Women suffering from endometriosis are expressing frustration over their challenges in accessing egg freezing services through the National Health Service (NHS), despite guidelines from the National Institute for Health and Care Excellence (NICE) recommending fertility treatments for women with this condition.
The NICE guidelines—while non-binding—advocate for women with endometriosis who prioritize fertility to receive recommended fertility treatments, with egg freezing being a key technique. However, the guidelines primarily address cancer patients needing fertility preservation, leaving many women with endometriosis in a vulnerable position.
Despite meeting the criteria for medical conditions that could lead to infertility, many women report being informed by clinicians that they do not qualify for NHS fertility preservation services. This inconsistency has forced women to seek guidance from their regional Integrated Care Boards (ICBs), which evaluate requests for egg freezing on a case-by-case basis, unlike their cancer-afflicted counterparts.
Endometriosis affects approximately one in ten women from puberty to menopause, translating to about 1.5 million women in the UK and nearly 200 million worldwide. This painful condition arises when tissue similar to the uterine lining grows in other areas, such as the ovaries and fallopian tubes, often leading to difficulties in conception.
Rhiannon Hurll, a 24-year-old from Kent, had long envisioned motherhood, but her dreams were jeopardized by her diagnosis of endometriosis during her teenage years. Upon applying for NHS-funded egg freezing, she was informed that approval was “very unlikely,” eventually leading to a formal rejection.
Like many others, Rhiannon experienced years of misdiagnosis before finally receiving confirmation of her condition at age 19 after undergoing emergency surgery for an ovarian cyst. The severity of her symptoms raised concerns about her fertility, an issue affecting 30 to 50 percent of women with endometriosis. Aside from vague advice to “try and have babies before you’re 25,” Rhiannon relied on her own research during her biomedical science studies to uncover the potential impact of her condition on her fertility.
In 2021, she initiated a petition advocating for NHS-funded egg freezing for women with endometriosis, garnering over 41,000 signatures and an official government response, yet no policy changes followed. Ultimately, Rhiannon opted for private egg freezing, incurring costs of £6,000 for the procedure and an annual storage fee of £350.
In April, she celebrated the birth of her daughter through natural conception. While she cannot directly attribute her pregnancy to the egg freezing process, she believes it played a role in stimulating egg production and promoting ovulation. “I’ve got one daughter, but I’d love to have another one. If I’m going to have kids, I want two, so I’m grateful we have my eggs for future use,” she remarked.
The government has acknowledged the unacceptable situation many women face regarding gynecological care, although specific plans to address this issue remain undefined.
Recent data from the Human Fertilisation and Embryology Authority (HFEA) shows that egg and embryo storage cycles are the fastest-growing fertility treatments in the UK. Egg storage cycles surged from 2,571 in 2019 to 4,647 in 2022, an increase of 81%, while embryo storage cycles grew from 8,251 to 9,311, reflecting a 13% rise during the same period.
Elyse Blackshaw, 32, from Southwark, faced similar struggles in securing NHS funding for egg freezing. Diagnosed with endometriosis at 22 after years of misdiagnosis, Elyse experienced limited support and guidance regarding her fertility from specialists. Following a private assessment that indicated a low egg reserve, she decided to pursue egg freezing on her own.
After learning about Rhiannon’s petition and discussions with her specialist, Elyse felt compelled to take action when her concerns about fertility were downplayed. “I felt like if my fertility was already low at this point, it was only going to get worse,” she said.
Despite initial resistance, Elyse pursued an individual funding request, which allowed NHS clinicians to seek funding for treatments typically not covered. After numerous setbacks, she received approval for one round of egg freezing and five years of storage, set to begin this month.
Faye Farthing, head of campaigns and communications at Endometriosis UK, emphasized the need for equitable access to fertility preservation for women with endometriosis. “If an individual’s endometriosis or treatments could impact their fertility, they should have access to NHS treatment, including egg freezing,” she asserted.
Catherine Hill, CEO of Fertility Network UK, echoed this sentiment, suggesting that broader access to fertility preservation could alleviate emotional distress for women while also potentially saving the NHS money by reducing the number of IVF cycles required.
A spokesperson from the Department of Health and Social Care acknowledged the challenges many women face in receiving adequate gynecological care and committed to prioritizing women’s health in future NHS reforms. “It is vital that women’s voices are heard, and this Government will prioritize women’s health as we build a 10-year health plan to reform the NHS,” the spokesperson stated.
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