How do you feel about HRT and endometrios... - Endometriosis UK

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How do you feel about HRT and endometriosis after ovary removal?

Bettyheslop profile image
13 Replies

Hi all, I am 41 and have had severe endometriosis since I was a teenager. 4 years ago I had a hysterectomy and endometriosis excision but kept one ovary. Everything was great for ages, still is really, I'm in 90% less pain but now I have a large endometrioma cyst on my remaining ovary which I'm having removed in 2 weeks and my ovary is going with it.

I've decided to give HRT a try and I just wondered how others get on with it? I know it's a hormone and could stimulate my endometriosis but I don't feel ready for full on menopause with nothing. It was be nice to hear anyone's experiences.

Thank you

13 Replies
Brambledoggy profile image
Brambledoggy

All I can say is get some very, very good advice and do lots of homework. I’ve been toying with HRT for years and done years of soul searching. I decided not to, but then I never had a hysterectomy so you’re in a different boat I guess. Go to menopause matters and join their blog, lots of ladies regretting their HRT decisions due to endo resurfacing sometimes after years of dormancy. It’s so flipping hard to know what to do. I’m 49, peri menopausal with over 30 symptoms of impending menopause and plummeting oestrogen levels, plus the double whammy of severe pain which is very erratic. I just don’t trust hormone therapy, I’m too scared of long term implications and for what it’s worth, there simply is not enough research, studies, clinical trials to make an informed decision. So on I suffer. I do the anti inflammatory diet and exercise daily when pain permits. But I can’t say I’m happy. Just waiting for the day my periods dry up, my eggs have had enough and I can get my life back again. I would really welcome any other “peri menopausal with endo” ladies opinions. I feel we are totally left out of the bigger HRT picture. Nina.

Bettyheslop profile image
Bettyheslop in reply to Brambledoggy

Thanks for sharing with me Nina. Yes I agree. There is a lot of info out there about HRT but not really in connection with endometriosis. I will have a look at menopause matters. Seems like these is a lot of pros and cons whatever we do.

TOC2 profile image
TOC2

Hi Betty - personal I'd give it a go. I ve suffered with Endo for most half of my life. I was told in my younger years it was IBS , till I found a fab consultant. I had stage 4 endo removed 3 times. And I am actually just back from a hospital app. today as I think its back again. With Endo. its such a personal journey. you have to do what is right for you. good luck with whatever you decided x

Bettyheslop profile image
Bettyheslop in reply to TOC2

Thank you TOC2, I really am leaning towards giving it a go. I have/ had stage 4 endometriosis too. When I had hysterectomy they did a good job of removing it and my symptoms eased dramatically, just hope it stays that way for at least a few more years.

Lindle profile image
Lindle

It will take some months for the oestrogen to be out of your system and for your post menopausal levels to stabilise. So you might want to wait a while before deciding. Excess weight contributes to post menopausal oestrogen levels so if you are overweight that may have some bearing on your optimum estrogen levels. I always think it is best to have an estradiol blood test before going on HRT.

HRT is given to any women on the basis of taking in at the minimum level for the minimum time. With a history of endo it is based on the 'threshold theory' basis so that levels are sufficient to maintain bones and give the other benefits we derive from oestrogen whilst not being high enough to stimulate endo. Everyone is so different though and the risk of recurrence is related to the stage of endo that pre-existed and whether it was thoroughly excised at the time of your oophorectomy. Presumably it is being done at an endo centre as large endometriomas are often associated with deep endo elsewhere, especially rectovaginal endo.

HRT in your situation must be either tibolone or combined oestrogen/progesterone even though you no longer have a uterus and it will be important to have regular oestradiol blood tests which are rarely offered.

Bettyheslop profile image
Bettyheslop in reply to Lindle

Thanks for your reply, no luckily I'm not overweight. Yes I expect there is deep endometriosis somewhere again. At the time of hysterectomy I was a total mess, everything stuck together, large endometrioma then too. Had my appendix out too as was stuck to ovary. Specialist did a good job though, before I was in constant unbearable pain and 4 years down the line I've rarely taken painkillers, it's like a different life. Only thing that causes pain now is the endometrioma.

I will ask about bloods tests and discuss which HRT I will have

pineapple profile image
pineapple

Sorry you've been through so much. Not sure if my story will help but I came on here looking for perimenopause + endo posts and yours was on the homepage - thanks so much for sharing. I have recently started HRT after being told I'm strongly in the menopause at 40 (so probs technically was in Premature Ovarian Insufficiency (POI) - they just give our conditions the nicest names don't they) after lots of doubt and being tied up with anxiety about it. I had most of my ovaries removed without my knowledge when I was 26 during surgery for huge endometriomas so I guess this is the consequence of that. For me, I was totally against HRT due to inherited beliefs about it. Then I went on the Menopause Doctor website (Dr Louise Newson), read her book and another mindblowing one called 'Oestrogen Matters' and realised my dire symptoms of however many years of undiagnosed perimenopause were caused by lack of/no oestrogen.

I am waiting to see what it does to my Stage 4 endo (had peritoneal excision in 2014 and surgeon removed all the endo he could - I'm not sure what's in there now). It's early days but I had no quality of life before HRT (no energy, deep depression, headache, brain fog, painful joints, dry mouth, all day hot flushes, bad palpitations, severe insomnia) and now I feel like me again, feel emotional just writing that! In a balance of risk I've made a very personal decision I know but just wanted to share and send my support - like life in perimenopause isn't hard enough without endo in the mix 😘 x

Bettyheslop profile image
Bettyheslop in reply to pineapple

Thanks for that message pineapple. It really does help to know that others are in a similar position. Lots of my friends were constantly telling me about their menopause and its not that I don't feel for them but non have endometriosis or ovaries removed so it's a very different thing.What HRT did you decide on? It is a balance risk isn't it? If it wasnt for the endo I wouldn't have been worried about taking it. I wouldn't have had my ovaries removed either though so can't think that way too much!

I'm sorry you have been suffering so much with menopause symptoms, it's definitely bad enough just having the endometriosis without menopause added! I would be interested to hear how you get on over next few weeks.

I had my surgery 11 weeks ago. There were loads more endometriosis adhesions that had built up since last surgery 4 years before. I had follow up appointment a few weeks ago and the consultant told me my surgery had been a nightmare and he was swearing all the way through it!

I really struggled with recovery this time. Couldn't go straight on HRT as blood pressure was too high. I'm on tablets for that now too!

My GP was happy to give me what I asked for really so I decided to try Tibolone. Started it 10 days ago, so far it's given me a few headaches and an upset tummy but it's starting to settle.

I just hope no more endometriosis. I'm scared of where it will all be if I get it back badly. At least before there were things to removed but I haven't got much of my insides left!

I have the added fun of an underactive thyroid so I'm worried about Tibolone affecting that too.

It was lovely to hear from you xx

pineapple profile image
pineapple in reply to Bettyheslop

Surgery is such a life-stopper and you've had so many decisions to make at a time when you just must need to recuperate and adjust to it all. Ah a swearing surgeon eh, try living with the tangle inside you mate, huh ;) Have you managed to find a menopause specialist? I'm on the waiting list and that's for a private one so am saving madly! Appreciate not everyone can access that and that in itself makes me angry there's not enough help and trustworthy, specialist advice available.

I watched this which changed my mind about HRT - the relief I felt at finding someone talking about endo and ovary removal as well as menopause: menopausedoctor.co.uk/menop...

My GP wanted me to have patches but after watching that video I chose the Oestrogel (still adjusting the pumps per day) and Utrogestan (a body identical progesterone rather than a synthetic progestogen) to protect my womb. Because of the adenomyosis I was told a while ago I'd need a hysterectomy but haven't had one yet. The progesterone has a sedative effect so have to take that in the evening 2 hours after eating - really messing with my night-time Netflix snacking BUT it takes me about 5 mins to fall asleep now rather than 2+hours. I would also consider testosterone depending on my hormone tests - a cream I would have to get privately. Keep us updated with the Tibolone and how you're doing, it really helps to not feel so alone so thank you 🙏

Emma x

Lou93 profile image
Lou93

Hi I’m 28 had total hysterectomy in January this year with ovary removal.

Was on zoladex and Hrt for 6 plus months then had surgery. Tablet form at first but then changed to gel as better protection my endo consultant said.

I’ve been ok with the hrt did have night sweats and still do sometimes but I’m doing ok better than being in pain and I will be on Hrt for years to come xx

Bettyheslop profile image
Bettyheslop in reply to Lou93

Are you on estrogen only gel? I was thinking gel at first but then went for Tibolone. I've not been on it long. Luckily for once my GP has been okay and said to try it but if I'm not happy we will go for something else.Yes I agree, not being in constant pain is amazing isn't it? Xx

Lou93 profile image
Lou93 in reply to Bettyheslop

I was on tibolone one first then went onto gel only ☺️that’s good then see how you get on with it xx

Bettyheslop profile image
Bettyheslop in reply to Lou93

Thanks Lou xx

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