Amy Dowzell, 38, a Senior Governance Executive from Cardiff, was disbelieved and misdiagnosed for more than 20 years by NHS doctors; until she spoke to a private gynaecologist, who diagnosed Endometriosis within 15 minutes of meeting her.
At just 13 years old, Amy was made to feel like she was wasting her General Practitioner’s (GP) time when she spoke about her agonising periods; which meant she was “bedbound for days”. This started an uphill battle lasting for more than 20 years; to where she says she’s still fighting doctors today.
In 2019, Amy was given the opportunity to see a private gynaecologist through her employer. It was an appointment that changed her life. Since diagnosis, she has now had three laparoscopies and a total hysterectomy.
As someone undecided about a future with children, Amy says: “I always think about how different my life might be if I had been diagnosed earlier”.
Endometriosis is a painful and debilitating condition, where cells similar to the lining of the uterus grow outside of the womb and cause excessive bleeding.
Affecting one in 10 people, it is a long-term condition that can significantly impact sufferers from puberty onwards; but is sometimes difficult to diagnose as symptoms can vary.
Misdiagnosed with Irritable Bowel Syndrome (IBS), Amy continued to address the issues with her GP, and says:
“The medical gaslighting I experienced really impacted my trust in doctors as I was constantly made to feel I was wasting people’s time, even though I knew there was something wrong with me.”
“Doctors had countless opportunities to diagnose me during this time but would give up after a blood test for something completely unrelated came back clear.”
Luckily, a newly diagnosed friend mentioned a local Consultant Gynaecologist – Mr Anthony Griffiths. Practising at Spire Hospital, Mr Griffiths was the first medical professional who validated Amy, and gave her the answers that she had been waiting so long for.
In 2020 it was confirmed that Amy had stage 4 Endometriosis, and that it “was one of the worst cases that he’d ever seen”. In 2022 Amy was also diagnosed with adenomyosis and was told a hysterectomy would be her only option moving forward.
In April 2022, Amy finally had the total hysterectomy, however, she wishes she’d known how difficult dealing with menopause at such a young age would be; Amy has experienced challenging symptoms, such as insomnia, fatigue, brain fog, itchy skin, arthritic symptoms and depression.
In order to raise awareness and offer support to others experiencing similar issues; Amy and her friend, Hannah set up an Instagram account dedicated to validating those who may have felt unheard or alone.
Offering a sense of community and signposting to relevant agencies; the account engages followers through honest, personal accounts and a blunt sense of humour.
Describing the Endometriosis community as “a lifeline”, Amy’s advice to anyone who suspects they may have the condition (or who has already been diagnosed) is to talk. She says:
“The more we talk about this condition, the less stigma will be applied to it and what we go through”.
“Endometriosis is a common chronic condition prevalent in 10 per cent of women of reproductive age. There is demonstratable lack of understanding of the condition amongst a considerable number of health professionals, resulting in significant delay in diagnosis, poor management of symptoms resulting in negative outcomes for those patients affected.”
Health Minister, Eluned Morgan MS has committed to improving healthcare in Wales, including gynaecological conditions. In a consultation between June and November 2022, 3,800 women were able to voice their experiences.
“I have heard distressing accounts of misdiagnosis and women with this condition not being taken seriously with this condition. I am determined that women in Wales get the service they deserve.”
Following a £1M investment in the delivery of schemes to improve women’s health services; specialist endometriosis nurses were appointed in each health board in March 2022.
“Historically women’s health services have not had equal treatment and women’s voices have been ignored. I am determined that we raise the standards of all women’s health services in Wales and this summer I will be publishing a Quality Statement setting out how that will be achieved.”
When asked, Cardiff and Vale University Health Board declined to comment.