Women with endometriosis have said they face a battle to access egg freezing on the NHS, as National Institute for Health and Care Excellence (Nice) guidelines recommending that they should be offered fertility treatments do not extend to cryopreservation.
Many women who meet the criteria of having a medical condition likely to lead to infertility are being told they do not qualify for NHS fertility preservation services, despite it being a recommended option for women who undergo cancer treatments such as chemotherapy, which can also affect fertility.
The Government has said it is “unacceptable” that so many women are not receiving the gynaecology care they need. It is yet to set out its plans to tackle the issue.
Endometriosis affects one in 10 women from puberty to menopause – affecting 1.5 million women in the UK and almost 200 million globally. It occurs when tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. It can be debilitating and can make it difficult to conceive.
Rhiannon Hurll, 24, from Kent, had always wanted to become a mother but that dream was put in jeopardy when she developed endometriosis as a teenager. She was told she did not qualify for egg freezing on the NHS.
Like the majority of women with the condition, Rhiannon waited years for a diagnosis, experiencing painful symptoms from the age of 12 and undergoing emergency surgery to remove an ovarian cyst.
“It wasn’t until I was 19 that they diagnosed me with endometriosis,” she said.
The severity of her symptoms meant that it was likely to affect her fertility, something between 30 and 50 per cent of women with the condition encounter.
But aside from a consultant telling her to “try and have babies before you’re 25”, it was only through her own research during her biomedical science degree that she discovered it could affect her fertility.
In 2021, she set up a petition calling for women with endometriosis to be entitled to NHS-funded egg freezing. It received more than than 41,000 signatures and an official Government response – but no shift in policy.
Nice guidelines state that care for women with endometriosis where fertility is a priority “should include… recommended fertility treatments such as assisted reproduction”, which egg freezing is cornerstone technique of. However its recommendation for egg freezing is specifically for cancer patients. When Rhiannon applied she was told “it’s very unlikely you will get it on the NHS” before being formally rejected.
“I wasn’t even that bothered, because that’s what you expect in women’s health, you get used to being let down.”
Instead she paid to have her eggs frozen privately. It cost £6,000 for a single round of egg freezing and £350 per year to store them.
In April this year, Rhiannon gave birth to a baby girl via natural conception. While she cannot unequivocally credit the egg freezing process for enabling her to get pregnant, she thinks it helped as it stimulates increased egg production and kickstarts ovulation.
“I’ve got one daughter, but I’d love to have another one. I’ve always said, if I’m going to have kids, I want two, so thank God we have got my eggs to use in the future,” she said.
Egg and embryo storage cycles are the fastest growing fertility treatments in the UK, according to the latest data from the Human Fertilisation and Embryology (HFEA).
The figures, which include both elective fertility preservation as well as egg storage for medical reasons, show egg storage cycles increased from 2,571 in 2019 to 4,647 in 2022 (+81 per cent), while embryo storage cycles increased from 8,251 in 2019 to 9,311 in 2022 (+13 per cent).
Elyse Blackshaw, 32, from Southwark, struggled for years to secure NHS funding for cryopreservation. She was diagnosed with endometriosis aged 22 in 2014, after initially being misdiagnosed with IBS.
After recovering from treatment for an ovarian abscess in 2022, she paid for a private AMH assessment.
“That indicated that my egg reserve was low but I didn’t have many egg follicles where you can collect the eggs and also they advised me to have my fallopian tube removed, because of how it had been affected by endometriosis,” she said.
Despite her diagnosis, she claimed she received limited advice about her fertility from specialists, which she said amounted to being told “not to worry until you’re trying”.
Last year, Elyse decided to freeze her eggs after feeling that her concerns were being dismissed. “I felt like if my fertility was already low at this point, it was only going to get worse.”
She had seen Rhiannon’s petition and spoke with her own specialist who told her they had previously advocated for NHS-funded egg freezing for endometriosis patients but had always been unsuccessful. She was also separately told that the NHS did not fund egg freezing at all outside of cancer treatment.
In an email seen by i, an NHS service manager asked a clinician to “explain to this patient that unfortunately, egg freezing is not NHS funded unless she is undergoing cancer treatment. If she wants to go ahead, she will have to explore the self-funded route”.
But South East London Integrated Care Board – responsible for meeting the health needs of patients in Elyse’s area – said decisions on funding egg freezing for endometriosis patients is “determined on a case by case basis”. It added that “a clinical assessment is made and if the condition is likely to lead to infertility then egg preservation may be an option to be considered”.
It said its policy is that egg freezing will be funded for eligible patients who are under the care of a specialist clinician who has confirmed one of the following: they are due to undergo a gonadotoxic treatment (meaning it will damage ovaries) or they have a medical condition that “is likely to progress such that it will lead to infertility in the future”.
It was unable to confirm how many women with endometriosis have been accepted for NHS funded egg freezing under its jurisdiction as it does not hold that data.
After months of asking for help, Elyse was told she could pursue an individual funding request where NHS clinicians ask NHS England, on behalf of a patient, to fund a treatment which would not usually be provided by the health service. She also contacted her MP, Harriet Harman, about the issue, who wrote to South East London ICB on her behalf.
“After having been told ‘no’ multiple times, I then randomly one day get approved,” Elyse said. She is due to start the process this month and has been granted one round of egg freezing and five years of storage.
Faye Farthing, head of campaigns and communications at Endometriosis UK, told i endometriosis “should be given parity with other conditions in accessing fertility preservation”.
“If an individual’s endometriosis, or the treatments they are receiving, could impact on their fertility, Endometriosis UK believes they should always have access to NHS treatment including for fertility preservation such as egg freezing.”
Catherine Hill, chief executive of Fertility Network UK, said: “If access to fertility preservation was opened up to people with other fertility conditions that are likely to lead to infertility or already mean they are infertile, that could save so much distress for women,” she said.
It could also save the NHS money as women who freeze their eggs at a younger age are more likely to undergo fewer rounds of IVF, she added.
A Department of Health and Social Care spokesperson said: “It is unacceptable that so many women are not receiving the gynaecology care they need, when they need it, and we know that more needs to be done to support women with endometriosis.
“It is vital that women’s voices are heard, and this Government will prioritise women’s health as we build a 10-year health plan to reform the NHS and make it fit for the future.”
