Menopause, HRT and MPNs: Does anyone here know the... - MPN Voice

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Menopause, HRT and MPNs

LRH1977 profile image
17 Replies

Does anyone here know the safety of HRT with MPNs? I'm just wanting to prepare myself as think I'm perimenopausal and would like to be informed. I don't think my GP will have much knowledge on this so thought I'd ask here. I don't have an appointment for review by my haematologist til December.

If anyone here has been through their menopause and used HRT or any other more natural ways, can you tell me how you managed symptoms on top of your MPN, and if you're out the other side are you well?

I have ET Jak 2+ since 2012 on clopidogrel only.

Many thanks

Lucy

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LRH1977
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17 Replies
JediReject profile image
JediReject

Hi Lucy -1977 , , A great year btw I was 16 without a care enjoying life. , our fabulous Queens Silver Jubilee , sure I went fishing on that Public Holiday in June I think, The Clash rocked The Casbah and the Sex Pistols rocked the world , a nag called Red Rum won The National for a Hat Trick turning my modest 50p each way into a night out, Liverpool win the league, and of course a Galactic asteroid of a film Star Wars released! ! Enough history lessons though I'm sure those of us who were there recall something memorable.

Just to say I don't know if you saw it but Teddy 21 posted about 1 month ago on the same thing so if you search the members and check out that post it might help. I recall it because I responded to say a goodly time ago I bought my good lady a book titled The New Natural Alternatives to HRT by Marilyn Glenville which my wife found useful in parts as HRT was something she wished to avoid and preferred a different approach to managing her troublesome M symptoms.

Good Luck with your quest , , as someone said a long time since 'forewarned is forearmed' .

Chris

piggie50 profile image
piggie50 in reply to JediReject

Oh Chris, yet again you make me smile 😀 . What a great memory you have, I’m so pleased that didn’t go along with your stem cells! xxSorry Lucy, I can’t help, luckily, I didn’t suffer any menopause symptoms.

Happy sunny Sunday.😎

JediReject profile image
JediReject in reply to piggie50

Well it was memorable because I began work in October after a short stint on the dole getting my £9 weekly Giro (I was in Girobank later on - long gone) . Of course it wasn't all good as I recall both the IRA and that deranged Yorkshire Ripper Sutcliffe were active. Being honest my memory isn't that good im afraid Judy , it was jogged into life by a recent tv documentary. Trust you are as well as can be. And having a good day.

Chris

LRH1977 profile image
LRH1977 in reply to JediReject

Yes exactly! Thanks Chris, I'll look at the book you recommended as I'm always looking for natural ways to manage any symptoms; HRT would be a 'last resort' to be honest. I just need all the information prior to being in the throes of menopause.Haha, apparently 1977 was a great year, that made me chuckle!! 😆

JediReject profile image
JediReject in reply to LRH1977

Lucy, as a guy it's probably unusual but I have a real hang up about the big 'M'. My wife has lasting symptoms many years later and I get wound up seeing articles about how liberating it is and how women are suddenly set free and their love lives are fabulous. However for many women / couples this isn't the case.

Maybe HRT is the best to avoid these long term issues if you tolerate it and hopefully your symptoms will be minimal. In the past year my wife tried some HRT cream to try to get some relief but it triggered a bleed the few times used so she/ we decided to cease it

I hope you find what works best for you.

Chris

Mandy-moo74 profile image
Mandy-moo74

Hi LRH1977I have ET since I was 18, diagnosed them and I am now 47. I have been on interferon and more recently (2 years ago ) pegasys. I went through peri menopause at the age of 39. Heavy heavy periods that would last weeks and then nothing for mo this this went on till I was 41 and then scans and test co firmed peri menopause. I was placed on HRT patches, as these had less risks associated so at this time as it was felt by my Gp and myself that this was the right thing to do for me for a few years to replace what I should be naturally producing. I think you should make your own decision based on what you feel is right and professional advice but I can honestly say for me, it has been a positive experience. I will be on them for a few more years until I would of naturally stopped my period anyway. There is a lot of info out there about HRT and your Gp should guide you where to find it to make a good choice for you but my journey has been very positive

Hope this helps

LRH1977 profile image
LRH1977 in reply to Mandy-moo74

Thank you Mandy-moo74, this is so helpful. Hearing a positive take on HRT is refreshing as there's been so much bad press which just builds in fear and stops women who are having terrible symptoms from even considering this as a treatment.

Malaika profile image
Malaika

HiBefore diagnosis I had hormone implants as had a full hysterectomy. On finding out I had ET my hem just said no more HRT.

I think you are best taking advice from your hem as we are all so very different.

All the very best

Malaika

ainslie profile image
ainslie

There is probably no black and white answer to it but I know of at least one other person with ET on HRT since decades.As I understand it the non synthetic eg bio identical HRT is safer and if possible maybe wise to check blood levels of the hormones to check you are not on too high a dose.

Minu68 profile image
Minu68

I am ET JAK2, started on hrt patches 2.5 months ago. Extreme nightsweats was main reason, gp and I discussed and decided to try the hrt to see if it would lessen the sweats. Topical hrt is safer for us than oral, but hrt does have bloodclot risk. So it’s a case of weighing up the risk in your own case, versus the symptoms and relieving them. My haematologist said it was ok for me to go onto hrt so long as it was topical.So far, sweats have reduced in intensity, less drenching. I’m less anxious, forgetful and confused, and feeling like it is helping, though no ‘feeling wonderful ‘ like some women find.

LRH1977 profile image
LRH1977 in reply to Minu68

I'm glad it's having some good effects for you, it's just so helpful to know that this could be an option for me. I hope things continue to improve for you. Menopause is so little talked about and people don't realise the impact it can have on your everyday life. All best 😊

Glagirl profile image
Glagirl

Hi! I’ve was diagnosed with ET (Triple Neg) when I was 15 and I’m now 49. I’ve had a long long drawn out peri menopause and have taken utrogesten ( progesterone tabs) for around 10 years for sleep and mood balance. Have been on and off oestrogel depending on blood work and symptoms. I’ve been told that the increases risk of clotting from topical estrogen is small but that I need to compare it to my need to balance off symptoms. Hope this helps x

LRH1977 profile image
LRH1977 in reply to Glagirl

Very much so, thank you for replying 🙂

Loubielou profile image
Loubielou

Hello Lucy,

I had pretty much the same questions 7 years ago. My GP was very knowledgable about menopause, but not about MPNs. Luckily I’m under the care of Prof Harrison’s wonderful team at Guys - so I had two sets of advice, and then weighed up the risks / benefits.

I was diag with ET aged 39 and had also been peri-menopausal through my late 30s. (I often felt pretty unwell)! At 44 my FSH level indicated I was post menopause. As this was classified early menopause, the risk levels for cardiovascular problems, osteoporosis etc were increased and my GP strongly recommended HRT. My haematologist was reluctant, and advised the lowest dose HRT patches would be the safest option. So that is what I went for. (I’ve had a Mirena coil since aged 38 which provides the progesterone).

Aged 46, my ET symptoms worsened, my platelets had been steadily increasing and I moved from being solely on aspirin to low dose Pegasys, which keeps everything super stable. I’m now 51 and due to come off HRT as it's the average age for menopause.

I wish you well and hope that you are able to find a solution that works for you,

Lou xx

LRH1977 profile image
LRH1977 in reply to Loubielou

Thank you for your reply, it's so helpful Lou. I think it's just good to know that there are options for us with MPNs, I definitely don't want to feel like I have to fight through with no life raft if I need it.Best wishes

Lucy

Karol_Rua profile image
Karol_Rua

Hi! I just found out yesterday I'm not perimenopausal YET but, like you, I'm beginning to think about menopause and treatment options. HRT is a NO according to both my haematologist and gynaecologist. They're both in agreement that the clotting risk with my ET (& two significant thromboses) is NOT an option. No idea about herbal stuff...

For what it's worth, night sweats from ET are, for me, possibly good practice for the menopause hot flushes

😆😂😂

Karol_Rua profile image
Karol_Rua

VERY interesting that a number of GPs and haematologists have prescribed HRT or close alternative. Just sharing my story that I won't be advised to use it...opinions differ I guess

🤔

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