Toni Potter, 34, from Shropshire, suffered for decades with severe endometriosis, a condition where tissue similar to the lining of the uterus grows in other parts of the body.
Endometriosis can cause extremely painful periods that prevent women and girls from attending school and work.
At one of the most debilitating stages of her endometriosis journey, Ms Potter found herself “completely incapacitated” for 10 days a month.
“I’d had symptoms since I was 12,” she said but it would take two decades before she received a definitive endometriosis diagnosis. In England, women wait up to eight years and 10 months to be diagnosed with the condition, according to research by Endometriosis UK.
In 2020, Ms Potter paid for private treatment at the Endometriosis Clinic in Birmingham for management of her symptoms after being told by the NHS the only option for treatment was medically induced menopause, which is achieved either through the reversible method of taking prescribed hormones or the irreversible surgical removal of ovaries.
Ms Potter said she was not given the opportunity to access egg freezing, also referred to as oocyte cryopreservation, on the NHS despite endometriosis symptoms so advanced she underwent a hysterectomy and ovary removal aged 32 in 2022 under the care of the private clinic. Eighteen months after the hysterectomy, Ms Potter’s second ovary was removed.
The National Institute for Health and Care Excellence guidelines – which are non-binding – 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 a key element of. However its recommendation for egg freezing is solely for patients requiring cancer treatment such as chemotherapy.
Due to this, many women are forced to consult their regional Integrated Care Boards (ICB) where decisions for egg freezing endometriosis are made on a case by case basis.
“I was officially diagnosed with endometriosis at the point of my hysterectomy in 2022,” she said, adding she wanted to keep both ovaries but had to have them both removed as their condition deteriorated.
Up until the point of her surgery, Ms Potter said she was “never” warned about the full impact endometriosis and related surgeries could have on her fertility.
Instead she had been told to return for advice when she was actively trying to conceive prior to her surgeries.
“I was given the option, to have an excision surgery with a two year window to try and get pregnant if I wished,” Ms Potter said. “But obviously, I wasn’t at that point wanting or in a position to have children.”
Ms Potter said when she asked about the possibility of egg freezing on the NHS, staff told her it was “only offered to patients who were losing their ovaries due to cancer”.
“I obviously had the option to freeze my eggs privately, but wasn’t financially able to do that,” she said.
“I never really thought I wanted children. I definitely wasn’t in a place to be having children at the point of having to lose my ovaries and womb. So having the option of freezing would definitely have been something I would have done because of not yet knowing.”
“Having the choice taken away is weird,” she added. “I would have 100 per cent frozen [my eggs].”
Two women with endometriosis so extensive it threatened their ability to conceive naturally but were granted NHS-funded egg freezing, previously also told i they were told to return to consultants for advice on getting pregnant once they were actively planning a family.
Symptoms of endometriosis
Symptoms happen when patches of endometriosis break down and bleed during your period but cannot leave your body.
You might have some symptoms during your period, such as:
- severe period pain, that stops you from doing your normal activities
- heavy periods, where you need to change your pads or tampons every 1 to 2 hours, or you may bleed through to your clothes.
- pain when you poo or pee
You can have other symptoms at any time in your menstrual cycle, such as:
- pain in your lower stomach and back (pelvic area)
- pain during or after sex
- extreme tiredness (fatigue)
NHS Shropshire, Telford and Wrekin (NHS STW) said: “Women should discuss their individual condition with their consultant and can refer to the relevant policies.”
It said it accepts patients for NHS funded egg freezing in line with the criteria set out in its gamete retrieval and cryopreservation policy and policy for the management of fertility treatment.
The cryopreservation policy outlines that patients who are going to have their ovaries “removed as part of NHS funded treatment e.g. to prevent the spread of disease” where their application is supported by their NHS consultant are among those eligible.
Patients at immediate risk of premature ovarian insufficiency are also considered eligible.
The integrated care board was not able to confirm which policy was in place at the time Ms Potter’s hysterectomy was listed.
Another ICB told i eligible patients include those who have a medical condition that “is likely to progress such that it will lead to infertility in the future”, while a third said decisions are made on a “case by case basis”.
Faye Farthing, head of campaigns and communications at Endometriosis UK, said: “Endometriosis UK often hears from those who do not have a diagnosis of endometriosis, and may only even hear about the disease at the point of trying and struggling to conceive.
“It’s vital that patients who do not yet have a diagnosis, but are experiencing the symptoms of a menstrual health condition, also have access to the right fertility support if fertility is a priority for them.”
NHS England was approached for comment.
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 Ten-Year Health Plan to reform the NHS and make it fit for the future.”
