It’s a while since I’ve been on this forum, I was diagnosed in 2017 and started tamoxifen in 2018 after chemo. All was ok until last year when I started to get some abnormal bleeding which I immediately informed my GP of and had was referred to gynae each time this happened for a hysteroscopy. All of the hysteroscopy’s included a biopsy to check for cancer and all were clear so I could cope with the bleeds until last week. I literally lost so much blood I needed 3 units of blood in a transfusion (I collapsed 3 times in 1 hour and ended up in resus). I have now been told to stop tamoxifen (cannot believe taking tamoxifen was so dangerous for me] and I now need full hysterectomy.
I am really concerned about how I’ll be after the hysterectomy as tamoxifen really gave me mood swings and obviously if it the hysterectomy makes things worse I cannot have HRT. Just wondering if anyone has had a similar experience and how they feel now they have had the hysterectomy eg how it feels day to day and is sex ok? Also do you still need to take tamoxifen as I’d be very scared to start taking it again.
Hi I’m sorry you didn’t get an answer to your post . I had a hysterectomy following changes caused by tamoxifen . I had ovaries removed too . I’m not sure what type of surgery you are having but I think some are a lot less invasive than others .
after the op I was given the choice to go back on Tamoxifen , take Letrozole or take nothing . As my original cancer was very small and I had my ovaries removed the oncologist was happy for me to not take any hormone therapy and so I decided not to.
The menopausal symptoms after the op were no worse than when I was taking Tamoxifen in-fact my thinning hair grew back .
Good luck with your op .
I’m so sorry to hear you need to have a hysterectomy - I completely understand how distressing that must have been, the need for another operation and everything that led up to it and its consequences. I can’t compare pre and post tamoxifen as I had my hysterectomy before my breast cancer was diagnosed.
I had, like you, prolonged abnormal bleeding (flooding with large clots) which didn’t abate and also resulted in my becoming very anaemic. I needed to take iron supplements (ferrous fumarate) for 3 months to restore my blood levels before the op (but they can also transfuse during if necessary). I had long standing fibroids and also an ovarian cyst (thankfully benign). My gynaecologist told me he could monitor things, but at 56 with a family history of breast cancer, I opted for TAH/BSO. As I’m sure you know, there are many different types of hysterectomy which differ in their invasiveness and healing time. To get the cyst out intact I had a midline incision which meant it was major surgery. I was however home in 3 days and started going out for walks next day, no lifting for 6 weeks and it took around 3 months for full internal recovery. Hopefully you’ll be able to have keyhole surgery, but if not you will get through it.
After clear post op path and clear mammograms, I was advised I could take estrogen which I did for a year, before unfortunately finding my breast lump… Thankfully caught early and I’m now on anastrazole post surgery and RT. So my experience includes a horribly long peri-menopause with every symptom in the book, surgical menopause, HRT and now HT. I have to say that once I’d healed from my hysterectomy I felt 100x better than before when my oestrogen levels were fluctuating all over the place. The main benefit of my brief spell on HRT was getting a full night’s sleep. I had mood swings during peri-menopause but have not suffered (or my husband hasn’t…) these since. Sex was a tiny bit sore at first but then fine (there are plenty of good lubricants but they’re not always necessary…), it is a bit different and takes a while to settle but everything is still in good working order! One of the key things is getting into a routine to keep up the pelvic floor exercises.
Post op HT will likely depend on how long you were due to take HT (5 or 10 years?) and whether you keep your ovaries or not. Postmenopausal women are usually prescribed aromatase inhibitors to prevent the enzyme aromatase converting androgens to oestrogen (primarily in fat cells, but also in other organs) whereas tamoxifen stops (primarily ovarian produced) oestrogen binding to breast cells and driving cancer growth. AIs are more effective than tamoxifen in post-menopausal women. They do produce many similar side effects, the most common ones being hot flushes/night sweats, headaches and joint/muscle aches. The majority of women are able to tolerate AIs, although sometimes it’s a case of trial and error to see which make suits best.
I hope all goes well with your hysterectomy and recovery, please do feel free to ask any more questions. x