WOMEN’S health in Jersey continues to face gaps in diagnosis, care and support, Islanders heard at an endometriosis awareness event this week – and campaigners have argued that the Government should respond with a joined-up strategy, Jodie Yettram reports.
Health professionals, politicians and advocates came together to speak about the challenges facing women living with endometriosis and the wider need for reform in women’s healthcare at an event organised by Endometriosis Jersey held at the Jersey Arts Centre on Tuesday.
The evening opened with a screening of Below the Belt, a documentary following four women navigating life with endometriosis – a condition affecting one in ten women that is often misdiagnosed or misunderstood.
The screening was followed by a panel discussion featuring consultant obstetrician and gynaecologist Dr Fiona Nelson, physiotherapist Alexandra Frankham, Deputy Lucy Stephenson, women’s health advocate Trudi Roscouet, wellbeing consultant Jessica Pinnell, and endometriosis advocate Rebecca Bailey.
Discussion focused on the need for earlier diagnosis, improved professional training, and a reinstated women’s health strategy that would provide a long-term plan for delivering coordinated reproductive care in Jersey.
“No information, no support, and no understanding”
Kate Fry, founder of Endometriosis Jersey and organiser of the event, opened the event by sharing her personal experience.
“I remember being a young teenager, being driven home from school after fainting from excruciating pain,” she said.
“All I wanted, desperately, was for someone to tell me what was happening, why it was happening, and how I could fix it – but there was no information, no support, and no understanding.”
Rebecca Bailey, who also has the condition, told the audience how specialist surgery in the UK changed her life after years of debilitating symptoms – and encouraged newly diagnosed patients to reach out for support.
“I was one of the lucky ones,” she said. “Overnight, my pain disappeared.”
“I just want to encourage [newly diagnosed patients] that there are people who understand you and who can help you.”
Understanding and treating endometriosis
Dr Nelson explained that while endometriosis is typically thought of as a gynaecological issue, it can affect other parts of the body and should be considered systemically.
The consultant said: “A patient might not necessarily come to gynaecology first, which is why wider education for other specialities to be aware of the possibility of endometriosis is needed.”
She explained that while “the majority” of endometriosis often affects the pelvis, it can also affect other organs and systems throughout “the entire body”.
“I’ve got a lady who’s had collapsed lungs on several occasions because there’s endometriosis in her lung cavities,” Dr Nelson said. “I’ve had patients who have monthly bleeds in their eyes because there’s endometriosis in the whites of their eyes. There has been endometriosis reported in the brain before.”
The gynaecologist explained that while Jersey can diagnose and manage the symptoms of some patients locally, more complex cases that require endometriotic lesions and associated scar tissue to be surgically removed – known as excision surgery – must be referred off-Island.
“Some excision surgeries are more complex than cancer surgery,” Dr Nelson explained. “So that’s never going to be the mainstream of your average gynaecologist in Jersey.
“Our mainstream is going to be to make the diagnosis and to triage the most appropriate cases that are going to be sent off to tertiary centres that deal with endometriosis [in the UK].
“But we need to still do our bit and still do our best for all of the women and give them the appropriate care and management,” she added.
A multidisciplinary approach to treating endometriosis
Physiotherapist Alexandra Frankham discussed how Jersey’s pelvic pain clinic uses a multidisciplinary model to support patients with chronic pain.
“When it comes to endometriosis and all forms of chronic pain, it really should have this holistic approach, because it’s not just the disease that needs treating. It’s the whole system,” the pelvic health specialist said.
She added: “If we keep that conversation going and we’re brave and we communicate with each other as professionals and as individuals, then we can continue to move forward.”
Women’s health strategy
Some panel members also renewed calls for the Government to reinstate Jersey’s women’s health strategy after it was scrapped last year due to “resource constraints” – despite 1,600 Islanders engaging in a consultation on the topic.
Less than half of respondents said their physical health needs were being met, and only a third felt their mental health was adequately supported.
Deputy Stephenson, who sits on the Health and Social Security Scrutiny Panel, argued that reproductive healthcare remains fragmented without a dedicated roadmap.
“There had been a previous plan to have a full strategy – and there now isn’t,” she said.
“We’ve heard a lot of talk about working together, multidisciplinary approaches, whole-system approaches, from healthcare professionals to nutritionists to the community around us.
“And it to me, as somebody who’s not in the government, it just screams that we need that women’s health strategy.”
Education and stigma
The need for education about endometriosis and other women’s health conditions across schools, workplaces and healthcare settings emerged as a common theme during the discussion.
Wellness coach Ms Roscouet spoke about the need to educate female students about what constitutes a “normal” period, and to involve men in conversations
about women’s health to reduce the stigma that surrounds it.
“This is not a women’s issue. This is a human issue,” said Ms Roscouet. “We need to break the taboo.”
Diet, stress and lifestyle
Wellbeing consultant Ms Pinnell discussed how diet and lifestyle changes can help manage endometriosis symptoms.
“We’re mainly looking at applying the principles of the Mediterranean diet,” she said.
The nutritionist said she advised endometriosis patients to increase their consumption of oily fish, vegetables and antioxidants, cut back on processed food and red meat, and to prioritise rest and stress management.
This was something supported by Ms Bailey, who spoke about how she now plans her week to conserve her energy and manage flare-ups.
“I started to value rest,” she said.
“We’ve got the answers. Now invest”
The panel called on the government to revisit the women’s health strategy, improve training for GPs around endometrosis and promote understanding about menstrual health in schools and workplaces.
“We just need to come together, bring the ideas together, and let the government listen to what women want,” Ms Roscoe urged.
Endometriosis Jersey founder Ms Fry concluded the event by stating: “We’ve got the answers now. It’s time to invest in people.”
