Does anyone have an AVM in their right groin?

Just read your other post about feeling like a burden on your family. It may feel isolating when you can’t share your symptoms with loved ones I fully understand your feeling of being a burden communication is so important, you will find that your family just don’t know how to understand what your going through or your pain cause it’s not something many people experience. I’m not sure about the buzzing sensation you have, was this after treatment because it maybe a nerve thing when I used to get sclero on my right groin Avm my surgeon always said you may have tissue damage which can cause pain. I like the saying the ‘squeaky cog gets the oil’ keep calling your drs and push for you to be seen by pain management team. I had to try a few different tablets to find the right one.
Please know you are not alone, we are here to support you and share experiences, and try communicate how you are feeling to your loved ones you are all on this journey together.
Always here when you need me
Mel

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I’m not sure how likely a link from extremity AVM to HHT is. It seems to me more common with pulmonary, heart and maybe brain than extremity AVMs. And it may not be the only condition but it’s the only one I recall the name of.

Other conversations about genetic links, which could be helpful…

Thank you @Mels ! :heart:

I will definitely chase the local GP tomorrow about my referral to the pain clinic! It is very true about the squeaky cog (just got to keep making noise at them :smiley: )

That is my worry that I might have nerve damage (they did an EEG I think to check, and while they cleared me on nerve damage in the main nerve, they said they can’t see it at a smaller level (like microscopic?) so who knows.

It means so much to have found everyone and be free to speak about these issues where I am understood.

Hi

My name is Nathalie and I have a pelvic AVM.

I can’t believe I have missed all those posts, I must have messed up my notifications !

I am in UK too, BIrmingham way. I have been referred to Queen Elizabeth for my treatment but it has been two year since diagnosis and one year since the embolisation was decided and nothing done.

I am lucky when it comes to pain (although I have spent all day in bed with it today) because mine is intermittent and cyclical. Naproxen, Codeine or Tramadol. But frankly, when it gets bad I don’t think Codeine and Tramadol do much.

They might not know much about it in Leicester but they seem much more proactive than my doctors here. I hope your procedure is successful.

Take care

Nathalie

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By the way, I was referred by my vascular surgeon to a geneticist at Birmingham’s Women hospital to check if I had a genetic condition linked to AVMs. I have two children and I was concerned about passing it on. They did some tests but they didn’t find anything significant although the geneticist say that there might be an answer there but very little is still known about genes.

I can’t take this anymore it’s really painful nothing helps and my surgeon seems dismissive of my pain and my GP just gave me a bottle full of morphine….I’m 35 I don’t want to be knocked out every day missing my kid growing up. If anyone has a cure for helping the intense burning feeling please please share with me. In the last week it’s gone from disrupting daily activities to halting any activity, pain went from on and off to constant stand up and it stings and burns throbs and feels like the veins explode inside of me! I want my life back :sleepy:

Hi Mels, I’m new to the group and also in the UK. Took me 5 years to get my pelvic AVM identified. My left internal iliac arteries are draining straight into my left illiac vein, creating a large AVM of 7.5cmx5x5.

Are you feeling any better? Is the pain from the procedure or from the AVM? I’m on a cocktail of meds for my pelvic pain (mainly bladder, urethral burning, urgency/frequency, and IBS, bloating, bleeding hemorrhoids).

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