I lost my job in a primary school due to endometriosis

Hayley Locksley was 11 years old when she started her periods and excruciating pain became part of her life.

"I used to spend every month in the sick room at school," she says.

Hayley, from Shefford, Bedfordshire, would often pass out from the pain but the doctors' advice was to take paracetamol.

Aged 24, she was diagnosed with endometriosis - a condition that affects one in 10 women, where tissue similar to the lining of the womb grows outside of the uterus.

Hayley says she loved her job working in a nursery, but her employers questioned whether her symptoms were real and asked her to use annual leave to cover sick days.

After she had surgery for endometriosis, Hayley decided to switch to office work, due to it being less physically demanding. But her new colleagues asked why she was spending so long in the toilet.

"I had to explain that my bladder sometimes did not empty fully, causing severe pain and horrendous diarrhoea. I found the questioning embarrassing and humiliating," she says.

After having her daughter, who is now aged seven, Hayley decided to pursue her dream of working with children again and became a special needs teaching assistant in a primary school four years ago.

However, she was placed under review after her sickness absence increased and she lost her job last October, after being told she was unfit to work.

"I didn't want to give up my career but my health meant I could no longer continue," she says.

"I now use a walking stick, experience severe back and leg pain, and have fallen numerous times. Losing my job has been so tough for my mental health," she adds.

Nearly half of women with endometriosis have lost income due to the condition, according to a new report by the All-Party Parliamentary Group on Endometriosis.

The inquiry found 97% had worked while in severe pain, 47% had lost income because of their symptoms, and 28% had left a job altogether.

Endometriosis surgeon Dr Rebecca Mallick says the figures are shocking, but not surprising.

"Women should not have to choose between their health and their careers. We have raised awareness for years. Now we need meaningful action," she says.

Carla Cressy worked as a model from the age of five until she was 17, but she kept collapsing on shoots and retrained as a self-employed beauty therapist.

The 35-year-old from Essex was diagnosed with endometriosis 10 years ago. Yet as it was left untreated for so long, it progressed into frozen pelvis disease and destroyed her reproductive organs, leaving her needing bladder reconstruction and a total hysterectomy.

Carla now runs the charity The Endometriosis Foundation and gave evidence to the inquiry.

"Having experienced first hand the impact endometriosis can have on your working life, I know just how difficult it can be. And these are things we hear about from our community every single day.

"People struggling to stay in work, taking time off for treatment, losing income and sometimes having to give up careers they've worked incredibly hard for.

"I really hope this isn't where the conversation ends. We need to keep the pressure on government to prioritise endometriosis care, but employers have a part to play too. Better understanding and support in the workplace can make such a difference to someone's life."

A Department of Health and Social Care spokesperson agrees the condition can have a "devastating impact" on women's lives and says the inquiry's findings highlight the need for better support, both in healthcare and in the workplace.

Faye Ramsey, 32, from Ipswich, spent 10 years in agony, with doctors suggesting she had irritable bowel syndrome before she was finally diagnosed last year.

She had a hysterectomy in June and had her endometriosis removed but struggled mentally and physically to return to work as a teaching assistant.

Through her work as the founder of a support organisation called Girls Anatomy, Faye has met women who have lost their jobs, had their hours reduced, or been physically sick at work after "dragging themselves in...because they don't want to lose their jobs".

Faye, who also gave evidence to the inquiry, wants to see more endometriosis friendly recognised employers and better protection for women with the condition in their probation periods.

"It's not pleasant to try and fight for your job and justify why you're the way that you are and why you're having that time off," she says.

"Your absence policy shouldn't be the same as someone who is able-bodied and has no medical condition, you shouldn't be [judged] against that person because it's just not fair."

The government says it is working with employers to improve awareness of the condition.

More than 6,000 women were interviewed for the inquiry and 94% said employers lacked a good understanding of endometriosis, and half received no workplace adjustments.

Of the 250 employers surveyed, 72% said their organisation gives no training or guidance on women's health.

But Matthew Percival, the Confederation of British Industry's future of work and skills director, says businesses are "increasingly aware of women's health issues".

Firms are keen to explore how they can support women "without their careers being held back", in a "wider shift" towards helping improve health and wellbeing in the workplace, he adds.

Hayley, Carla and Faye all say they hope employers can show more understanding of endometriosis in the future.

They want women to be believed, treated with dignity and supported to remain in work.

"Behind every absence, every appointment and every person who struggles at work, there may be a much bigger story than they realise," Hayley says.

Hayley hopes she will be able to return to the classroom one day, but at the moment she knows it is not possible.

"Endometriosis has taken so much from me. I don't want to be in this position. I loved my job and I worked really hard. To be told at 40 years old that I'm not fit for work, I'm now left wondering, is that it for my working life?

"I'm still 25 years away from retirement age. Am I going to be able to ever work again?"

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I had to stop modelling because I kept passing out from crippling endometriosis