Full hysterectomy following tamoxifen, anyone have experience?

Hi everyone,

I haven't been on for a while, feeling very up and down regarding my impending hysterectomy in just over 2 weeks time.

I'm 37, took tamoxifen for exactly 2 years, advised by gynecologist to come off it end of January due to a condition it caused called endometrial hyperplasia which is an over thickening of the uterus lining and also a cyst on left ovary, which altogether caused a pressure/bloating in my abdomen and stabbing pain to left.

It took quite a few tests to establish this is what it is and I'm now booked in for hysterectomy with left ovary going and I was hoping to keep my right one as far as they know it is perfectly fine but I had a pre op last week with gynecologist who has left it up to myself as to whether they take both ovaries, the prospect initially upset me as if I do then I will be in full menopause and I cant have HRT as my cancer was hormone fuelled.

Sorry to witter on but I guess I'm looking for any experiences you might be willing to share of my situation. I'm anxious about all the side effects of the menopause and having to do it cold turkey I suppose. There is nobody around me that has had to go through this so I am feeling a little lonely.

Oncology have specified a better breast outcome long term if i did have both removed and I have 8 more years of tamoxifen to face when I'm over op. Initially it sounds like a no brainer but quality of life does factor.

Thank you in advance xx

[squeezebox]

Hi Cazlav

I had endometrial ablation 6 months after starting Tamoxifen. Dudnt have a hysterectomy due to my manager refusing to pay me sick time.

Then I had cysts on both of my ovaries so I had both ovaries removed as some had changed but I was 50. Big difference.

I cannot tell you which way to go. Talk to docs about it and see what they suggest. I ring the secretaries and ask for best way to move forward with my problem. They're usually pretty good.

I have a friend who is having gynae problems from the drugs at the moment.

Wishing you all the best and sending lots of love. 💝💖💕

[Moirs1964]

Hi Cazlav, what an ordeal at your age. I had a full blown menopause due to chemo/drugs and I won’t lie it was hard but it will pass. I had to stop tamoxifen as it caused havoc in my body so I just have a yearly scan now to check everything. I chose quality of life over being miserable but I’m very vigilant about my scans etc.

Maybe there is a support group you could talk to and hear other opinions from women who have had similar experiences. It always helps to talk in person.

Good luck with everything 😊

[Debster2016]

Hi Cazlav I haven’t been through this but I appreciate your posting and send much love to you to help you through it.

Wishing yo7 well again soon xxxx🤗🤗🤗

[Janny1306]

Hi cazlav hope you're feeling more up now we have some sunshine. It must be hard for you to decide to keep one ovary or gofor the full hysterectomy.personally I wouldn't hesitate, I d like to think that the doctors know best ,but then I m 62 not 37! Might you want a child in the future? I can honestly say I,ve sailed through my menopause I,ve not had a period for 10 years and I love it!! I took tamoxifen and another inhibitor for 10 years the only thing I,be had trouble with is vaginal dryness but you can get non hormonal gels that help . I,ve been off tamoxifen for nearly 2 years now and just have an annual check up and 3yearly mammograms . Whatever you decide I wish you a happy healthy future x Jan

[Hidden]

Thank you all for your replies and well wishes. I'm going to have both ovaries removed and eliminate the future risk.

[RuthJ]

Hi I’m 49 and have hormone positive bc I was on tamoxifen but I seemed to have every side effect on the warnings so came off it and have had both ovaries and tubes removed so I could switch to anastrazole. Op was 12th April and so far so good no horrible hot flushes started the anastrazole a week ago can feel the odd stiffness in my joints but so far so good. Good luck and rest well after your op xx