its own. I still think the cauterisation must have helped as the bleeding stopped after that. There did seem to be some resolution after embolisation also. I think they are done by interventional radiologists. Never had to get to that but I have read on this site and others that women can go on to have healthy pregnancies etc after embolisation too.
It sounds like your best bet at this stage is to find a doc you trust with at least a little experience in this and seeing what happens. It may self-resolve.
Wishing you the best. I know the bleeding and google-doctoring AVMs can be really scary but I can tel you it is all but forgotten once it settles. And it will.
X
Hello everyone! Thanks so much for your kind and positive words! I’ve been taught the tools for My healthy anxiety through last year therapy but they unfortunately went out the window the other day when I found out! I’m in the UK so unfortunately don’t get a choice when it comes to a good doctor we are so busy too at the moment with all the Covid crap ! I think I just feared that they sent me on my way and I kept thinking what if I have a bleed out etc at home but they most of not been that concerned as they would have kept me in the hospital! I feel I do want another child in the future, and it seems good to know you can have a healthy pregnancy! I will keep this post updated and I will certainly look into that book thanks again xxxx
Hi Cherry101. I’m afraid I can only pass on what I’ve been told and details of my own experience. I have a brain AVM so its a bit different. I found out when I was in my mid 20s although I first got a ‘symptom’ when I was 14. I went on to have 2 children (now 16 and 12) and although both were born my C Section it was fine. My first consultant advised me to carry on with life as normal so that’s what I’ve done. I live, work, drive, eat and drink (moderately) etc the same as anyone else. I also exercise although I did read once you should avoid weights as they put too much strain on an AVM, I understand that learning you have an AVM is a big shock. But you can get through this. Stay strong and best of luck to you. Lulu x
Firstly welcome to the family and sorry to hear about your experience. As a parent and husband who has watched my wife miscarry twice I really do feel for you as I know it is tough… I’m not sure about AVM’s in that area, however confident there should be members here that can offer some insight to your questions… It is always best to speak with a medical expert in this area also as everybody is different and what may apply to you may not apply to someone else but I know when you are looking for answers a place like this is always great to fall back on… wish you all the best and hope everything works out for you… God bless!
(was hell)