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HRT after total hysterectomy (endometriosis)

(24 Posts)
yoohooitsme Wed 11-Jan-17 19:02:46

Hi, I have name changed recently but am a regular poster.

I had a total hysterectomy including tubes and ovaries for large suspicious ovarian mass last week.

It seemed to be the sensible option, I was already on HRT and not planning further children.

However although it is thought endometriosis is a likely diagnosis the 'mass' has yet to be formally identified, there is a possibility of cancer cells and until this is complete HRT has to wait. Meanwhile hot flushes and night sweats abound.

I have two questions if anyone can help

1 - My skin on my face has suddenly dried up today what can I do to really help it long term (vain question) presume this is hormone related - is it just a case of moisturiser or are there any more systematic solutions?
2- The ovarian mass could have been a manifestation of undiagnosed endometriosis, if so my plan of oestrogen only hrt is out the window isn't it as there may still be womb tissue in me? Has anyone experienced similar - what happened about HRT please?

Karen333 Wed 01-Feb-17 22:05:08

Hi, I had a total hyst and also have Endo and I am unsure about HRT.

On the one hand it is advised that you do take it to protect bones but oestrogen can make Endo grow. It's a nightmare! I have several friends in the same situation and they don't take HRT.

Have you made any decisions yet??

Also, I hope the mass they found is nothing serious. I had a mass the size of a golf ball removed but it turned out to be scar tissue and stuff from the outside of my bowel, yuk. So it may not be anything to worry about x

Maidofdishonour Wed 01-Feb-17 22:18:11

Hi, I haven't had a hysterectomy but I have endured 30 years of endometriosis. I am now enjoying the delights of the menopause and was also wondering whether I could consider HRT. I have always been led to believe that it could aggravate any remaining endo. Is this still the current thinking?

Karen333 Wed 01-Feb-17 22:22:05

Hi, as far as I know that is still the current thinking but I can't stand the flushes much longer!

Maidofdishonour Wed 01-Feb-17 22:26:28

How long have you been getting the flushes and when and where do you get them? I have had two drug-induced menopauses which were fine but the real thing seems a long protracted affair. My flushes were controllable in winter (open window or go outside and instantly freeze nuts off). I am more concerned with anxiety issues, aches and pains and palpitations.

PollyPerky Thu 02-Feb-17 08:19:05

I think you have to try it and see, to be honest.
You could try Tibolone which is a special type of HRT and the oestrogen doesn't stimulate the uterine lining. But as for endo, I don't know.
I know it's not a direct comparison but I've a fibroid which hasn't changed on 8 years of HRT.

yoohooitsme Fri 17-Feb-17 12:01:37

As my diagnoses turned out to be ovarian cancer the HRT is definitely off the cards and I start Chemotherapy soon.

I am managing with the night sweats mostly, I have found that shoulder or scalp massage in the evenings helps (thanks to DH) maybe because I am more relaxed that way. Keeping warm and waring full length pyjamas with long sleeves bizarrely helps too, maybe because I don't instantly freeze after a night sweat wakes me up, so I am sleeping a bit better.

Oddly I tend to have a massive hot flush going from upright to lying down every night!

I read the alternative suggestions pdf through lots of times and once I am confident I am over the hysterectomy (and if the chemo lets me) will be trying yoga or more likely regular pilates as I like that better. I'll try to report back if that helps with the flushes and sweats when I get into it.

I doubt i'll try an alternative drug for the menopause symptoms unless they become more unbearable than the other stuff as I will have enough drugs floating round my system for the time being.

PollyPerky Fri 17-Feb-17 14:58:52

Really sorry to hear about your diagnosis.

Have you been told categorically that HRT is not on for you?

Here it says it may be okay.

You could also try Ovacome (charity) for specialist support and info.

yoohooitsme Fri 17-Feb-17 19:33:19

Thank you for replying, yes the oncologist was quite specific on the no hrt for me and suggested I discuss alternatives with my gp. The gp practice is going through some changes and there isn;t an obvious person to see at the moment.

clogher Fri 17-Feb-17 19:46:28

I had a total hysterectomy because of endo and recurring cysts. I was advised to go "cold turkey" and see how it went. So far it's manageable - 9 months on. Like you I have a rush of heat when I lie down at night but that passes. I wake up overheated once or twice a night but it is not a big problem. If I have more sugar than normal then these symptoms are worse, there is a definite link IMO. Glass of wine is fine, bottle is too much.

Skin is drier, I use Bio oil maybe every second night.

I am happier to not risk endo by any HRT

raeray Fri 17-Feb-17 20:05:55

Sorry to hear the hard time you're having.
I had a hysterectomy a year ago for womb cancer and although I didn't need treatment further than the op I have been allowed to use HRT even though it was a hormone driven cancer.
I did however get a referral to a specialist menopause clinic at the hospital so had the experts opinion hormone wise.
My GP is quite adamant that it should be expert opinion for HRT post cancer so maybe you could see if you could get a referral to a similar service?
Good luck with everything and if I can help at all being a bit further on in the process, feel free to message me.

TheCustomaryMethod Fri 17-Feb-17 20:15:13

I had a total hysterectomy last year for endometriosis, fibroids and adenomyosis. I'm not on HRT (yet) - I'm terrified of the oestrogen stimulating a return of the endo. At the moment, my hot flushes are manageable, and bizarrely, the condition of my skin and hair has significantly improved since the operation. My GP would be happy to prescribe HRT - but I don't want to upset the situation when I am feeling so much better - pain free for the first time in years - so I am keeping an open mind. I'm taking supplements to try to minimise the risks of not being on HRT.
I too would be really interested to hear others' experiences and opinions.

yoohooitsme Fri 17-Feb-17 21:52:27

oh I am encouraged to hear I may not be imagining the lie down = hot flush thing at least, and to hear that some of you are managing without the hrt.

My skin is dry but also spot free so thats a real bonus anyhow and about time (age 45!).

is it calcium and vit d supplements that is recommended?

I'll ask about a specialist meno clinic maybe, I spend so much time at the moment in healthcare settings I am struggling to opt in to anything I can avoid/dismiss .. especially after finding the opticians too intrusive last week grin (incidentally my glasses prescription hadn't changed and maybe my perception of my declining eye sight could be helped by better sleep he said - yes yes I wish, though i have slept a bit better this week and indeed life seems less blurry!)

I am having (shh) some vulval pain and inflammation and I'm not sure if this is menopause related (its not thrush or an infection - have been treated for both), maybe catheter or antibiotic or surgery related too or even an allergy but I DO SO WISH it would go away. Gyneae nurse has been lovely about this but I'm not good at long detailed phone conversations about this subject hmm

weebarra Fri 17-Feb-17 22:02:15

I had breast cancer three years ago and then found I was BRCA2 positive, so had my tubes and ovaries removed - with the result of instant menopause. Not fun.
I was referred to the specialist meno clinic and was prescribed citalopram which is an anti-anxiety drug, but has pretty much stopped my debilitating flushes!
I also take calcium and vitD and have a yearly dexa scan to check my bones - I'm only 38.
The worst symptom is the vaginal atrophy to be honest, and there's not a lot to be done about that.

TheCustomaryMethod Fri 17-Feb-17 22:04:30

I was recommended 1000mg of vitamin D daily, and either to consume the equivalent of a pint of milk, or take a calcium supplement. FWIW I'm also taking 'Menopace' multi-vitamins.

My hot flushes are worst when I first wake up. Alcohol and spicy food will trigger them without fail. Other than that, I'm only getting one or two during the day, and they're very brief. I have yet to experience summer in meno, though!

PollyPerky Sat 18-Feb-17 08:18:38

It depends how bad your symptoms are OP.
I agree that you ought to see a meno consultant who can work with your oncologist and not 'just' a GP. My own consultant told me they (personally) are treating women with HRT who have had breast cancer, in agreement with the oncologist.

I never thought I had endo but as I've had many pelvic scans, some adenomyosis scarring was found on one scan which for me seemed to 'give a name' to the period pains I used to have as a teen. (feeling sick, faint, pains down thighs and diarrhea.) I have had some of this VERY occasionally on sequential HRT (been on it 8 years) but not enough to make me want to stop.

yoohoo My hot flushes were worst the minute I got into bed- from sitting up to lying down. I was then enable to sleep due to a) heat and b) insomnia. This was mainly why I used HRT.

Supplements- calcium and Vit D alone are not enough to stop osteoporosis. They help but they are not preventative in themselves. There is also a lot of concern recently about the link between calcium supplements and heart disease. (They think the calcium taken in large amounts rather than gradually through diet may cause arterial hardening and blockages.) You need to try to get more calcium through your diet and do weight bearing exercise / resistance exercises with weights.

PollyPerky Sat 18-Feb-17 08:20:27

weebarra you should still be able to use vaginal estrogen even though you have had breast cancer. If you've been told you can't, you should seek another opinion from a specialist (menopause) - there are a handful of great drs in the UK who are really on the ball with this stuff but unfortunately, many women's experiences here show they aren't getting the best advice.

weebarra Sat 18-Feb-17 09:12:43

polly - the menopause clinic consulted with my oncologist who aid she was uncomfortable with the use of topical oestrogen.
If I were on tamoxifen, it would be fine, but as a young post-menopausal woman, recurrence rate is lower with another type of drug called an aromatase inhibitor. Tamoxifen stops oestrogen from reaching the cancer cells. Exemestane (my drug) stops the production of oestrogen from any part of the body. Therefore, if I introduce oestrogen into the body, there's nothing to stop it 'feeding' the cancer cells. My cancer has a 50% 5 year survival rate, so I'm quite happy to have painful sex (!) and still be here.
Apologies for hijacking - just wanted to explain that in some situations HRT really isn't an option. I wish it were!

PollyPerky Sat 18-Feb-17 09:34:39

weebarra In your circs I'd consultant a top expert like Panay at the Chelsea and Westminster. There is a lot of evidence online etc ( research ) which shows there is no absorption from vaginal HRT and therefore it can be used by women who have had BC. Here is some research.


PollyPerky Sat 18-Feb-17 09:34:55

weebarra Sat 18-Feb-17 10:54:21

Cheers Polly, that's massively useful. I will read it. The sex thing does get me down, I'm only 39 now and that's just too young for no sex! Don't suppose you know any Scottish specialists?!

PollyPerky Sat 18-Feb-17 12:12:54

The best person to try may well be Dr Heather Currie who is current chairperson of the British Menopause Society and runs the website Menopause Matters. She's in Scotland. If she can't help as it's a really 'specialist' topic for you, I am sure she'd help refer you to someone who can.

yoohooitsme Sat 18-Feb-17 12:26:58

I hadn't heard of adenomyosis but the symptoms sound familiar.

I am testing out the YooHoo anti-flush technique of lying down in stages over a couple of minutes (rather than collapsing on the bed) at night to see if I can beat that first hot flush of the night, last night it was actually successful - could be a fluke.

Off to look for youtube pilates so I can start on that too. Have to get through one round of chemo to see how I cope before they decide if I can work through the rest of the treatment so here goes, need to be in the best condition I can be. Would so love to go back to work.

PollyPerky Sat 18-Feb-17 15:10:22

yoo I can recommend a good book on meno- Your Change, Your Choice written by a consultant, which is 50% conventional treatment (HRT etc) and 50% alternatives. Well worth a read.

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