Polycythemia and pregnancy

[Sleepypandachu]

Hello! Both my pregnancies I had severe subchorionic hemorrhaging. I was put on bed rest. I’ve always had heavy and clotty periods. I pass golf ball sized clots all the time. Could this all be due to PV?

Thank you!

[Hidden]

Hi. What treatment are you on for PV? I had very heavy and clotty periods and was told it was due to the warfarin I was on. It was more likely it was caused by the huge fibroids and adenomyosis I had as it was only something that developed over the last five years. Had a hysterectomy 3 months ago and relieved of all those problems- used to play havoc with PV because of constant anaemia and subsequent iron infusions. Feel so much better now.

[Sleepypandachu in reply to Hidden]

Thank you so much for the reply! I’m happy to hear you’re feeling so much better! I’m currently in the process of getting testing done to see if I have PV. I was wondering if I have had it and that’s what caused my bleeding during pregnancy. This is so new to me!

[hunter5582]

The short answer is possibly yes to the PV or the meds you take being involved. You would have to review the side effects of the meds for the answer. Regarding the PV, while the primary risk is typically thrombosis, sometimes you can be at risk for hemorrhage if you experience thrombocytosis. It may seem counterintuitive, but elevated platelet levels can actually put you at more risk for hemorrhage than thrombosis. It depends on how your unique presentation of PV manifests. Pregnancy can change what is "normal" for your body and how your PV presents.

We can't really say much more than what is possible. You are asking a really important question that would best be resolved by consulting with a MPN Specialist. most docs (obstetricians/hematologists/etc) do not have the KSAs to properly address your needs at this point. If you do not already have a MPN Specialist on your care team, here is a list mpnforum.com/list-hem./ .

All the best to you.

[Sleepypandachu in reply to hunter5582]

Thank you for the information! It’s super helpful. I’m not sure if what I have is PV. The doctor is investigating it. It made me wonder if it could be the reason to my bleeding during pregnancy though...

[hunter5582 in reply to Sleepypandachu]

You definitely want to get to the bottom of this. PV is a manageable condition providing you receive the proper care. Consultation with a MPN Specialist is very important. This is beyond the scope of expertise of most physicians, even hematologists.

Please let us know what you find out.

[Sleepypandachu in reply to hunter5582]

Thank you for the advice and support! I seem to have some of the symptoms. Extreme fatigue, itchiness (very uncomfortable), headaches, dizziness... but the fatigue is really unbearable. However, my CBC numbers are not that high. Sometimes it’s even in the normal range just on the high end. My EPO was within normal range. I’m just hoping to find answers... thank you again!!