HRT: Hello - does anyone have... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

2,948 members934 posts

HRT

Jojo91 profile image
9 Replies

Hello - does anyone have experience of HRT? My symptoms have become much worse post-menopause, and I have agreed to try HRT low dose to see if it helps. I do know collagen can be affected by hormones and am just hoping this may alleviate things.

Any experience/comments appreciated.

Written by
Jojo91 profile image
Jojo91
To view profiles and participate in discussions please or .
Read more about...
9 Replies
Tillyray profile image
Tillyray

Hi jojo.. I'm afraid I can't help with your actual question as I've no experience with HRT. I have read and heard that hormones can affect these conditions, especially at puberty and menopause.. I think I have become more affected with certain symptoms since menopause, but its difficult to know for sure as I am also currently suffering with relentless autonomic dysfunction symptoms which are currently under investigation, and overheating, sweating - to name a few- comes with that..

I was once offered HRT -pre hEDS diagnosis- but for me personally at that time, I felt the side effects would aggravate or increase my already difficult symptoms.. I hope someone comes on with knowledge in this area for you. I would also be interested to hear, because I know what its like and so all options are definately worth considering..Do let me know how you get on. Best wishes xx

Jojo91 profile image
Jojo91 in reply to Tillyray

Thanks Tillyray. Yes the major thing I'm struggling with at the moment is the sweats/overheating and had resisted the possibility it was hormone related, but have got to the point where I'll try anything as its so hard. Will let you know how it goes. I hope you have a good day

Tillyray profile image
Tillyray in reply to Jojo91

Thanks Jojo. I can relate to your struggles, its so so awful to cope with.. I have other symptoms which relate to autonomic dysfunction and it is relentless at present. My overheating comes with other symptoms and is also part of a flare-up. The night sweats also instigate a flare and it becomes an incapacitating period of illness. So I'm hoping, after all investigations that I can get some help with it 🤞. But I've no doubt that hormones must be playing a part in some way at this 'time of life'😉.. There are numerous natural medicines/ vitamins for menopause that may also be worth looking into, have you tried any? -They still need checking for contra- indications with prescribed medications- Like you, I just want to feel better than this and willing to give things - legally- a go.🙂.. Take care and stay InTouch. xx

Carrotsmama profile image
Carrotsmama

Hi Jojo, going through menopause myself for last 5 years, have tried several treatments, hrt not available to me because of heart thing, tried citalopram, made me so sick, then a pharmacist told me Red Clover replaces the oestrogen and it made her feel a million times better. Have been taking it for 3 months and I can honestly say 'what menopause' . Emotional symptoms and hair loss banished. I have hEDS and I feel so much better. Hope this helps.

Catherine

Jojo91 profile image
Jojo91 in reply to Carrotsmama

Thanks Catherine I'm glad you've found something that helps a bit

kschu58 profile image
kschu58

Hello, I'm fairly new here, I live in the US, Ann Arbor Michigan. I'm 61 and was diagnosed with hEDS around 8 years ago. I have been on HRT for over10 years, but not for menopausal symptoms. I have low bone density diagnosed as osteoporosis when I was 40, but now thought to be that I was born that way (due to hEDS),and did not develop it. This was told to me by a new endocrinologist that I was too young to have osteoporosis as it was a disease of the aged. I had just moved to MI and had been previously treated by a specialist at Mass General Hosp in Boston Mass. I had been on biophosphates for many years and the new endo doctor told me I had plateaued and they were doing nothing for my bones, and could begin having negative effects. He told me the only thing now that would protect my bones was HRT. I also had a strange transition from perimenopause to menopause in that for years I had irregular excessive bleeding. Treament included a few D&C's and a uterine polypectomy which made no difference, so I was put on progesterone to stop my menses altogether for a few years until a blood test revealed that my hormones indicated I had passed menopause. I was off all horomones for a few years until I was put on HRT for protection of my bones.

I can't say I felt any different during this time. I was just relieved not have the heavy bleeding and to have my hemoglobin come back up from anemic state. I did not seems to have any adverse effects from the HRT.

I also have PoTS, in which I get very hot very quickly, but do not have the sweats. Aging has definitely made things worse. My most distressing symptoms of hEDS now, are chronic fatigue, weakness and frequent episodes, this one lasting over 2 weeks, where I just feel sick all the time - all over. I can't do anything.

This is the longest message and one of the few I have typed in over two weeks. My energy will probably be all used up :(. But I wanted to reach out as I do have experience with HRT, but this was just my experience and we are all so different.

I'm also not good at keeping up with support groups, but I pop in from time to time. Thanks for making this group available. I also belong to the US based Team Inspire EDS group, but it's good to see how other parts of the world are dealing with the same issues.

Jojo91 profile image
Jojo91

Thanks for replying. It is helpful,to,hear of your experience, but I am sorry to hear also that things are so difficult for you. I hope today is a better day for you.

Jay66 profile image
Jay66

Hi. I am in peri menopause, which is not nice. I wish I could take HRT but because of my weird blood pressure (mostly high) they won't give me HRT. Watch this space though - I obtained some through means and am trying it out soon.

I have heard that people with our condition can get osteoporosis any time - not just when older.

Which bit of USA are you in? Some bits are good, but many are really bad for this condition.

The whole of the UK is pretty dire because although the temperature range is really beneficial, the general wetness/damp is a problem. Quite often, for the entire spring and summer it just rains continually....it is dependant on the Atlantic ocean weather currents.

Jojo91 profile image
Jojo91

Hello Jay. My GP was also reluctant to prescribe me HRT because of family history, but was open to a discussion of risk balance, and agreed,to a trial to see if it helped. So far done 3 months. It has stopped,the hot sweats, although my temperature regulation is still problematic, also,think I have more energy and less pain, so I am cautiously,hopeful. I am in the uk and agree about the weather not helping. Seriously thinking of working towards spending winters elsewhere. Whereabouts are you? Good luck with your HRT, I hope it helps. Let me know.

Rose

You may also like...

Disappointed with Rheumatology Consultant

the same experience as you all with a Rheumy Consultant. I prepared a detailed list of symptoms and...

Gastroparesis or side effects?

laxatives to take at home but the same thing happens. Daily doses of Lactulose and Movicol but so...

Endometriosis and EDS/HEDS?

scared of having an anaesthetic and being under for possible surgery. I understand we can have a...

Has anyone been to Bath Rheumatology?

rheumatology for an assessment of EDs? I hope to soon be seeing someone there for an assessment and...

Advice for a Hypermobility sufferer

ever post on here, and believe it or not my first ever post in a forum seeking advice. I have had...