Polycythemia Vera & Menstruation

[Moonflowers_]

I have recently been diagnosed with Polycythemia Vera and have been getting phlebotomy’s every two weeks since December to reduce my Hematocrit. I used to have a copper iud and would have very heavy periods. Could my heavy blood loss have been masking my PV? I then got a hormonal iud which has made my natural blood loss become almost nonexistent. After I got the hormonal iud is when my headaches became much more frequent, averaging 4-5 times a week. After my first phlebotomy I now only very rarely get headaches. I’ve read that the average amount of blood loss during menstruation is between 30-60ml and much higher with a copper iud. One unit of blood removed for phlebotomy is 450ml. So in one year you could loose more then 1 unit of blood through menstruation. Wouldn’t it be best to remove my hormonal iud so I can loose some blood that way too?

Thank you

[hunter5582]

I have never heard that theory of mitigating erythrocytosis before, but it would make some sense. Heavy menstruation can induce iron deficiency. I would think that it is a sub-optimal way to achieve your PV treatment goal. Phlebotomies are more measured and predictable.

Controlling the microvascular issues (e.g. headaches) related to PV are a huge benefit to effective treatment. We often have far more trouble with these symptoms than we do with the primary risk of thrombosis. Glad to hear your treatment is working.

All the best.

[user2021a]

I have PV and also a copper IUD plus was on warfarin because of having had clots and also had fibroids. My periods got to a point where I was getting very anaemic and were a nightmare because I would bleed so heavily. I ended up having a hysterectomy. Before this point I never had venesections. Since then I have been having them every 4 weeks. So I would say yes definitely has an impact. Up to you about coil removal - I know I was limited in choice of contraception as had blood clots so nothing hormonal allowed. If the venesections are ok for you, personally I'd prefer that - you can control when you get them unlike menstruation.

[Lena70]

I'm not sure how helpful this will be, but I was having debilitating heavy periods for several years. Apparently, MPNs can cause this. I've taken Provera for a year now. It has worked to normalize my periods. Unfortunately, my hematocrit has gone from 38 to 43.9. It does appear that my heavy periods were masking my PV. I see both docs next month to decide how to proceed. Everything is so complicated. I try not to get frustrated. Sometimes I fail.