Surgical menopause without HRT

I have just heard that my tumours are weakly positive for oestrogen receptivity which means I can't have HRT. I had my operation in October and my menopause systems are awful (hot flushes, terrible mood swings and weepiness, night sweats etc). They are so debilitating that I have not been able to return to work. I was putting my faith in having HRT and that it would solve all my problems. As my tumours are borderline I just wasn't expecting them to be oestrogen receptive and it has hit me very hard. So now I guess I just need to suck it up. What can I do to help myself? Natural remedies? Other ideas? I do exercise....Thanks, ladies.

18 Replies

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  • I couldn't have HRT either. The symptoms were hellish to start with. Will you be having chemo?

    Although I only had one session of chemo it did alleviate the symptoms. Except for night sweats, which I still get sometimes after three years.

    Red clover and black cohosh are the natural remedies that I was recommended. My poor hubby spent nights shivering while I was under a fan with the windows open in December lol

    LA

  • hi. give acupuncture a try, I had a course of 6 and although it didn't stop the flushes and night time sweats it certainly relieved the intensity Pam x

  • Hi I went through very similar exper in months following my op . Caused more problems than chemo. I tried acupuncture and sage tablets but to be honest it just improved with time. I took a sleeping tablet to get me through the worst of it and really helped .I'm 18 months from hysterectomy now but have been fine symptom wise for last 8 months or so . My onc wanted me to take hrt but didn't want to risk it ,although my cancer came back anyway . Didn't realise they could check your tumors for eostrogen receptors - v interesting. Hope you get some relief soon

  • Thank you. I have ordered a chillow as the evenings and nights are some much worse. Each one wipes me out and makes me feel drained - several times a day and through the night. My consultant just doesn't seem to understand how debilitating it is along with the mood swings (from grumpy to weepy - they never seem to 'swing' to anywhere more favourable than that!) I have my next scan on Jan 13 and am not looking forwards to that.

    Susan3 the test results say 'ER status: weakly positive (Quick Allred score = 3/8)' So that's the test I had done...

  • Hi. I was going to recommend the chillow pillow but I see Claire beat me too it. Its a great help at nights ! loved mine ! The symptoms do subside but I think I got off lightly compared to what you are describing. Hope you feel better soon . Kathy xx

  • Looking for something else, I came across the links below mentioning hot flushes ( from the American website) which I passed on to a friend.

    I'm now taking this stuff and whether it's down to that or to something else, I've been really surprised at how well I've felt through cycle one of my fourth chemo in 6 years.

    Hoping it's of interest and things improve for you soon. xx

    inspire.com/groups/ovarian-...

    "Siberian ginseng, also called eleuthero, is good for boosting energy dramatically. I used it for many years. It takes a month or two for you to feel the effects, but then it's pretty steady energy. It's available in capsule form, as well as tea. I have arthritis and fibromyalgia and it helped both conditions. Because I have to take warfarin for blood clots, I had to stop using eleuthero, and I do miss it. During what must have been the world's longest menopause, I used it to help with hot flashes, and it almost completely eliminated them. If you have elevated blood pressure, it might cause problems, so be aware of that, too."

    inspire.com/groups/ovarian-...

    inspire.com/groups/ovarian-...

  • Hi Uniqueone

    I had the surgically induced menopause 18months ago. Initiall I wasn't sleeping at all, the tearfulness was terrible and the sweats made me strip the bed daily. Now thought the tearfulness has gone and I was advised by my district nurse that that is a very common side effect of the general anaesthetic, I occaisionally sweat and have insomnia a couple of nights a week, but think that if I eat well and don't have a glass of wine I sleep better. In essence it seems to be easing off without the need for HRT. I think that my mind was very overactive post op and I was keeping my adrenaline levels up and worrying pointlessly. A friend takes black cohosh and St. John's wort. Maybe worth a try?

    It is very soon to return to work anyway. I hope things improve soon for you.

    X

    Esther

  • Hi, read up on the Lady Magnet, sold by Amazon and Boots about £36. I first heard about it from an article on Brenda Carlise the singer who found it excellent for her hot flushes.

    I bought one 18 months ago for palipations, flushes, legs burning after I had a bowel blockage/ twist, never found out what happened. I solved most of it after a week or two, once my body got used to it. I still wear it now.

    It does not work for all but if you read the reviews on Amazon even nurses have been amazed. They have a very good customer service who will explain how it works.

  • I suffered really badly for over two years pouring with sweat all the time and burning up I tried everything from sage tablets chillow lady care magnet etc fluoxetine & venlafaxine in the end I went to the menopause clinic and the consultant agreed I couldn't carry on like this (I felt I had no quality of life ) he wrote to my oncology team and they agreed I could be prescribed hrt it changed my life within a week ! My nails are still awful and I'm still fat two years after chemo finished but at least im not constantly dripping I just get warm now occasionally xx

  • Thanks - good to know. I am going to try to see a menopause specialist and discuss it with them. Any recommendations? I'm in Surrey....

    At the moment I feel I can't go on like this - it's awful. Just had another night of little or no sleep, but lovely to 'wake up' to a bunch of supportive replies from you all. Obviously though the smallest amount of sympathy makes me cry...again..

  • Hi, i suffered quite badly too from menopause symptoms. I'm not on HRT. A GP friend told me to avoid all caffeine. I drink decaffeinated green tea it took a bit of getting used to but I much prefer it now. Give it a try. Hope you feel better soon. Ann x

  • Have you seen this site: menopausematters.co.uk? It's run by a doctor who specialises on the menopause and there's lots of information. I had a similar problem - there's a raft of drugs your GP can prescribe that can help, along with the suggestions above. I'd be cautious about the use of herbal remedies, specifically phyto oestrogens, which mimic oestrogen so might be unwise with your diagnosis.

    Beyond that, I can only say that it does pass, and that the chances are that one of the medical treatments will probably help. Best, Vx

  • I have been put on letrozole it's part of a group of medicines called aromatase inhibitors and they block the oestrogen production in your ovaries they are usually used for breast cancer to keep tumours at bay but it can be used also in ovarian cancer patients they also ease the effect in post menopausal women and they also monitored by the doctor hope this helps as my ovaries are oestrogen receptive but they have help wish you the best of luck finding an answer

  • I also failed to add that at first the night sweats were so bad at first so now I have the double bed to myself and hubby is in spare room which works well and we can both sleep well I also have epilepsy which also causes night sweats and the doctor has given me antidepressants to help all the best

  • After my surgical oopherectomy I had dreadful side effects. Taking Tamoxifen also caused me grief. I was told Evening Primrose Oil would help but it didn't touch it. I went back to my consultant and was prescribed Provera which I have taken ever since - for the last 18 years. My cancer was oestrogen-fed and, I believe, Provera is a progesterone HRT. I still take it as I take Letrosole -again something agreed with my consultant, as I am a BRCA2 carrier and still high risk. It's proved my salvation.

  • Thank you. I am going to my GP today to ask for a referral to a menopause specialist. I will discuss all your ideas with them. It is such a lift to know you are not alone and someone out there cares enough to respond and support (in fact several of you). So thanks all

  • Hi there, I completely understand your situation, after having a large Granulosar Cell Tumour removed along with the remaining ovary I went into surgical menopause with a vengence. The first consultant I saw in clinic (female) told me given the type of cancer there was absolutely no chance of HRT and I would have to put up with it. So I tried my GP and saw a very helpful locum who although did not understand my type of cancer said she could help by prescribing Clonidine and advised me to try Evening Primrose Oil, these helped a little. At my next clinic I saw the senior male consultant who was very sympathetic and said that although it would not normally be advised, given the severity of my symptoms and the fact my quality of life was so affected he could give me a low dose estrogen only patch. This improved things radically, I have to have a blood test 2 weeks before each clinic so have to stop the patches 2 weeks prior to that, but it is a small price to pay (I slap a patch on straight after the blood is drawn!) Everyone is different and what works for some does not for others, it can also depend on your medical team and how helpful they are or not. I do hope you can find some avenue of relief and please know that you are not alone. x x

  • Kikarne thanks so much for replying. I went to my GP yesterday and she said I could have Clonidine but as I have BP on the low side of normal she said it might not be ideal. She also suggested I take Prozac after I had cried copiously in her surgery...

    I am not at all keen to take anti depressants. I know why I feel so miserable, I am worried about my tumours coming back and I have horrible sudden onset distressing menopause symptoms. It's situational. So today I put my jeans on (I've been living in leggings due to healing abdominal incision), I bought some menopause vitamins and some calming tea, booked a hair cut ordered a chillow and had a stern word with myself. I am going to try that.

    I am also wondering if, like you I can have a small amount of HRT. My tumours are borderline, and my consultant wrote in my letter telling me I couldn't have HRT that he was 'reluctant' to prescribe it. I am not sure if that is just dr-speak for he won't or whether he really means no...I will ask him, but I'm not seeing him till mid Jan

    Thanks for the support - this is just no fun at all....

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