Extreme periods

Dear all, i am new to the forum. i am in my mid 40s and was diagnosed with ET 6 years ago. the only symptom i have (apart from the fatigue) is very heavy periods. i could have a small procedure to help control and possible stop the periods (endometrial ablation) - but i have got it into my head that this extreme monthly bleeding is helping to control my platelets. my count is normally 12 - 1400, after several months of very heavy bleeding i am currently at 1000 (i am not taking meds) - does anyone have any experience of a change in platelet count after their periods have stopped (either naturally or after surgery)? i would welcome your thoughts and experience.

5 Replies

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  • hi, i was dx with ET 2011 and started bleeding heavily which i found really hard to cope with, my iron levels were really low and i was anemic and my hemoglobin dropped to below 10, it was suggested i had a coil fitted which i did and the bleeding stopped altogether which was great,. that was 3 years ago now i was 49yr im not sure if it helped with lowering my platelets but i couldn't carry on like that.

  • Hi Stephanie - I am 57 years old have had ET diagnosed since 37 years old and went through exactly the same condition that you describe in my late 40s .

    I was also recommended the same procedure but decided against it and instead asked my GP to put me on the mini-pill. I took that medication for a couple of years and then tried taking myself off, The bleeding had stopped altogether. Thankfully, I have not had a period since. My bleeding was extremely heavy with large clots and was pretty much continuous for at least a year. You can imagine I was so relieved when it stopped! I have been on HU and blood pressure tablets for about 10 years. Taking this medication, my count has remained around 300/400 and my blood pressure is 75 over 119. It was the best move I ever made! Good luck!

    Amanda x

  • Hi yes, I agree with you that one's periods affect one's blood counts. I found out I had PV partly because my periods nearly stopped - turned out to be because my blood was so thick ! I discussed with my haem who said very definitely that having periods reduced my blood counts. Sounds absolutely logical - the same as having a venesection!

  • thank you all for your replies - really useful - i am very pleased that i am not on my own with struggling with this symptom. the specialist nurse i spoke with told me to focus on sorting out the symptom rather than worrying about the platelets - which is great advice. i hadn't thought of the coil or mini-pill - so i will definitely look into that. i think the relationship with ET, bleeding and platelets is less straight forward than the relationship with PV, bleeding and platelets - as you say jane13 the relationship is much more logical with PV.

    thanks again

  • Hi, I'm 46 with PV & have the same problem. Bleeding heavily reduces your red cells (haematocrit) but has the opposite effect on platelets, which is why it's a balancing act when you have venesection - good for the red cells but bad for platelets. I've always had heavy periods but since I've been on hydroxycarbamide (2 years) they've been horrendous, maybe just coincidence. My haematocrit has never been below 45 for years but dropped to 36 after a particularly bad period. Thankfully the hydroxy kept my platelets stable. As if we don't have enough to put up with! xxx

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