Health / Islander speaks out to raise awareness of common condition that can take years to diagnose
A LOCAL health care worker who waited an entire decade to be diagnosed with endometriosis has called for greater funding to be committed to research to enable the condition to be diagnosed and treated more speedily.
Thirty one year old Gemma Graham says that five years ago a nursing colleague recognised what she was going through and told her she thought she might be suffering from endometriosis. She had already been in extreme pain for several years without knowing what was causing it.
Gemma, who is full of praise for her employer NHS Shetland’s support in treating and managing the condition, is now speaking publicly about her personal experience to raise awareness. She is supportive of Endometriosis UK’s campaign for more funding and improvements to how it is treated.
The NHS defines the chronic condition – affecting around one in ten women of reproductive age – as one where tissue similar to the lining of the womb starts growing in other parts of the body including the ovaries and Fallopian tubes.
It can cause debilitating pain during menstruation, ovulation, sex, urination and bowel movements. Other symptoms include inflammation, bloating, heavy bleeding and fatigue, and it can affect fertility.
A new Endometriosis UK report, published last week, calls for better education, awareness and treatment.
Sadly stories similar to Gemma’s about painfully slow diagnoses are all too commonplace: the organisation estimates it takes an average of eight years from the onset of symptoms.
By the time her late colleague Gill took her aside in 2017, Tingwall resident Gemma had been going to the doctor for years with “extreme pain, extremely heavy periods, bleeding constantly, extreme bloating, chronic fatigue” and “crippling pelvic pain which meant I was unable to walk when it was at its worst”.
She had initially been labelled as having IBS and had a “terrible experience” with a dismissive gynaecologist in her early twenties, leaving her “in tears, feeling defeated and not fighting my corner”.
Gemma’s colleagues persuaded her to get a GP referral to get the ball rolling, and in April 2019 she had surgery and was finally diagnosed with endometriosis.
“Ten years I had been saying something was wrong with me,” Gemma says. “Ten years! Finally I knew that I wasn’t going crazy, that it wasn’t all in my head like I’d been told previously. I felt validated and heard.”
However, in many ways the surgery was just the beginning. She found herself having to “navigate this disease that I really didn’t know much about”, only to discover in the process of educating herself that there was “so much that is unknown” to the entire medical community.
It is not known what causes endometriosis or how it spreads, and while there are treatments no cure has been found yet.
“I’ve forgotten what it feels like to have a pain-free day,” Gemma says. “I can’t remember what a pain-free night’s sleep is like. Unable to eat because you can’t bear to put anything in your stomach because it’s too painful”.
At times she endures a “constant feeling of exhaustion that no amount of sleep and coffee will fix” and struggles with “pumping your body full” of unnatural hormones, often taking strong painkillers “just to dull the pain, not eradicate it”.
The new Endometriosis UK report found that care for the condition in Scotland was not meeting the “base level” required.
It recommends implementing NICE (National Institute for Health and Care Excellence) guidelines quality standard across Scotland; building relationships between healthcare services to allow for smoother referrals; increasing education at both primary and secondary levels to ensure GPs and non-specialist gynaecologists are better informed; and investing in awareness through a public health campaign.
Following a question session in the Scottish Parliament this week, Shetland MSP Beatrice Wishart said the condition “can have debilitating physical and mental impacts on those living with it”.
Wishart pointed to research estimating 1.5 million UK women are affected, with between 30-50 per cent of women affected by infertility believed to have endometriosis.
“I have been told about relationships breaking down because of the strain this condition can put on a marriage,” she said.
“Sexism is part of the issue in tackling this condition. If there were a similar painful medical condition that affected the same amount of men there would have been greater action by now.
“We must improve awareness of the condition to drive down the time taken for diagnosis and waiting time for treatment.”
Wishart highlighted the existence of a North Highland support group for Endometriosis UK, which includes Shetland as part of its network, and said the group “would be welcoming to anyone living with the condition”.
After waiting two years due to Covid-related delays, at the beginning of 2022 Gemma underwent a further procedure to remove some tissue and assess how her disease had progressed.
Surgeons discovered it has “spread to other areas and unfortunately not all of it could be removed because of where it is situated”. It is not something she had been expecting and “that’s now something I’ve got to wrap my head around”.
The condition has had a “life changing” effect but Gemma feels “lucky to be healthy and have special people in my life” without supportive colleagues, friends and family – including her partner Tommy and her mother.
As a senior health care worker in NHS Shetland theatres she is “very fortunate” to have been working in a clinical environment “surrounded by people who are educated about this condition” and without Gill’s intervention “I really don’t know where I’d be now”.
“It’s weird being a patient in your own department,” she says. “But my fantastic team took really good care of me. They really are the best!”
Gemma says women’s health in general remains “massively underfunded and seriously outdated”, with the stock answer to many gynaecological problems being to “throw hormonal contraceptives at it” with all the “adverse effects on your body and mental health” that go with it.
“We should know why this happens and how the disease works,” she adds. “We should have options other than ‘you’re just going to have to live with this’. We should have funding for research.
“We have to push for this for ourselves but not only that, for our daughters and granddaughters, as this is not going to go away. The support is nonexistent. It needs to change.”
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