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Von Willebrand Disease (VWD) - Online Support Group

VWD and Birth Control Options

Hi,

I was diagnosed with Type 1 VWD about a year ago. My gynecologist casually mentioned that I could have it,prompting me to get tested and find out that I actually do have it. My hematologist says that I am low in iron and iron saturation but that I am not anemic and that I could consider birth control if I wanted to. My gynecologist claims that the only BC I can take is an IUD called Skyla or the Depo shot. She says the IUD is the most effective but it can increase bleeding for up to 6 months to a year,along with some nasty side effects. Depo also has some nasty side effects. I explained this to my hematologist and he said it was my decision but the fact that the IUD can increase bleeding as well as the other effects was a matter of if I want to take that risk of bleeding more and my iron count and saturation dropping. I can’t take estrogen due to migraines,so I am considering the progestin only pill. However,my gyn is convinced that I would not be compliant and an IUD would fix this. I am compliant with treatment for my medical issues. Have any women with VWD taken progestin only pills and do they seem effective?

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Hi,

I found out I had VWD because I was on a progesterone only BC. I was told the estrogen in the BC I had been using before “treated”, if you will, my type I. If you cannot take any estrogen and need/want BC I would suggest trying nexplanon, but I did bleed very often and lightly. I think this was due to having VWD because my cycle has always been very short and consistent otherwise. I also did suffer from some abnormal acne. I’m not sure how your suggested IUD would fair, but that was my experience. If I hadn’t bleed so often the benefits would have out weighted the acne. I have since been put onto Tri-sprintec which has graduated estrogen and love it. No more headaches and acne is very very managable.

Hi!

I was diagnosed with type 1 about 6 months ago. Prior to that I tried both depo and an IUD, and recommend neither. Depo shot caused MAJOR, rapid weight gain (70+ pounds) and other undesirable side effects. I had an IUD for about 1 year and bled well over the majority of the days. Not light bleeding either, but I’ve always had horrendous and irregular periods. I ended up having to have a D&C done to alleviate the bleeding and start over “fresh” for lack of a better term. I also have PCOS so that doesn’t help with the weight gain/loss, but I recommend ortho micronor… it is what I currently take, low dose progestin only pill (there is a higher dose pill if you prefer called norethindrone). It’s not as effective as combination hormone birth controls because it doesn’t always prevent ovulation, but it has helped me a ton! Hope this helps.

Hi there,
I have Type 2B, so I may not react the same as you would, but i did not do so well on progesterone only pills. I took them because I too got chronic migraines and could not take estrogen pills and also took them while nursing my two children. They cause unpredictable bleeding/periods. Your GYN should confirm that. So much so I ended up in the hospital once for blood loss. Everyone is different though, so that may not happen to you. I’ve been on an IUD for a year and a half. The IUD was recommended by multiple doctors, including my Hemotologist. The first few weeks after inserting, I bled - but not heavily. Since then I have not had a period. I still get migraines though - but I got them on the progesterone pill as well - so it turned our they weren’t triggered by that type of hormone. I do Botox therapy for migraines since most preventive migraine pills gave me crazy side effects.

Gynecologist refuses to give me birth control pills of any kind, because in her words " you’re not compliant with your treatment and you can’t take estrogen birth control pills so why bother with the other non estrogen pills". I am compliant with my treatment but because I bucked the iud the first time it was mentioned - I wanted to ask my hematologist and pcp about it and see what they said before making any decisions, she has it that I am not compliant. I am compliant with my treatment but I have a long complicated medical history and I don’t make snap medical decisions unless it’s an absolute emergency and I have no choice. I’m going to try the Skyla iud with the stipulations that per my hematologist, if there is a serious increase in bleeding more than what I already bleed, any side effects that I don’t like (mood changes,persistent bleeding, etc) , or if my counts drop, I have it pulled. Maybe I am a wimp, but an IUD was never intended to be my first /only choice for birth control and I feel that I’m not being respected/heard when I provided my gyn with proof that I am compliant and could I try pills rather than getting a lecture every time of " You have a disorder, live with it,there’s things that you can and cannot do, sooner you deal with it the better. "

On another note, has anyone ever had misoprostol for IUD insertion? Gynecologist mentioned that it can cause cramps and bleeding, but didn’t say why I needed it(I’m a virgin, if that makes any difference ) when I am required to be on my cycle and bleeding less than a tbsp for the insertion. Sorry if this is all TMI, but I need advice/suggestions from other VWD people.