Hey everyone,
So this is mainly for women and maybe some men that know about this. I have an AVM in my left calf, before it was treated and I knew what it was I noticed the pain would worsen the week of my period. I know hormones can affect the growth of AVMs. Ironically I went off of birth control about 5 months before the symptoms progressed to the point of going to the ER and being diagnosed. I don’t know if stopping the birth control had anything to do with lessening the symptoms. I’ve always had issues with my cycle and ovarian cysts, and I was always on birth control. I was pregnant last year and obviously worried how that might affect the growth of the AVM. The past couple months the pain has gotten worse, initially it seemed just nerve related but now it’s starting to ramp up around my cycle again. It gets pretty intense to be honest. My OB put me on Mylan, which is the generic for Yaz. I was supposed to start it last month but was sort of worried about it causing issues with the AVM. Does anyone have personal experience with this? Am I going crazy to think that my cycle makes the pain worse and feel like it’s growing again? Anyone have issues with birth control, or not being on birth control?
Hi Jamie, I’ve never been on birth control so I can’t speak to whether that would help or hurt, though I believe one doctor told me that birth control could potentially stabilize my hormones and slow down some of the growth in my AVM.
Mainly, I wanted to tell you that you are definitely not crazy to think that your AVM grows when you have your period. When I have my period my AVM is definitely larger and the pulse is a lot stronger. This all varies month-to-month like most of my symptoms, but it certainly coincides with when I’m
menstruating. After my period, the swelling in my AVM will lessen, but I do think it is those few days each month that are causing it to slowly grow over time. The increased pressure during my period likely causes the vein to stretch. FWIW, mine is on the back of my head.
Thank you for your reply! It’s nice to know I’m not imagining things. I told my fiancé, who tries to be supportive as he can, that I can now tell when my periods coming because of my AVM pain getting worse, and he’s like “whatever you say babe”. That makes sense what your doctor said though, that birth control might help to lessen the symptoms of it stops menstruation. Which would somewhat explain why my AVM progressed when it did. When I went to the hospital, they kept asking if there was trauma to the area recently, which there wasn’t and the symptoms gradually got worse over a couple months, and I mentioned that I stopped taking contraceptives right before the symptoms started. I’m really starting to think one definitely has to do with the other.
How was your AVM diagnosed? Were you symptomatic?
Hi Jamie, I definitely notice my avm (in my left arm) worsening during my cycle. I experienced rapid growth and change when I went through puberty and both of my pregnancies. What I have learnt is only to have birth control with progesterone rather than combined. We are at more risk of clotting issues which for me increases pain. Not all blood clots are the thrombosis ones they talk about, the smaller ones may be less life threatening but still very painful. For my pregnancies I went on blood thinners and actually I have continued for pain reasons and it helps. I used to have clexane daily injections but I now take Apxiaban in tablet form. I was advised for blood thinners with a heparin are the best ones but worth checking for you.
You are definitely not imagining it. Hormones definitely do affect it, or at least have for me.
I’m pretty sure the @PelvicAndUterine ladies report similar things. I’m sure you’re not going crazy. At least, this is not proof that you’re going crazy! 
My AVM is in my arm. I was on a birth control pill. My arm swelled, got hot, was very painful & I couldn’t even have clothes touch it, it was so bad. The birth control pill was causing clotting issues.
Morning!
I have a pelvic avm, particularly around my womb. Period pains are particularly intense. I’ve had paramedics taking over an hour with gaz and air, paracetamol IV and extra doses of morphine (I had already taken some, got my own prescribed) to control it. I don’t know if it exactly grows during periods but it definitely gets swollen and inflamed. Currently, since my last embolisation. I can control the pain with codeine and diazepam so happy days! I was also told that hormones make things worse hence why I couldn’t have birth control. I was under the impression that, whilst I took birth control, it hid the avm and its symptoms and possibly made it grow. However, I am not a doctor and you should ask your consultant. Pain wise my cocktail is Gabapentin daily for neurological pain, paracetamol/codeine for analgesics as abd when needed, and diazepam as a muscle relaxant, especially with menstrual cramps. Again, that is as needed, only usually whilst I have my periods. There are other drugs targeting / doing the same thing, it depends what you react well too. Good luck!!
I also notice periodic increase in pain depending on menstrual cycle. I have read somewhere that the AVM grows during ovulation. Something about an increase of some growth hormone?
In the early stages of my AVM I only had symtoms from it during menstruation though.
Hi Jamie,
I was diagonsed with spinal AVM 13 years ago and have been on birth control ever since. I can definitely tell when my cycle is near as the symptoms becomes worse. The hormonal change is definitely somehow linked to the heightened symptoms. I also experience bladder weakness during this time.
Thanks for your post, it definitely does resure that one is not imagining things 
Thank you for your response, sorry to hear about your experience. I brought that up with my OB, she was aware of my Avm but I don’t think she read further than that it was treated a couple years ago, and I think assumed it was no longer a problem because when I mentioned regrowth she commented “I thought it was treated?” She did some research and said that the depo shot might be the best way to go, I had it last year after I had my baby and didn’t have any side effects.
This page in general has leveled out my sanity, I constantly think I’m imagining things but the. Read that someone went through the same thing and I am relieved I am not crazy.
Birth control worsened mine for sure. And the pain improved significantly when I stopped. It gets worse with menopause too unfortunately.