ET and periods/menstruation

[junebuggy]

Hi - this is a question for those of you who have monthly periods, (or were still menstruating when you were diagnosed).

I was diagnosed several months after going to see a doctor about spotting/dark clots up to a week before my regular period (in my late 30s)- I asked to be screened for cancer and a blood test turned up irregularly high platelet count. After my diagnosis and since going on aspirin, my periods seemed to settle down for a while but recently (I'm now 40) I have been getting a week of spotting again in the run up to my full-blown period.

I know most women are diagnosed after 60, but I was wondering how common this is for menstruating women? The only website I have seen that mentions this as a common symptom is Cancer research website. (Other sites mention heavy periods, which I've always had, but often link this to aspirin). Sometimes I worry it could be a symptom of another problem.

And i'm curious if anyone has found a way to better regulate their periods, because as i understand it MPN patients should not take hormonal pill/IUD because of clotting risk

Thanks

[Otterfield]

I was 39 when I was diagnosed with ET. I was on Anagrelide for a couple of years, then switched to Hydroxycarbamide. Another couple of years later my periods became irregular and more or less stopped. I assumed it was early menopause, but soon I began spotting. A gynaecologist did a D&C and found that I had endometrial hyperplasia (thickening of the womb lining). This needed treating as it can become cancerous. Blood tests showed that I wasn't yet menopausal but I had no more periods, which was great because I used to have horrific cramps. I have no idea whether my experience was anything to do with ET or just a coincidence.

[junebuggy in reply to Otterfield]

Thanks for your reply- hope everything is under control now!

[Otterfield in reply to junebuggy]

Oh very much under control now thank you. I'm now 61 and recovering from a stem cell transplant. I have to have regular BMBs and always laugh when I have to confirm that I am not pregnant! 😁

[moo196]

I'd be thinking peri menopausal symptoms perhaps 🙏

[Wilbert2018]

Hi

I’ve experienced similar - spotting for a while (sometimes even a week or more) before my period. But to be honest my periods have been a complete disaster zone since getting diagnosed and put on warfarin. It’s like Armageddon!

I’ve always had some clots and quite heavy periods, particularly in the couple of years before my ET diagnosis (presumably connected with the ET but I don’t know for sure). But since starting the warfarin the clots are huge and my periods are much heavier. It’s only been the last year or so that I’ve noticed the spotting. I’ve kind of put it down to a combo of ET, anticoagulation and cytoreduction, plus potentially getting into perimenopause. It sounds like we’re similar ages. I had a blood test a couple of months ago which showed I wasn’t producing any markers of perimenopause yet but I’ve also heard that it can be tricky to get a clear view from only one blood test for perimenopause markers.

So I’m not sure this gives any helpful hints for you - except to say I’m experiencing similar stuff. You have made me think perhaps I should discuss with the Dr to see whether other stuff is going on as Otterfield’s experience showed. But to be honest it just feels like one more thing to discuss with the Drs and I feel like I’m constantly dealing with Dr stuff and I’m a bit exhausted of it. My ET symptoms are quite burdensome and I have a number of complicating factors relating to thromboses I’ve had. I have heard like you that we wouldn’t be able to take pill because of clotting risk and I’ve been told in no uncertain terms I’m not allowed to take transamexic acid which some women use to help with heavy periods because of the clotting risk. So I guess I’ve put it down to ‘not urgent’ or just needing to manage it.

The only helpful hint I might have in terms of managing - and this is purely preference- but I’ve found period pants a lifesaver both for the spotting and for the heaviness of my periods. The range of absorbencies have really helped me and given me peace of mind. But I recognise period pants are not for everyone. And it’s not helping regulate my periods.

I do think there’s a real lack of info about MPNs and menstruation out there. I think it’s connected to the view that most people are diagnosed over 60 as you say. But while it’s still true most people are older when diagnosed, I read somewhere that one of the fastest growing groups to be diagnosed with ET is women under 40. So I do think it’s a gap that needs filling.

Hope you manage to get some answers.

[junebuggy in reply to Wilbert2018]

Thanks so much for your reply! I didn't know about perimenopause tests. And I agree women under 40 seems like a bit of a gap in a lot of the info! But forums likes this are a great support.

[Fjdjdjdjd]

I was diagnosed when I was 32 and it was from routine blood tests because my periods were all over the place. I’d have two in a month then nothing 60 date etc. I have found since I was diagnosed that I feel a lot worse when I’m on my period, in terms of tied, dizzy and im more pain, and I never had period issues prior to diagnosis just the odd cramp.

I went back in contraception after my diagnosis and they change me the mini pill (of which I’ve had to try many brands as I do now continue to spot and have incredibly irregular periods), but there are many possible reasons not related to ET I think.

[junebuggy in reply to Fjdjdjdjd]

Thanks so much for your reply! Thats good to know about the mini pill. I hope you manage to get symptoms more under control... I am definitely feeling a lot more tired around that time recently too

[KLCTJC]

My periods have been weird too. When I was younger they were kind of light but 7 days. Now I have clots on day one and it lasts like 3 days! I always attributed it to my PV and crazy high platelets but they are so much better on Besremi. Talked to my mom and she said hers were similar at my age, 41. So I think some of it is my age too. I never had clots until after I turned 40 and was diagnosed with PV when I was 38. Hope this reassures you.

[junebuggy in reply to KLCTJC]

Thank you- so rarely that we talk about these things its hard to know whats normal and what to get checked ot!

[Devilgirl]

I was always irregular but heavy bleeding with clots even before mpn diagnosis. Found out after having a hysterectomy for an unrelated reason that I had had endometriosis.

[junebuggy]

Sorry to hear that- hope things are much better now! And thanks for sharing- endometriosis was one of the things i was worried about, so will read up more

[MAP44]

Hi I was diagnosed PV after 50, although I had symptoms for years before. I had a regular cycle with heavy clotting, just assumed it was because I was getting older. It did not last any longer than 5 days usually though. My 22 yr old daughter has ET. She was sent to a MPN Specialist and Gynaecologist to talk about birth control and reassure her that having a family in the future was possible. They were amazing with her and she went with an iud they recommended. Her periods were irregular but a few years on and she is very happy and her cycle is regular and only a few days now.

[junebuggy in reply to MAP44]

Thanks- that's really good to hear!

[Lucy2022]

Hi!

Your week of spotting sounds hormone-related and potentially more like a women's health issue. Spotting before periods can be caused by progesterone-hormone levels dropping sooner than it "should" towards the end of your cycle.

There are some great resources out there to do some reading about women's health/periods/hormones if you're interested. I personally have found that having a strong understanding of how my body works naturally as a woman and optimizing my menstrual cycle health helps me differentiate and eliminate what could be a women's health issue versus related to ET/something else.

Dr. Lara Briden has 2 great books: The Hormone Repair Manual and The Period Repair Manual.

You can also look into Dr. Aviva Romm and Dr. Jolene Brighten - they have lots of resources on hormones, perimenopause, heavy periods, etc.

[junebuggy in reply to Lucy2022]

Thanks Lucy- I will check these out!