Claims for benefit payments for endometriosis across the UK have risen over the last five years, despite figures showing less than half of these claims are approved.
In 2024, there were 888,000 claims for personal independence payments (PIP) for endometriosis yet only 49% of these new claims were awarded benefits, according to data from the Department of Work and Pensions (DWP).
This means that more than half of people claiming for financial assistance due to symptoms of endometriosis are denied access to PIP payments.
PIP is a benefit available to people with long term ill-health or disability and to qualify a person must have a substantial condition, meaning that it has impacted daily living for at least three months.
PIP accessibility is assessed through an assessment centre and is available to those who also suffer fluctuating conditions, such as endometriosis.
Izzy, 24, was diagnosed at 16 after experiencing periods so heavy she often fainted from the blood loss.
She said: “There are days when the cramping is so painful I can’t move. My whole body is numb and even basic tasks such as eating become nearly impossible.”
In the UK one in ten women and those assigned female at birth experience endometriosis, a condition that occurs when cells found in the womb grow outside of the uterus, affecting the ovaries, fallopian tubes and pelvis tissue.
As a result, people with endometriosis can experience heavy periods, stomach pain and develop infertility over time.
Izzy said that her financial situation and earning potential was also significantly affected by her endometriosis, as there are multiple days she has to call in sick to work as her pain leaves her bed-bound.
Despite this, Izzy was denied PIP for endometriosis after failing a London assessment centre, aimed at judging how the condition affects everyday life tasks.
She said that on hearing the news of her denied application, the overwhelming feeling was disappointment as for her, endometriosis was a disability just like any other.
PIP assessments for endometriosis have previously been criticised by those attending as many feel as though their endometriosis is not treated with the same degree of concern as a visible disability.
According to a 2020 inquiry by Endometriosis UK, a criticism highlighted by women attending PIP assessment is that assessors lack the basic knowledge about the condition, leading to what they feel are inaccurate assessments and women being denied PIP on the basis that they ‘do not qualify’.
Others believe the assessment does not take into account the fluctuating nature of endometriosis, as women are assessed on a single day where symptoms might be less severe in comparison to the rest of the month.
In particular, endometriosis tends to flare up during a woman’s menstrual cycle.
Diagnosis for endometriosis is also notoriously low, despite people being assessed claiming to have the physical symptoms of endometriosis, such as heavy periods, severe cramping and pain during sex.
The average wait time for a diagnosis in the UK is eight years and ten months.
Emma Cox, CEO of Endometriosis UK said: “Those with endometriosis symptoms shouldn’t have to worry about losing their job, having to change career, or feel restricted in the types of work they can do.
“Symptoms vary person to person, from mild or no symptoms to very severe.
“We need employers to understand endometriosis and overcome myths and embarrassment about periods and menstrual health.”
In London, between 2011-2021, out of the three and a half million people showing alleged symptoms of endometriosis, only 1% of these claims were granted a diagnosis.
In terms of new claims for endometriosis related to PIP, Croydon is the London borough with the most, with 38,000 people claiming.
This makes up 7% of endometriosis PIP claims made by London residents.
Kingston and Richmond are the two boroughs with the fewest new claims for PIP, with just over 17,000 combined.
When approached for a comment, the DWP said: “We’re overhauling healthcare so women with endometriosis get the support they need, when they need it, with an extra £26 billion invested in the NHS.
“As set out in the Green Paper, we have also launched a review of the PIP assessment to ensure it is fit for the future and we will work with disabled people and key organisations representing them to consider how best to do this as we deliver on our Plan for Change.”
The future of endometriosis PIP, as well as benefits for other disabilities, continues to be uncertain after the government’s March announcement to reduce the amount of PIP you can claim, in an effort to encourage people back into the workforce.
Those claiming PIP for disabilities, including endometriosis, will have to wait until November 2026 the final verdict on what this means for their financial assistance.
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