I was diagnosed by accident after going to the Doc for really heavy and painful periods. Paracetamol wouldn’t touch it and I can’t take Brufen anyway due to having IBS.
So now I have a diagnosis of ET, I’m on 75mg aspirin which, as you’ll all be aware makes bleeding even worse and can’t be taken with Brufen.
My consultant took me off the oral contraceptive pill due to my diagnosis. So my question is, what do any of you ladies that may have similar issues do for excessive bleeding and pain with an ET diagnosis? Is a coil the only viable alternative? (Ps it’s not contraception I’m after) I’m due to have my first phone consult since diagnosis 2 months ago with the haematologist tomorrow so I want to write some ideas down to ask her.
Many thanks.
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MadamCholet1
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Sorry to hear about your difficulties. I am past the age to worry about contraception but one suggestion I would offer is to ask your consultant about swapping your aspirin for clopidogrel. I am very sensitive to drugs and was initially diagnosed with ET after a very minor stroke 5 years ago. I was prescribed Clopidogrel (a platelet disaggregater) then and have taken it without problems ever since. I hope you find helpful solutions.
I read your post with interest as my PV diagnosis was found after having similar issues. Yes, I had a coil fitted but for me it didn’t work. I know that it does for some. Ultimately I had a hysterectomy- I was 42 and had no intention of having any more children. I’d had fibroids and cysts which was making the whole situation worse as well. Apologies if this seems to be too drastic a solution.
Sorry to hear you having these troubles. I too was very troubled and almost incapacitated with heavy bleeding and eventually was operated on and they scraped the lining of my womb. All was 100% after that. Not sure if this is still done, was quite a few years ago.
I too am Jak2ET and wonder if I have had it for many years undiagnosed?
Ask about tranexamic acid. It helps manage the heavy bleeding (you’ll probably have to stop taking aspirin for a couple of days but that’s OK). Mefananic acid will help with the pain. You may find you need some Omeprazole while you take the drugs just to soothe any heartburn etc if you get it.
There are other potential surgical interventions (as mentioned above) but worth beginning conservatively. The drug interventions might be all you need. And as your platelets come under control that too might make a difference. I’m assuming you’ve checked whether or not you are anaemic. That can make you feel a bit rubbish.
The answer to your question may be more complex than it appears on the surface. Thrombocytosis can make you bleed more heavily rather than more prone to clotting. Aspirin or other blood thinners can compound this problem. This tendency toward hemorrhage rather than thrombosis can become so severe that it is actually a bleeding disorder called Acquired von Willbrand Disease (a condition linked to MPNs). AcqvWBD can occur at platelet levels lower than previously thought (a low as 800K). Your von Willebrand factors should have been checked, but suggest making sure.
The JAK2 mutation can also cause your body to produce too many inflammatory cytokines. This is thought to be responsible for a host of the secondary symptoms people with the JAK2 mutation experience. Systemic inflammation can cause a great many problems that are often overlooked as being MPN-related. This could be part of what you are experiencing. Consultation with appropriate specialists is really important to look at this issue.
A few suggestions
1. Most hematologists rarely if ever treat MPNs. They are not always aware of the related issues and complexities of managing MPNs. Suggest consulting with a doc who specializes in MPNs. Here is a list mpnforum.com/list-hem./ .
2. Consider consulting with an Integrative Medicine (aka Functional Medicine) specialist. These docs consider the whole body as a system and take a holistic view. Many of the specialists we see are great at what they do, but do not always look at the patient as a while person with interrelated systems. Integrative Medicine docs are really good at putting things together and will often consider alternative approaches others docs do not think of.
I do hope you find relief soon. My daughter, who is JAK2 positive like me, has experienced similar problems to what you describe. I have also experienced issues due to the other effects of the JAK2 mutation that have been a problem. Fortunately, we have found some things that help.
I have real empathy for you regarding heavy, painful periods. It is horribly debilitating and exhausting. Few people, who do not experience them at their most aggressive, ever know what the pain & exhaustion they cause can be like & my experience is it's sometimes not taken seriously because menstruation is a 'normal' part of life.
My first thought on reading your post is, are you in fact also suffering with endometriosis as well as ET??
Endometriosis, if you're not familiar, is a chronic inflammatory condition that causes painful or heavy periods & affects 1/10 women in the UK. I was diagnosed 2010 after the pain & heavy bleeding I'd struggled with for 25 years suddenly became acutely worse. (Average of 6-8 years for diagnosis due to lack of understanding of the disease).
I recommend asking for a referral to a good gynaecologist, and better still, one who has knowledge of MPNs - if such a thing exists.
Secondly, as EBOT suggested, mafanamic acid is an effective pain relief for menstual cramps. Very occasionally, on the worse day of my cycle, I may some months take 2 ibuprofen, but otherwise I stick to paracetamol and heat. Thankfully my endo is under control now so I rarely have heavy bleeds or severe pain, but I DO manage by diet and hydration carefully to enable this*.
Thirdly, I highly recommend using a diary or period tracking app to keep a record of your periods month by month. It is extremely useful when going to a medical appointment to be able to clearly state durations, frequency and severity of symptoms assertively. I wish I'd started this sooner but now have consistently used an app for several years to make notes so I spot any changes / patterns. In fact I now also add ET symptom flare ups too because my fatigue is at its very worst 7-10 days before my period begins. I use "Period Calendar" but there are many to choose from.
Interestingly I have long questioned if both my ET (JAK2+) and my endometriosis are inter-connected. My endo suddenly became far worse in 2010 leading to diagnosis after 3+ hours of Lazer surgery to remove endometriomas (deep cycsts) from my ovaries and adhesions & endometrial cells from my abdomen & uterus. It was from this point that I have regular blood count records & therefore a paper trail of my steadily elevating platelet count (I fell pregnant shortly after surgery then had several years of random symptoms, for which I had bloods done & now know these were due to my MPN). Since diagnosis of my MPN in 2018 I have been on just aspirin (platelets around stable at around 750 - 890 since then). My bleeding is not significantly heavier, although I am seeing changes that I'm noting - these may be due to my age unf!!
I really hope that your are able to get some answers asap and especially that your are able to see an improvement in your pain management / bleeding. Keep notes and keep asking for your GP to investigate & know that you are not alone.
All the best!
PS *dietary support to consider:
There are many helpful nutrients to promote good mentrual health, as well as foods to avoid, which exacerbate cramps. Interestingly they are also anti inflammatory food therefore benefit circulatory health and for our MPNs (NB **seek guidance from your consultant for some suppliments / nutrients!):
increase intake of *"Omega-3 Fats; **starflower oil supplement (with a high GLA count); eat lots of fresh fruit, veg & wholegrains & try a gluten-free or low FODMAP diet; keep well hydrated;
avoid trans fats; reduced red meat consumption; limit caffeine and alcohol; reduce processed foods and sugar. Low dairy is also specifically recommended for those with endometriosis.
Thank you for the reminder about functional medicine. My acupuncturist suggested this for me also. I have found the online databases for practitioners in the UK a bit overwhelming to sift through when trying select someone based on their range of expertise.
Have you seen many and are you able to recommend anyone who has an understanding of MPNs also? As well as my MPN and endometriosis I also have calciferous tendonitis, myofascial pain syndrome and gluten intolerance so my inflammatory response is hyper reactive. I wasn't sure if the practitioner I seek should primarily be an MPN specialist or chronic pain / rheumatology??
I found a really terrific Functional Medicine doc near me, but she is in Leesburg, Virginia here in the States. After looking over my case, she agreed that systemic inflammation was at the core of much of what I am experiencing. In addition to the Polycythemia. other inflammatory conditions I experience are: osteoarthritis, plantar fascitis, insomnia, GERD, eczema, and like you - calcific tendonitis. I also experience intermittent hypercalcemia (unxeplained) and intermittent day-long spikes in blood pressure (unexplained). Some things are clearly inflammation-related - other are not so clear.
The bottom line is that "related" or not - it is all occurring in the same body. The body is an interrelated system. One thing affects another. Taking a holistic - systemic view just makes sense. Paying attention to the role of nutrition (was also found to be Vit B/Folate and magnesium deficient) and exposure to toxins (elevated mercury levels) is also really important. This is where Functional Medicine docs are so helpful. FYI: my current interventions for systemic inflammation are: Curcumin, SPM Active, L-Glutathione, I loosley follow an anti-inflammatory diet. I also practice Qigong, which helps in a variety of ways (based on same principles as acupuncture).
Hope you find a good Functional Medicine provider ASAP.
Please investigate quercetin and kaempferol for inflammatory cytokines. Be aware high levels of curcumin may prevent iron absorption so use it between meals. I recently learned thiamine requires magnesium to become it's active form. There are many things causing magnesium loss in addition to low absorption forms of magnesium. Search on "krispin magnesium" and "mgwater" which are just magnesium information sites
Thanks for the advice. The other things I am taking include SPM Active, which is a fish oil derivative that concentrates the anti-inflammatory agents, and L-Glutathione which helps as it is anti-oxidant/anti-inflammatory. (There is some research supporting its precursor N-Acetylcysteine for inflammation in MPNs). I do watch how all of these supplements interact as many of then are also blood-thinning agents. Will review with my Integrative Med doc.
The magnesium deficiency is likely related to my long-term use of Nexium and/or an aging gut. The last year when I was on hydroxyurea also compromised my intestinal endothelium, though I would hope to have recovered since discontinuing. My PCP posited that this may be part of the issue. Don't really know, but fortunately magnesium citrate and Methyl-B Complex supplements have returned my levels to normal. I also had a Vit D deficiency, which is related to another condition, Neurofibromatosis Type 1. Supplements have returned this to normal too. I would note that I do eat a very healthy nutritious diet. One of the things I like about the Integrative Med doc is the attention paid to the role of nutrition and the importance of how the body functions as a system.
Thanks again for sharing the information. We are truly stronger together.
Hard periods are so debilitating, especially when it’s something you think you have to just put up with because it’s considered “normal” for women. Truly sorry to hear you’ve been suffering so badly with them.
I was the same for years. I got some mild relief on the pill but had major thrombosis so had to come off. Tried a copper coil which made bleeding heavier and pain worse. I have a couple of fibroids but no endometriosis. Moved to Mirena which (along with some supplements) was a game changer for me, I couldn’t believe the improvement!
Happy to try answer any questions you have about the coil or to send you some recommendations for supplements that have helped me if you’d like 💚
Thank you for starting this fascinating thread, from which I gain the impression that heavy or painful periods may be another sometimes inflammation-related symptom that can be correlated with a present or subsequent MPN diagnosis ...
It would be an exaggeration to say that heavy/painful periods (now thankfully years in the past) ruined my life but they certainly didn't help, causing practical problems and undermining my self-confidence. I didn't realise that the bleeding and pain I had might be excessive or at a level where medical intervention would be appropriate. However, I suspected that inflammation might be relevant because the pain was eased so much more by Ibuprofen than by Paracetamol. One thing that definitely helped me was Vitamin B6, from both the physical and psychological points of view.
I hope that you are now getting effective help. Good luck!
You Hematologist should set you up a consult with an appropriate specialist to address your Et, birth control and even birth. I feel it would be to benefit to ask for a referral if they do not offer.
Squeaky wheel gets the grease, so be persistent and proactive with you health and your future.
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have ET Jak+ no clots or any symptoms- only on aspirin.
ET JAK2+ is it invasive?
ET JAK2 positive 
ET/Jak2 postive
MF , ET JAK2
