What does having a hysterectomy mean to you? It’s something we vaguely hear about; someone’s mum had one, an aunt, a woman at work... they seem pretty common and straightforward, right? I suppose the fact that around fifty-five thousand women have this operation every year in the UK (according to the Hysterectomy Association) statistically it is common, but straightforward? Not always. Like most things in life, not all hysterectomies are the same; there are many reasons why a woman needs to have them, and there are different types. Will it involve just the removal of the womb? Will the cervix have to go? Will the ovaries be removed? Will it be keyhole or abdominal? And, crucially, what aftercare will there be to supplement or even fully replace the hormone-producing body parts that have been removed. You’d think that would be a given - if a man had to have both his testicles removed, he wouldn’t be sent home with a nod and expected to just crack on with things, would he?
Following my hysterectomy and the publication of my book, I’ve had many women approach me to tell me their story. Each one has been interesting and unique. But none have touched me as much as that of Sarah Tee.
Sarah was 52, fit, well and premenopausal. A scan revealed a fibroid on her womb, which she was advised should be removed. She was also told she would have to have her ovaries removed, even though she pleaded to keep them. In a rush of stress and fear, she agreed to be operated on immediately, and she underwent a full hysterectomy, including the removal of her ovaries. It was only afterwards that she discovered that her ovaries did not in fact have to be removed. HRT or any other after care wasn’t discussed, which meant Sarah fell head first into full surgical menopause with no back up.
Sarah says, “My wonderful, normal, very busy energetic life was cut dead in an instant. I suffered ‘cold turkey’ due to an abrupt loss of hormones.” Going back to her surgeon didn’t help, as according to Sarah, “He had no idea about the consequences of the operation he had performed, saying: ‘HRT is not my thing...’” Traumatised, Sarah visited a menopause specialist, who told her in their opinion she had been “unnecessarily castrated”. Because of her family history Sarah was told she should not take a full dose of HRT, which is what she needed, or for very long. She has since found she reacts badly to any form of it.
Sarah and her GP husband Mike took her surgeon to court as they felt she had been unjustly treated. During the legal case that followed Sarah‘s surgery, they were told that “a general body of gynaecologists would not think it necessary to tell women that by losing their ovaries they would not only be losing all their oestrogen but they would be losing their main source of testosterone, which would be kept in a natural menopause. Nor did they feel it necessary to tell women the consequences of the sudden total hormone loss and how it would affect their life”. The attitude was ‘well you will go through a natural menopause anyway so we might as well put you into a surgical menopause’ and this is something Sarah is desperate to change. Unless there is a good or life threatening reason to remove ovaries, why make a woman ill unnecessarily.
They both feel strongly that women aren’t always given the information and advice they need before undergoing a ‘common’ but complicated procedure with potentially life challenging after-effects, which is why they contacted This Girl Is On Fire. Sarah wants women to get all the information regarding ovary loss in order they might be able to make an informed choice as to whether to keep them or not.
Sarah says, “Many gynaecologists are ignorantly deciding women are better off without their ovaries because they don’t need them anymore as they have had their babies. They are arrogantly deciding what they will or won’t tell women about the consequences of their removal, especially if they are premenopausal.”
As a GP, Mike admits that his training had not prepared him for the effects of a surgical menopause: “I was not prepared for how catastrophic it would be and how many symptoms there were.” As a husband, he was devastated. “I was distraught at how ill Sarah was made by the removal of her ovaries. Not only was the removal of Sarah’s ovaries unnecessary, but the whole hysterectomy could have been avoided as there were non-surgical alternatives that we were never told about. I needed to take three months off work to look after her and what I witnessed was barbaric. It was distressing to watch Sarah suffer five months of side effects in a desperate attempt to try and take HRT and see how devastated she was when the intolerable side effects forced her to stop it.”
So what changes would Mike as a GP like to see? “More training for doctors about hysterectomies and the effects of surgical menopause. Surgical menopause is completely different to natural menopause and occurs when the ovaries are removed from a premenopausal woman. The effects of surgical menopause are instant and far more severe than natural menopause symptoms due to the sudden loss of hormones. The body crashes and it undergoes abrupt withdrawal symptoms. Unless a woman can take HRT the symptoms are sudden and catastrophic. The body equilibrium is destroyed and women often feel as though they have ‘lost their soul’”.
“When ovaries are removed, the adrenal glands which are functionally connected to the ovaries, go into ‘overdrive’ to try and compensate for the sudden hormone loss thus produces masses of adrenaline which causes anxiety, panic attacks, shakes and palpitations. In surgical menopause a woman loses oestrogen, progesterone and very importantly testosterone, which is vital for libido and energy. There is no licensed testosterone product for women on the NHS in this country. Most gynaecologists think all women can take HRT but some women cannot tolerate it. Many of them do not go back to their gynaecologist or GP to tell them, they simply suffer in silence”.
It is vital that anyone planning to have surgery where their ovaries are removed is given aftercare advice. According to NICE (National Institute for Health and Care Excellence) guidelines, “Women who are likely to experience a surgical or medical menopause should receive support and information beforehand and be offered a referral to a healthcare professional with expertise in the menopause.” It advises that doctors need to give information to menopausal women about available treatments for menopausal symptoms: hormonal, non-hormonal and non-pharmaceutical.
Sadly, in some cases that information is not always volunteered.
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