Alice Cooper can remembers being bent in half, lying down on the floor of a toilet cubicle at her office, with her hands wrapped around her stomach. Profusely sweating, she couldn’t move, while tears are streamed down her face, as she tried to stay as quiet as possible.
When the pain was just about manageable, Alice stood herself up, unlocked the door, and walked back out onto the office floor. To her colleagues, nothing had happened – and she never said a word, not wanting anyone to know what she’s going through because, in her mind, they wouldn’t understand.
Like one in 10 women, Alice has endometriosis, meaning the tissue that lines her womb grows around other organs in the body. The debilitatingly painful disease can impact every aspect of life: sex, fertility, mental health -and work; those with the condition earn £130 less per month on average, and one in six give up their careers entirely.
Alice admits that she has felt so guilty about taking days off due to the condition, that she ended up leaving jobs. ‘I’ve had to quit every role I’ve been in, four in total, until my current admin position,’ the 25-year-old tells Metro.
Nicole Bowler, 24, was diagnosed with the same condition last year and has also felt the impact. She just deferred teacher training for a year, as balancing study and work, with her ill health, became too difficult. ‘Being financially independent and having a job gave me purpose, so I’ve lost a lot of self-worth,’ she tells Metro. ‘Having so much taken out of my control has been extremely distressing.’
To improve circumstances, Nicole and Alice, along with many others, are pushing for menstrual leave in the UK for women with endometriosis or adenomyosis (a similar condition where the tissue grows inside the muscular wall of the womb).
A petition proposing that everyone with the conditions be offered three extra days of paid sick leave per month has reached 74,000 signatures.
The government responded in August, saying that it is understood that the conditions cause ‘difficulty and pain’, but they claim the Equality Act 2010 already sufficiently covers the needs.
‘Endometriosis and adenomyosis can be classified as disabilities, and individuals with a disability are protected from discrimination, and their employer is required to make reasonable adjustments,’ they stated in an official reply.
However, Nicole says it’s been her who has been adapting, instead of the world, since her first ‘heavy, painful and tiring’ period aged 13. At the time, she was competitively swimming, training up to 26 hours per week with hopes of turning professional.
‘On one residential swimming trip, I had to sit out of all the activities for three days, because I couldn’t go 45 minutes without having to change a super heavy tampon. I was so self-conscious back then, and felt so embarrassed when, on occasion, blood started dripping down my legs,’ she remembers.
In time, Nicole began to avoid training, especially with male coaches, who didn’t always understand why she needed to use the toilet often, before making the tough decision to leave the sport completely.
When she began getting stabbing pains in her lower abdomen at 14, her mother realised how serious her ‘period pains’ were becoming and took her to see the doctors. ‘I changed as a person, because I didn’t have any of the energy that I used to have.’
A male GP remarked that it was just because she was a young girl, and that it was ‘part of being a woman’. ‘He even made a joke that “girls will do anything to get out of sport”,’ Nicole recalls.
In the years that followed, she made multiple appointments in an effort to get answers, and sadly, even hospital stays after A&E visits brought no long-term solutions.
Nicole felt continually dismissed. ‘I was thinking “Is it just me? Am I just being dramatic? Can I not handle pain?” because I was constantly told that this is normal, so I doubted myself,’ she says. ‘I get so down about everything.’
Alice had a similar experience, feeling ignored for years, despite extreme bleeding and pain. She tells Metro: ‘I’d always come on my period in the middle of the night, and I’d be in such agony that I was just trying to make it through to the next day. It would leave me absolutely shattered, and bleeding could be so bad that I’d leak through my tampon, pad, knickers and leggings in an hour. I’ve had to miss school growing up, and work as I’ve got older.’
The persistent problems meant that Nicole spent much time with her mum in Dewsbury, rather than with her friends at university in Manchester. She managed to graduate with a degree in journalism, but didn’t have the experience she had hoped for. After that, she began working full-time as a lifeguard.
‘There were multiple times when I had to call in sick. It kept being flagged to HR, so I’d have to attend meetings. The only reason I didn’t lose my job was due to a few understanding managers,’ Nicole says.
Endometriosis
Endometriosis is a condition where cells similar to those in the womb lining grow in other parts of the body, usually on the ovaries, outside the womb and on the fallopian tubes.
This tissue breaks down and bleeds during your period, which can cause severe pain – although this pain can occur outside of menstruation too. For example, you can get pain in your lower tummy and back, pain during sex, extreme fatigue, and pain of bleeding in your chest and shortness of breath.
There is no cure for this condition.
The disease takes, on average, around nine years to diagnose. The condition can only be found during surgery, as it doesn’t show up on scans, which can be part of the reason for a delay. For Nicole and Alice, it was around ten years after their first periods that they finally got confirmation of what they suspected.
‘I had to take a month off after the surgery, where they also lasered the endometriosis from my bowel and bladder. My workplace refused to phase my return, and could not provide any reasonable workplace adjustments like teaching from the side of the pool instead of in the water,’ Nicole, who was then working as a swimming teacher, says.
‘Not being able to work and being made to feel like I was being dramatic about it knocked my confidence and caused stress. I was scraping by each month, struggling to afford rent and bills due to not being paid while sick.’
After the recovery, she had six pain-free months and began training to be a school teacher, but symptoms rushed back.
Nicole now suffers from sciatica, pain in her ribs, back, and abdomen, and feels fatigue and nausea. Once again, she has had to take an enforced career break, so, unsurprisingly, feels passionate about the UK introducing the bill for menstrual leave, something already offered in Portugal and Spain. Such a change in law would ‘take some of the stress away’ and the regular rest could help Nicole recover from pain quicker, she explains.
‘It would finally acknowledge that it’s a painful, inflammatory, full-body, incurable disease, rather than just the time of the month,’ she adds.
‘Women’s health needs to be taken so much more seriously, but the government’s responses can feel robotic, disheartening and like a punch in the gut.
‘I can get statutory sick pay, but leave for endometriosis still goes down on my records, and taking off too many days can be a sackable offence. It’s scary; I’ve often feared losing my job.’
Alice recalls the awkward conversations she used to face at work. ‘I’d get questions like “Well, are you sure you can’t come in?” “Can you come in later?” “Have you taken painkillers?” I’ve gotten better at speaking about it now, but before, it was easier to go than have the conversation,’ she explains.
‘I felt silly telling bosses, as I worried they were looking down on me and thinking, “It’s a period, grow up.” As there’s not enough awareness, they think I just want time off. I didn’t feel taken seriously.’
Now, Alice feels that the conversation is finally changing and becoming more positive, which has empowered her to talk about it more with her current employer – although, she adds, there’s still a long way to go. One improvement she would like is more company flexibility on work-from-home days.
‘I’ve never really had that as an option, and it would make work so much more accessible for people with endometriosis. If someone can sit in their bed with a laptop, they can be comfortable, and going to the toilet often is easier,’ Alice explains.
‘It is a chronic illness that needs more support,’ Nicole adds. ‘It’s very lonely taking time off, especially when no one gets it, so a law change would make me feel validated and supported.’
When a campaign reaches 100,000 signatures, there is an obligation to debate the proposal in parliament. If that happens, Alice wants MPs to know how life-changing it would be for women.
‘It’s not a small number of people that we’re talking about. So many women suffer with this, and it would be such a better quality of life. Dismissing it again and again isn’t what we need,’ she says.
‘Endometriosis is never going to be easy to live with, but it doesn’t have to be as hard as it is now.’
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