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Weaning off HRT

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PurpleStar Tue 04-May-21 23:21:16

Hello.Im looking for others experience of surgical menopause and then having to go on HRT,and then how to wean off HRT.I had a huge tumour on my left ovary in 2012(aged 42)resulting in left Ovary,tumour and twisted fallopian tubes being removed.As that one was faulty I was told my right Ovary would take over the hormone production.I never felt right and had hot flushes,but they were manageable.Then things escalated in 2016 when I'd been getting stabbing pains and had very few periods,I assumed I was entering full menopause despite being 46.A routine spine scan showed up another tumour on my right Ovary.Again under an Oncologist due to the unusual form of the tumour(the last one was odd too but not cancerous so I wasn't too worried) then urgent removal of the beast.Abdominal surgery takes a bit of getting over so I was dreading it.Anyways,tumour removed,no Ovaries left and I was 46.There is breast cancer in the family and as I was classed as young and to help prevent Osteoporosis, I was advised to go on HRT until the age of 52.I had to go cold turkey for the 6 week recovery period and despite the consultants warning,I was not prepared for "surgical menopause" I would wake up gasping for breath,like I'd been locked in a car on a boiling hot day,I had irrational thoughts,hair loss,lack of concentration etc.So after the 6 weeks and all given the all clear,I was able to get a prescription and signed off by the Oncology,Gynecology consultant and have not seen anyone since and just get my monthly prescription no questions asked.I am on a low dose,the doc said I was worth trying a low dose to see how I felt,I never went back and put up with the "normal" hot flushes,vaginal changes,lower sex drive etc for the last 5 years in the hope that when I come off the HRT I won't suffer too much.I can find very little help for post surgical menopause.I was fortunate to have completed my family before my Ovaries malfunctioned and also that my high sex drive husband is very understanding! Thankyou to anyone who has any advice....

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Humbertbear Wed 05-May-21 07:28:10

I’m afraid my experience is that whenever you come off the HRT you will go back to suffering the menopause. I was on HRT for 10 years after a hysterectomy. My GP then said he could no longer prescribe in accordance advice at the time. I went straight into having hot flushes and not sleeping and it all took years to fade away.

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PurpleStar Wed 05-May-21 08:43:55

My DM was on HRT for years and still has hot flushes.I never wanted to go on it but the surgery left me no choice.Us women go through so much,its so unfair.Im thinking of booking in to a well woman's clinic and speaking to an expert.Thankyou for responding Humbertbear.None of my friends or family have a story like mine so can give no advice...

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Sunnysideup Wed 05-May-21 17:37:01

Hi Purplestar, my advice would be to post on the Menopause Matters forum. There is a wealth of information on the site and some very well informed ladies who I’m sure would be able to help you.

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PurpleStar Thu 06-May-21 11:36:40

Thankyou sunnysideup,I will take a look...

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Newbarnowl Mon 27-Sep-21 16:34:23

Hello Purple star , (I'm new on here ) I too had my ovaries removed when I was 57 due to a twisted ovary ( caused by cyst ) I was postmenopausal and totally unprepared for the awful symptoms that followed ( had no warnings from the hospital ) I would wake up after one or two hours with a massive jolt , as if someone had electrocuted me and my thoughts spiralled out of control , it was alot worse than normal menopause. After 3 months I got on hrt and feel better although still struggling with some symptoms , and think it's about trying to balance the hormones. I would imagine if you taper off them slowly the symptoms may not be as bad. I intend to stay on them because I think it's only replacing and not adding on top of our own hormones as we no longer make them . Would it be worth having genetic testing to see if you are more susceptible to breast cancer as it's in the family ?

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marsk61 Wed 20-Oct-21 01:08:54

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Framilode Wed 20-Oct-21 09:29:29

I wouldn't come off it. There is a small increase in risk for breast cancer but HRT offers protection against other conditions as well as osteoporosis. As you have found out it increases your sense of well being. I have been on it for over 30 years and intend to continue for the rest of my life.

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Lilydrop Wed 20-Oct-21 10:47:47

I wouldnt come off either. I wish I had stayed on it. I met an elderly lady who was in her late 70s she said she would never stop taking HRT.

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Esspee Wed 20-Oct-21 22:00:14

32 years ago my surgeon inserted an oestrogen pellet before stitching me up. By the next day I felt wonderful, better than I had done in a couple of years. (sore but happy) I have been on oestrogen implants since then. Every six months a tiny pellet of oestrogen is inserted under my skin and for the other 363 days of the year I don't think about it. I choose not to go through the menopause - ever.

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Mancjules Wed 20-Oct-21 22:47:30

I'm 65 and tried to come off HRT 5 years ago. Failed miserably. I had a hysterical ectomy at 40. I'm staying on it but do have to chat to my GP yearly to discuss!

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Esspee Thu 21-Oct-21 08:46:12

Mancjules. What a wonderful word you (or your predictive text) have come up with. HYSTERICALECTOMY, absolutely brilliant. ???

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marsk61 Wed 24-Nov-21 08:29:01

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