ET and HRT

[jodary]

HiHas anyone with ET also taken HRT. I was prescribed Oestrogen pessaries to treat post menopausal bladder issues , I will obviously check with haematologist, but as all vary with some erring on side of caution, was wondering if anyone else was given the go ahead. I really do need some help with the issues I am experiencing. I was even wondering if hydroxycarbomide could be irritating my bladder but am hoping these pessaries might help. As they are not oral HRT and not long term. Before discussing with haematologist would be useful to know if others have used them. Thanks

[Mazcd Partner MPNVoice]

Hi Jodary, we held a virtual forum in Jan about HRT and MPNs, it might help you to have a look at the video, you will find it on this post

healthunlocked.com/mpnvoice...

best wishes, Maz

[jodary in reply to Mazcd]

Thank you so much, will look at that now

[hunter5582]

Based on what you relate, it sounds like you have a good plan to address the issue. Very thoughtful and wise approach to the issue.

While hydroxy-bladder issues are not addressed by all sources, there is this advisement from Mayo Clinic. mayoclinic.org/drugs-supple...

Side Effects. Check with your doctor immediately if any of the following side effects occur: More common ... painful or difficult urination ...

Not sure that is relevant to what you are experiencing. Hopefully your MPN care team is already aware of the issue if it is relevant.

Please do let us know what you learn and how you get on. Others on the forum have brought HRT up and would benefit from your experience and knowledge.

[jodary in reply to hunter5582]

Thank you Hunter. I was aware of the possible side effects but the haematologist seems to think that side effects would happen as soon as you start hydroxycarbomide. I have been on it for 3 years with these symptoms happening randomly. This latest time I had been out on a long walk in warm weather and will admit to not drinking enough as there were no facilities on this walk. I wondered if that contributed to it as I then took hydroxycarbomide and possibly irritated my bladder but I really don't know. I would like to rule that out but it's not easy unless I try this treatment and see.

[hunter5582 in reply to jodary]

That sounds like a good assessment of the situation. It may not have anything to do with the HU at all, but it is best to stay well hydrated when taking it. Hope you find the HRT suitable and that it addresses the issues,

[Mauritiu]

Hi JodaryI have PV and I am on both HRT and oestrogen pessaries. I was on HRT before my diagnosis and started using the pessaries after. I have had no issues with taking both and they work well for me 😊

I hope your bladder issues sorted.

[jodary in reply to Mauritiu]

Thank you for your reply, I was taken off HRT after my diagnosis as it was deemed another risk factor, I do wish I had been able to remain on it as I felt really well on it. This was 11 years ago so maybe things have changed. Hopefully the pessaries may help me, I'm still awaiting a reply from my mpn nurse.

[Mauritiu in reply to jodary]

Yes it does seam people are taken off it on diagnosis, I have never had an issue with this, I don't want to come off HRT, ever 😄Let me know what your MPN nurse says , 😊

[jodary in reply to Mauritiu]

Thank you , I will. X

[jodary in reply to Mauritiu]

So MPN nurse said its OK to use the pessaries, reading the leaflet ( which is sometimes a bad idea ) it says may affect thyroid hormones , which is swapping one issue for another.

[Mauritiu in reply to jodary]

The info leaflet puts down all the possible side effects, the likelihood of it happening are rare, as you say , don't read the leaflets 😄I hope they help 🙂

[jodary in reply to Mauritiu]

Thank you, great advice , am hopeful !

[Roxanne22]

Hi Jodary Being diagnosed at 49 I was on the verge of menopause, and was advised (well meaning) by my male haematologist that HRT was not an option for me. I suffered the effects of terrible sweats - up to 30 times a day, 2 hours sleep a night for weeks, and vaginal/uterine discomfort so uncomfortable that I felt I must have had a prolapse. I soldiered on, and eventually rang Claire H in a state of distress. She was marvellous, and as a woman of a certain age listened to my situ with empathy - she is insightful to see that I am a whole woman, not a walking MPN vessel, so her balanced view was to take the HRT, at the lowest dose poss to alleviate the symptoms - she recognised that the symptoms I was experiencing were not helping me to thrive with a chronic health diagnosis. I hope that you find the guidance to alleviate your bladder symptoms, whilst honouring your underlying condition - I am sure that whilst each individual has different needs, we need to take a 'balanced' approach to living our best lives. I am now three years into menopause and continue on a low dose of HRT which is suiting me, in terms of managing menopause. Topical hormones (in the vaginal area) may be better, as these will not be systemic and treat only the localised area. I read with interest about the availablity of platelet rich serum, taken from women's own plasma and injected with micro needles to heal/plump up vaginal tissue, by prompting cell renewel/inc collagen, although I am not sure that this would apply to us (with platelets being so high for many of us) What I am highlighting is that there are so many innovative ways in which we can be caring for our bodies and our optimum functioning for our best physical and emotional health, good luck with your investigations and getting in touch with Claire Harrison x

[Roxanne22]

ps - I didn't say there but I have PV not ET but I imagine it poses a similar risk element, thank you and all the best.

[jodary in reply to Roxanne22]

Thank you

[Anag]

Hello Jodary,

I’m 58, on HRT but started bioidentical hormones in capsule form, progesterone and estrogen, in May. Last period was last October. I had light bladder issues for a few years before my diagnosis 6 years ago. Then it’s was completely gone as I went in the AIP diet (but also stopped eating foods that I was not tolerating), went organic, started nutritional supplementation to fix my many deficits. I was on Anagrelide at the time.

I started Besremi in October 2022 and have halved my Anagrelide intake. Besremi caused me to run for the toilet on the 4-5 days after the injection, then I’m ok. Starting the hormone therapy in March helped reduce that. I still have a tiny bit the first few days.

I know that hormones have a super uptake when used on mucous membranes. Would prefer a suppository but the bioidentical an are not available in Austria yet. Bio identical is safer than the synthetic hormones. I also take bioidentical thyroid hormone.

I took HU for three days two years ago to try it out and had terrible nervous system problems. I couldn’t coordinate my hands, was walking around the house in a daze. Memory out in the stratosphere. Stopped it immediately.

Bladder issues are definitely not fun. Hope everything works out for you! 🙂

[jodary in reply to Anag]

So not fun, you do feel like you are struggling to get anyone to help . I am post menopausal, have ET and am hypothyroid. I don't have an understanding GP and haematologist only interested in platelets. And when you feel rubbish you don't have the energy to fight

[Anag in reply to jodary]

I understand you COMPLETELY! I gave up on conventional medicine long time ago except for when there’s an emergency. I was told I could not do anything for my Hashimoto, but I have been able to reduce the illness by half having reduced my thyroid T4 from 200 µg to just 100 µg daily after 20 years of struggling. The AIP diet that I was put on by my functional doctor, brought wonders to my health, no more depression, eczema, bloating, smelly, sweat, or a smelly mouth, brain fog, histamine, intolerance, and more. I got all 35 mercury fillings out of my mouth and replaced them with ceramic inlays. It was two years of crazy ups and downs, especially mentally, but it’s over and I am much healthier.

Mercury fillings are one of the reasons for Hashimoto. Other reasons for under function is not enough iodine selenium or vitamin D. Vitamin D levels should be optimal around 70 or 80. Anything 50 or less is a deficit, although it’s in the normal range. I keep my vitamin D around 80 to 100. I take between 40 and 60,000 IUs weekly in pill form. I do everything possible to keep my body, balanced and healthy.

for weakness, I take one to 2 g of acetyl l-carnitine. Also 100 mg of CoQ10. I got my life back! These two substances help you burn your food better. The Co Q10 helps, especially the mitochondria in our cells, produce more energy, and therefore strengthen every organ and muscle in the body! There are many on this forum that take these.

please try to find a good natural doctor to do a proper tests on your body to find out which deficit to have. We all have deficits, especially if we have illnesses and also don’t eat Whole Foods. Processed foods or a no no in my house.

[RazB]

Hi, I was about to write my experience but having read Roxanne22’s words I don’t need to! She has had an almost identical exp to me, although my meno symptoms have been anxiety, very low mood, exhaustion etc. no night sweats. Like her I tried to push on as was advised not to take HRT due to family breast/ovarian cancer history, and have ET. I was absolutely miserable for several years and finally realised that I had to change things when I found myself wanting to either kill my husband or myself (sadly I’m not joking, although black humour has become my friend!). I do believe now that the risk is worth it (for me) and I only wish now that I had pushed harder years ago to get the support I needed. HRT is fantastic if taken properly and with guidance and for those that need the help it is a complete game changer. X

[Cokopops]

Hi Jodary. I’m on HRT patches and Hydroxycarbamide. With the ok from haematologist. Absolutely no problems. Best wishes

[jodary in reply to Cokopops]

I'm so pleased for you ! it does upset me though for everyone who's been taken off HRT on diagnosis and has had their quality of life affected.

[Cokopops in reply to jodary]

I was taken off HRT..without consultation, but not by haematologist., by GP. I was doing OK until I started Hydroxy and then ..Oh my goodness. Hot flushes galore. I spoke with my nurse and she wrote to my GP.

Im agreeing with Hunter when he says, be insistent for the kind of care you want. Ive just had another episode with GP. I take a sleeping pill when I can not longer function after several sleepless nights and re ordering my prescription , the GP decided to half the dosage . I was livid. I wrote to them and the matter was settled . It doesn't do my high B/P any good this kind of situation..

Be polite but firm! Good luck

[jodary in reply to Cokopops]

I am now post menopausal so don't think I would get HRT now but am going to insist on the pessaries at least. Might alleviate some of my issues. Thank you for response.

[Cokopops in reply to jodary]

Good for you! Incidentally, I'm also post menopausal at 79 years old. I had an hysterectomy at 42 and went on HRT. What a blessing it's been for me and still is! Take care

[jodary in reply to Cokopops]

If only I knew then what I know now, 11 years ago the thinking seemed to be you have to come off HRT. And newly diagnosed I accepted that .

[Anag in reply to Cokopops]

if I can’t sleep, I have a melatonin Creme, about 10mg. We can take much more than that. If we take more than 10mg, we don’t get any sleepier, melatonin then works to detox the brain over night by activating the glynphatic system (our brains immune system). Our brain clears out about half its mass every night and fills up again the next day.

ncbi.nlm.nih.gov/pmc/articl....

I put the melatonin cream on my inner lower arm and smear them together. This works throughout the night and not just a few hours. Much better than doing chemical sleep aid. They can also become addictive. Good sleep is critical to good health!

like Hunter, I educate myself and have put together a good team of doctors and help them help me! We need doctors who listen and care and who can think further than just platelets! 😉

Anag

[KLCTJC]

Thank you ladies for posting this!!!! I posted something yesterday and got no response. I am 41 and I am having what I think it combo of perimenopause and side effect of phlebotomy and Besremi. I think I am going to have to take something temporarily to stop this prolonged period! But I was scared. I think once I can get into OB in 2 weeks we can talk other strategies. But I am grateful for your post! Mine are a little different but not by much! I am close to menopause, it is knocking at the door! Glad to hear others are on hormones safety .

[Gaithersburg]

I started on Evorel Sequi Patches in April this year for my HRT and I am starting to see some benefit already although it's still early. I have ET and am on Anagrelide. Hope it goes well for you.

[jodary in reply to Gaithersburg]

I do find it upsetting that so many of us were told definitely no HRT and had to stop. Over the years life could have been so much easier. I am also hypothyroid which gets overlooked as I'm convinced my GP doesn't want to get involved as I am" under haematology ". But also haematology don't want to get involved with other issues. Maybe it was too long ago and that was the thinking as it was 11 years ago when I was diagnosed with ET and taken off HRT. Either way I do have some distressing urinary symptoms and it's impacting on my life .

[Exeter21]

Yes Jodary I have been on HRT patches many years due to hysterectomy young.

I have remained on it since my ET diagnosed last year with no problems. My consultant is aware & to come off it just gives horrendous night sweats so I will be happy to continue . Julia UK

[Runner999]

I do hope you are religiously doing your Pelvic Floor Exercises as they are the primary way of aiding bladder control !

[jodary in reply to Runner999]

Yes, but the problems are similar to an UTI but no.infection shows. It's not about bladder control as such but painful irritation and sometimes bleeding

[Runner999]

oh dear ! sorry, never heard of that ; but I do know how painful a UTI can be - i keep emergency antibiotics for very first "on no! " feeling as even a few hours later I would be doubled over!

[Runner999]

Bleeding sounds bad. I think you probably need a check for cancer ? Sorry.

[jodary in reply to Runner999]

Bleeding can occur with UTI and with inflammation or irritation of the bladder lining and vagina, and can also be caused by lack of Oestrogen as well as some medications .I have seen a Dr you know! I haven't just come on here asking for medical advice, just to ask if anyone with ET are able to use the Oestrogen pessaries that have been prescribed to me by a Dr !

[Wyebird]

hi I’ve recently been prescribed hrt cream. I just informed my blood nurse. It’s been cleared with my team because it’s cream. Do they know about your condition?

[jodary in reply to Wyebird]

HiYes they do and my haematologist has given the go ahead . Apparently not much reaches the bloodstream as its localised . Am hoping yours helps as well.

[Wyebird in reply to jodary]

amazingly so. Didn’t realise how bad I was xx

[jodary in reply to Wyebird]

We're you having similar post menopausal issues to me ? I've not noticed any vast difference yet but it's early days. I was taken off HRT when I was diagnosed with ET 11 years ago but apparently now a lot of people do take HRT with ET.

[Wyebird]

hi I’ve sent you a private message