At the same time I was diagnosed with ITP, I also started having terrible periods (gushing). I was diagnosed with uterine fibroids and large cyst. My gyn would not do surgery because of low platelets, finally after I told him I could not take this anymore. He agreed to perform myomectomy with permission from my hematologist. After surgery, he put me on birth control to help with lighter periods. It works for the first 2 months, but here we go again. 2 days for gushing and cramps. I am so frustrated with this because every time I bleed heavy my iron levels drop even more and I am already anemic.
I am 49 and I am tired of dealing with this on top of the ITP. At this point I'm ready for a hysterectomy. Anyone have any suggestions???
Sorry to rant, just feeling frustrated today. Thanks.
Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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If it were me I think I'd be seriously considering parting company with my uterus.
I had this same problem around your age. They put me on birth control as well, but I had a lot of break through bleeding, which was extremely heavy when my platelets were low. I think it's totally your low platelets. I think you might be getting a little bleeding from either the cyst or the fibroids. Was everything removed during the myomectomy? Or could something have come back?
My gynocologist didn't offer me a hysterectomy, but did offer me a uterine ablation (I think) where they use a laser to destroy the lining of the uterus, so that's another option. I said no because I figured I'd go into menopause soon and it would all stop, but that was a mistake. My periods didn't stop until I was 57. Then when I finally went through menopause, my platelets improved so that they're usually over 30,000 and occasionally even normal, so it's not an issue anymore even though I still have some spotting still. I don't know if the improvement in the platelets was because of menopause or whether it was a coincidence.
I don't know if this was any help, but I just wanted to share my experience and commiserate with you.
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