My history: I have Von Willebrand disease. If you haven't heard of it (which I'm sure much of you have) it's a bleeding disorder where I lack the VW clotting factor, leaving my blood to be thin, and I bleed and bruise easily. I have had heavy periods since I started menstruating (at 13) and have been on birth control since 14. I've only used the pill, tried a few different brands, have used the regular 21 actice days, the 24 active days, and also seasonique. None of these really helped my bleeding, and I also have a large fear of vomiting, so any nausea I felt from certain pills made me switch again. I am currently on Aviane, which I take in 3 cycle packs, so I get my period every 9 weeks.
My issue: My gyno, when I first was prescribed Aviane, told me that we would start with 2 months, then 3, then keep going until I am on continuous birth control. I need this because of my bleeding disorder and an extremely low iron count because of blood loss. I saw her until I got up to 3 cycle packs, and then she stopped making appointments with me. I just got the "ok" for 4 packs from a nurse at the clinic i go to, but I extended another month this past pack. My iron count was extremely low, and I had to go through iron infusion treatments over 5 weeks, and I don't want to lose the iron I just got back to almost normal levels.
Should I: Trust my instinct, and extend my birth control to 6 packs at a time? This would be about 18 weeks without a period, almost like Seasonique with an extra month. I am tolerating the pills well and have no breakthrough bleeding. The other recommendation from my gyno's nurse last time was an IUD. About a year ago, the actual dr told me my uterus was too small for an IUD and she'd be scared of any bleeding it could cause inside of me, because of my disorder.
Basically, I can't stand my period. My life revolves around it when I get it, and I just want to know:
Would you go to 6 cycle packs because that was the original plan and the dr just isnt following up? Or should I do the IUD and still have some periods, potentially bleeding more than I do now since I only have it every 9 weeks, and risk any complications?
ALSO with the IUD, I have painful sex to begin with, and am currently trying different creams to help the vaginal walls be more flexible, so I'm not ready for more pain with an IUD during sex. I know many people don't have an issue, but I've also read stories about male partners being poked by the strings and women feeling like the iud is being shoved into them.