Endometriosis and breast cancer medical gaslighting
For years I had crippling periods, the pain was intolerable, finally I was diagnosed with endometriosis, but for years dismissed and not given any effective pain relief. I made lifestyle changes, had Acpuncture and ultimately gave up work.
Then I was diagnosed with breast cancer at 45, I was not in menopause, there are too many horrible things that happened. I was put on zoladex and tamoxifen and immediately told I may have menopausal symptoms. It was unbearable, my weight plummeted a stone and a half, I had hot sweats, then shivering cold that were like fever, so many other symptoms, I immediately had urgency incontinence, which I was repeatedly told was not because of the drugs, it is now acknowledged in medical research that these drugs can cause incontinence . There were so many other things that were just so difficult with the symptoms and doctors .
I was treated as hysterical and told to eat more, to put on weight. I came off the drugs after 6 months as I could not function and my weight kept dropping- I was slim to start. Ultimately I private treatment after that only because my parents paid for it. My periods never came back after only 6 months on these drugs.
For the cancer I was told I had to have a marker clip in my breast lump, no proper informed consent. I was not told I had to have a mammogram straight after, which I find incredibly painful due to being slim with small breasts.
Basically it’s a huge long needed inserted into the your breast that the doctor uses to put metal marker clip put in the lump. The doctor could not get the clip the lump and I was lying on the table with her pounding on the end the of this huge needle that was inside in my breast trying to get the clip in the lump, literally thumping the end of it. It was so brutal, then I was told you have to have a mammogram, straight away, which she did not tell me before the procedure. I said no and totally overridden, I was so shocked and distraught by the pounding on my breast and the whole episode . I came home and just lay on the floor crying.
I was diagnosed bc again in 2020. Again symptoms of Letrazol are described as “menopausal”. This drives me crazy, these cancer drugs strip your body oestrogen, it is not the menopause. While in menopause oestrogen drops off significantly It is not totally shut off overnight. Those of us these drugs have less oestrogen than a 90 year old woman and again I find my reported side effects are dismissed, ignored and not properly reported on my medical notes.
Breast cancer oestrogen deprivation must stop being called “ menopause” the gaslighting of women on the medication, the dismissive attitude about side effects especially longterm, in bone health, heart heath, sugar metabolism etc was not discussed with me at all. I am at the same hospital and I find it hard to trust the doctors. This is not informed consent.
my weight has ballooned for the first time in my life, I can not shift it, no matter what. Looking at the medical research, these drugs interfere with sugar metabolism and can make you insulin resistant. Again the oncology department just don’t want to know. I am now on weight loss injections. I have intense joint pain, and migraines that are so bad I can not function when I have them. The gaslighting of the doctors makes it so hard to deal with.
what I want to see is total oestrogen deprivation named properly and differentiated from normal menopause. Women are being gaslighted, I don’t really have any option, but to take Letrazol now, but if I had been given full information on the drugs, had my side effects taken seriously and felt my doctors were onside, it would make life so much easier.
I am on a Facebook pages for women on aromatase inhibitors ( Letrazol etc ) and the experience is so similar for many women. I am finding more help and support there about side effects and how to manage them, than the hospital.
total oestrogen deprivation needs to be named for what it is! Doctors stop calling it “menopause “ and take our side effects seriously