Periods & Secondary Polycythemia

[Elcee253]

Firstly, sorry for the overshare here! I'm in my mid 20s with a diagnosis of secondary polycythemia. My periods have always been heavy but have recently started getting worse. The blood is very often thick and clotty, which makes me wonder if the polycythemia plays a role. Has anyone else experienced this?

Thanks x

[Dazakella2010]

Hi....

I was diagnosed with ET JAK2 + last April and I too have noticed that when on my period that my flow is really clotty.

[Elcee253 in reply to Dazakella2010]

Thanks the reply, and sorry you are experiencing the same

[Ebot]

MPNs - not entirely surprisingly - can effect periods. Definitely worth mentioning to your haem / doc. There may be other causes for the increased heavy bleeding which are worth checking out. And if it’s bothering you there are meds which might help relieve symptoms. Also check that you’re not becoming anaemic.

[Elcee253 in reply to Ebot]

Hi, thanks for the reply. I am trying tranexanemic acid because it is bothering me. My ferritin is consistently low now, around 10-12 usually and has gone down to 5 before. The haem I spoke to wasn't bothered as my haemoglobin is still a bit high, but it doesn't help that I end up with a different one each appt

[Ebot in reply to Elcee253]

It’s a really tough balancing act - elevated haematocrit / platelets vs anaemia - and periods just add into the unhelpful mix! Tranexanemic acid is the go to med. But if you’re not getting much relief then maybe a wider gynaey check out would be worth it. Hope you get some relief soon.

[Elcee253 in reply to Ebot]

They really do make it complicated! Thank you for the advice 🙂

[hunter5582]

Erythrocytosis can make your blood more viscous and prone to clotting. Iron deficiency can elevate your platelet levels for a compounding effect. The combination can make you more prone to clotting. You did not mention what your polycythemia is secondary to, but perhaps that could play a role as well. Don't worry about oversharing - that is what we are all here for. It is all about helping each other out. Hope you get some answers and relief soon.

[Elcee253 in reply to hunter5582]

Thanks Hunter. I didn't know about that effect of iron definiciency so I'll look into that

They haven't managed to work out the cause but I'm negative for the mutation markers so diagnosed secondary. My EPO levels do jump around, and I have an extra kidney so it may well be linked to that

[hunter5582 in reply to Elcee253]

I believe that would make you a triple-negative MPN rather than a secondary polycythemia. 5% of people with PV do not have the JAK2 mutation. There are others on the forum who know a lot more about than I do. I have a JAK2+ PV, so that is what I have focused the most on learning about. Here is one article on this topic. There are plenty more. ncbi.nlm.nih.gov/pmc/articl... .

I would also wonder about the role of the extra kidney or the underlying genetics of that. Sounds like an answer that will need to come from several knowledgeable specialists. I do hope you have found a true MPN-Specialist as most regular hematologist do not have the expertise you need with the rarity of your situation. If not here is a list mpnforum.com/list-hem./ .

I hope you get answers and relief ASAP. All the best to you.

[Elcee253 in reply to hunter5582]

Thanks for the link I'll take a look. The diagnosis they put on my notes does seem to change arbitrarily so definitely worth looking into

[Melanie66]

Hello ...

Yes my periods were the same ... although I was diagnosed with ET only a few years ago , I believe I had it years before as anything to do with blood meant real suffering for me .... because ET is brought about by our bone marrow producing to many platelets our blood is too sticky to flow naturally.... hence tiredness also the many other symptoms .. I always have a hot water bottle ( really helps )and rest ...

Lainie 😘

[Elcee253 in reply to Melanie66]

I love hot water bottles to. Thanks Lainie, I hope yours improve now you have been diagnosed

[LRH1977]

I was also experiencing dreadful periods when I first got diagnosed with ET 8 years ago. My GP recommended a Mirena coil (which I was told was the safest form of contraceptive for me having a MPN too). Since then, my periods have been really light - some women's stop all together - and I experience little premenstrual pain. It's been a good solution for me, obviously depends on your preferences etc, just thought I'd share!

All best

Lucy

[Elcee253 in reply to LRH1977]

Thanks for the suggestion Lucy. Glad you're have improved so much

[Mamab83]

I have ET and have awful periods. 7 days and very heavy with clots. My hemo told me that’s very common with ET. Makes me wonder if I have had it my whole life bc my periods have always been like that

[Elcee253 in reply to Mamab83]

Mine have always been fairly bad too, but seem even worse recently. Mine didn't really comment when I brought it up so useful to know it's not just me so thanks for the reply 🙂

[JaK2ET]

The subject of heavy periods for MPNers was also raised recently by another member of the forum ("Madam Cholet" I think). It seems that quite a few of us have experienced these well before our MPN diagnosis. Over 25 years ago I went to see my new GP for the first time because I was concerned about somewhat irregular periods (they had often tended to be heavy too). On that or another occasion the doctor asked "Do you pass clots?" but when I said "Yes" she would not explain why she had asked that question ...

I wonder if heavy/clotty periods (without other obvious explanation) might be an indicator of risk for subsequently developing an MPN ... ?

I hope you are now getting the help you need. Good luck!