Menopause and ET

[teddy21]

I’ve been living with ET for about 10 years treated very well with pegasys. I am pretty much convinced I’m in the perimenopause and am wanting to find out about use of HRT in women with blood disorders. Does anyone have any experience of this?

[Angeltwin]

Hello I have ET and I take hydroxy I feel Iam going through the menopause but was told cannot have hrt With my condition not sure if it’s the medication or my condition but they won’t allow me to have hrt hope this post helps x

[SueYoung]

I got a flat out no from my haematologist he said it was an additional risk. I am now 61 , through the menopause for 5 years but I'm still getting the hot flushes and night sweats. I'm just used to all the symptoms now. I adapted, I no longer wear sweaters just cardigans as they're quicker to whip off and on. Lol

[teddy21 in reply to SueYoung]

This what I’m worried about but mixed responses on her already. It’s all about individual risk and benefit I guess. Take care x

[SuET2017]

HiI’m et triple neg, currently on peg interferon 45 weekly. I have not had any clotting incidents.

I was taking HRT when I was diagnosed In 2017 and my haematologist said to continue taking it. I am still taking and have had no problems.

I guess it’s about balancing and taking your risks into account. For me HRT improved my quality of life and reduced risk osteoporosis, which we have in our family.

[Titatagg]

I also had a No ! when I asked about HRT as I have PV and HRT has a higher risk of blood clots apparently . 😏

[teddy21 in reply to Titatagg]

Thank you. To be honest I was expecting that response but mixed responses on here already which gives me hope. Stay safe x

[JojoWonder]

I was recently told that I could take HRT but the oral version would be the only one I would be able to take because of lower clot risk. I was told that I’d have to have a coil fitted - which has had very bad press at the moment - to go along side it. I’ve declined and will manage without.

[ciye]

I was told no by one go and one agreed to the patch as less risky, then issues with supply arose, then covid and even now getting to see a GP is really difficult.

[Minu68]

What differing responses so far!!! I am menopausal, ET JAK2, and taking Hydroxycarbamide and aspirin. I have been struggling with sleep deprivation due to severe night sweats, and my gp and haematologist have agreed for me to try Hrt to see if it will ease some of the things impacting on my sleep and daily living struggles. I was told I could only have topical Hrt, as there is less risk of a blood clot. So I have been on the Hrt patch for 6 weeks now. My overheating does seem to have eased a little, but I'm certainly not yet feeling great, as many women seem to do once they go onto Hrt. It's to be reviewed 3 months after starting it, as it takes up to that long to come into full effect.

I'm so confused that others have been told to take oral only, opposite to what my haematologist/gp say. Others appear to have been told that they can't go onto Hrt. I wonder what the reasons are for such differences. I am considered higher risk for blood clots as I have already had one , before my ET diagnosis.

[NedKel65]

Hi there Yes I’m hearing you all !

I have ET/PV on Hydrea for approx 4 years now

Going through menopause too 🙄

It’s the mood swings that I really struggle with

I have same feeling hot/ night sweats etc

I was told probably not HRT too. GP and Haem have said to try and get through without HRT due to higher risks of blood clots as you all have said too !

Have tried natural therapies (Remefemin) however never made any differences

Hoping they ( researchers)come up with an answer as there are many women in same position as all of us. We are in this together 🥰

[teddy21]

It’s hard isn’t it as we know there is so much misinformation about menopause and HRT anyway let alone if you have conditions such as ours.

[hunter5582]

I was just talking to one of our friends with ET who had HRT post-breast cancer treatment. Several doctors refused to treat her despite how miserable the hormonal imbalance was making her. She finally found a doc who understood how bad the symptoms were who prescribed an estrogen-only hormone replacement. She reports that it helped with no adverse effects.

Like so many of our choices, this is a situation where you have to do a risk/benefit analysis. None of the options are without risk, including not treating a symptom. I have no idea of whether any form of HRT would help, but I do know that feeling miserable and being ignored is not a viable answer. If after exploring all of your options with your care team (including a MPN Specialist) you feel that HRT benefits are worth the risk, then go for it. It is your body - your choice. You may need to do as our friend did and keep pushing for a solution until you find one. I hope you are able to do so soon.

[JediReject]

Hi teddy21, , my good lady didn't wish to go down the hrt route and from what others have said it seems it won't be without risk for you. I bought my wife a book titled "The new natural alternatives to hrt" by Marilyn Glenville which she found useful in parts as she believes in natural remedies. Of course there are probably lots to choose from on the same or similar theme.

It might help to try some natural alternatives or get some advice from a herbalist perhaps but I think there is also likely alot of faddy stuff out there which only serves to get you to part with your hard earned cash.

I hope you find a solution.

Regards - Chris

[NewBloom]

Hi, I have PV and when I queried HRT a few years ago was told to high risk. Advised the estrogen can thicken the blood.

[Mandy-moo74]

Hi teddy21I have ET diagnosed 30 years ago, I went through the early menopause at 39, in my family too. I spoke to my GP and she suggested because of being so young that it would be really beneficial and crucial I go on HRT, but not pushed on me I had all the facts to make my own decision. I decided to use HRT patches as topical so less clotting risks have been on these now for about 5-6 years with no issues at all, will try to stay on them for another 4 years and then that should be enough to replace what I should of been making anyway. I would say everyone is different and has different worries, so always get all the info and make your own call but for me it worked great

[BlushNoisette]

Hi Teddy,

This is a tricky question.

I think you should discuss this with your haematologist first.

I will be 70 this year. I took HRT for 5 years until I was 55.

My GP took me off HRT.

Looking back I don't know whether it was a good decision; I didn't know that within a year I would find out that I had PV. So, I could have had a serious blood clot if I had stayed on the HRT.

However, the research that prompted him to take me off HRT turned out to be seriously flawed. Without HRT it has been my experience that a woman's vagina dries up and the tissues atrophy over time. Consequently sex becomes more and more painful even if you use a good lubricant.

I think a good gynicologist who specialises in treating menopausal and post menopausal women could advise you about caring for your vagina. Then you'd have to weigh up the two sets of advice ....... from your haematologist and your gynicologist.

It's very important that your partner understands all the issues and can support you with which ever decision you feel that you have to make.

[soomoo]

Hi, I've et, jak2 pos and now myelofibrosis. I'm 50 but started hrt 3yrs ago. I take asprin , hydrea and ruxolitinib. Hrt was approved by professor Harrison. The transdermal route is preferential eg gels and patches as a lower clot risk. I apply gel and take progesterone tablets 2nd half of the month. My gp initially was sceptical so I went to the top eg the prof. It's all about creating a balance and the quality of our lives. I was a gynaecology nurse so was aware of the clotting risks hrt can produce but I researched and gained the best advice. An approach, I believe, we all should take in managing our conditions. Please don't accept a "no" , go to the experts. My life would have been a misery without the help of some hormones and I'm a very strong clot risk. Do your best to prevent this eg drinking lots of water and maintain a healthy diet. I hope this helps and all the best x

[Linnie5]

Hi. I’m 66 have ET jak 2 taking HU and aspirin. suffered badly from night sweats and all day sweats as did my mum. I’m on HRT patches and it’s helped a lot although not with sleep issues (which are quite bad.) But I feel more human and less stressed. I will continue to take as long as I’m allowed. Hoping not to have issues with next prescription. ! Does anyone else have sleep issues? If so what do you do?