Emma*, from South Devon, was 49 when her GP referred her to North Tees hospital following a suspect smear test. Emma was told that a polyp removed from her cervix contained an unusual form of cancer and it was recommended that she undergo a radical hysterectomy at James Cook Hospital, also under the management of the South Tees Hospital NHS Foundation Trust.
After carefully researching her options, Emma consented to robotic surgery to remove her uterus and cervix but leaving her ovaries, fallopian tubes and lymph nodes intact (a 'simple' hysterectomy). Robotic surgery was part of a hospital trial, but Emma was not told she did not have to take part in the trial. She also later discovered that representatives from the robotics company were present during her surgery, for which she did not give consent.
After the operation, the surgeon and his team told Emma that it had gone well and that she would probably take around six weeks to recover fully.
Several days after the operation, however, she received a call at home from the surgeon to say they had mistakenly removed her ovaries and fallopian tubes during surgery. He apologised for the error and recommended Emma seek help about HRT (hormone replacement therapy) but offered no advice about the potential impact of the 'rapid manifestation' of surgical menopause.
The clinical director of the hospital also contacted her acknowledging Emma had experienced a 'never event' that would be fully investigated. It appears that the surgeon knew about the mistake immediately after surgery when it was raised by a theatre nurse, but did not tell Emma when he saw her on the ward afterwards. He only told her later, apparently after other staff logged the serious error.
Emma therefore had no explanation for her sudden symptoms. Once she discovered what had happened, she suffered physical and mental trauma that she likens to 'having been assaulted'.
'Having my oestrogen disappear altogether and my testosterone level suddenly plummet by 50 per cent forever was life-changing and badly affected my mental health. I suffered immediate and extreme effects of menopause, including severe fatigue, cognitive impairment and a feeling of acute loss of sovereignty over my own body that has been impossible to overcome.
"There are around 47 symptoms listed on the British Menopause Society website with 27 most common. HRT and lifestyle changes do not solve it to pre-surgery levels. It is very complex and my symptom's still continue."
Following Emma's negative histology, the hospital's clinical director did suggest some weeks later Emma should consider HRT and referred her to her GP.
Struggling with the cognitive difficulties she experienced massively affected her ability to do her job and to take on additional work that has eventually resulted in her taking early redundancy with little likelihood of being able to return to similar work.
Emma felt she received 'zero help' from the NHS with few practitioners understanding what support women going through surgical menopause urgently need.
"I felt I should have been referred to a menopause specialist and I wasn’t. I had to do all my own research.
"The response I received often felt distinctly male-dominated and like something out of the middle-ages, ranging from 'well, you didn't need your ovaries anyway', to the common myth that the menopause is something you go through but eventually completely overcome.
"In my case, the symptoms and the work I had to do to get medical support have been all-consuming and I live not knowing what future health difficulties I might experience. My quality of life continues to be severely affected."
Claire, who Emma describes as 'brilliant and kind', instructed gynaecology and psychiatric experts to help construct a schedule of loss as part of Emma's claim, which includes her lack of consent to having her ovaries removed, plus the failure to inform her quickly about the error or to ensure a competent treatment plan was in place following the error.
The trust admits that Emma's symptoms were 'sudden and unexpected' and deprived her of the ability to manage her own menopause. It also admits breach of duty of care involving consent and communication of the error and that Emma has had to pay for private medical care to manage her symptoms. The trust apologised for the shortcomings in Emma's care and the claim continues.
Listen to neuroscientist Lisa Mosconis' Ted talk about the impact of menopause on cognitive health.
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