Debilitating cramps, exhaustion and repeated infections left a woman searching for a diagnosis.
Freya Nepaul, a business student from Greenhithe said she first began experiencing symptoms when she started her periods aged 11, but her heavy bleeding and pains were treated as normal.
Freya Nepaul suffered cramps, exhaustion and heavy bleeding for years before she was diagnosed with endometriosis
“We weren’t told much in school about what a normal period should be,” the 22-year-old said.
“It was just ‘use a pad’ and that was it. No one explained how heavy was too heavy or when pain wasn’t normal.”
The university student said her symptoms worsened when she was around 13 or 14, with increasingly heavy beelding, although the pain initially only occurred during her period.
A GP later prescribed her the contraceptive pill to manage the bleeding, but she said the side effects were difficult.
“It gave me lumpy breast tissue and my hormones were all over the place. It just made me feel crazy,” she said.
She was sent for a scan at the time, but said she was told the results were normal and no further investigation was carried out.
Her symptoms became significantly worse during her second year at university, when she began experiencing severe cramps outside of her period.
“I’d wake up in the morning and I couldn’t get out of bed. I didn’t realise at the time they were flare ups,” she said.
Freya Nepaul’s symptoms were dismissed as simply strong period pain
She also developed food intolerances, bloating, exhaustion, and pain during and after intercourse.
“I was always going to the doctors about dizziness and tiredness. They did blood tests and said everything was normal, but I was exhausted all the time.”
Freya said she often visited male GPs to discuss her symptoms, but felt her concerns were dismissed as simply stronger period pain, with stronger painkillers prescribed and the contraceptive pill suggested instead of further investigation.
“I remember going home and crying after that appointment to my housemates at the time, because I was so frustrated.
“I knew something was wrong and he just wasn’t listening to me,” she said.
Her symptoms worsened further when she experienced three urinary tract infections within two months.
She then saw a female nurse at her GP practice, where she said she was finally properly listened to.
She arranged further blood tests and referred Freya for an ultrasound.
By this point, Freya had researched her symptoms and suspected she had endometriosis, which she raised during the appointment.
“I said to the nurse ‘I think it could be endometriosis or something serious’ because my aunt had ovarian issues,” she said.
Exercise now triggers flare-ups for Freya
“I couldn’t live like this anymore.”
She was referred to a private gynaecologist thanks to her father’s health insurance.
After a four-month wait at a private hospital, Freya underwent keyhole surgery in Manchester, where she studies at university, to remove the endometriosis tissue.
Doctors also recommended a hormonal coil to help manage symptoms, but Freya initially declined because previous hormone therapy had made her feel unwell and affected her mood.
She said recovery took several weeks and at first she felt much better, but after a few months her symptoms returned.
“It’s a chronic illness, Freya said. “It never goes away.”
She said the reality of living with a chronic illness at a young age has been very difficult for her.
She previously played rugby and ran regularly, but intense exercise now triggers flare-ups
Freya Nepaul now tries to rise awareness about endometriosis
Endometriosis UK, a national charity that supports people affected by the condition and campaigns for better diagnosis and care, says symptoms of endometriosis can vary and are often mistaken for other conditions such as IBS, painful periods or urinary problems.
The charity states that, on average, it takes around nine years for women in the UK to receive a diagnosis, meaning many live with symptoms for years before getting answers.
It also explains that there is currently no cure, and while some women may experience temporary relief during pregnancy, symptoms can return afterwards.
Endometriosis can also affect fertility, although many women are still able to have children.
MP Kirsteen Sullivan, chair of the All-Party Parliamentary Group on endometriosis which has launched an inquiry into endometriosis and the workplace, said: “One in 10 women have endometriosis and they must get the support they need.
“Around one in six women with endometriosis end up leaving the workplace, which is completely unacceptable, and could be avoided by giving employers support.
Freya believes a lack of training and awareness among some GPs can lead to delays in diagnosis and treatment
“Unacceptable gynaecology and diagnosis times for endometriosis are affecting women and their ability to remain in the workplace.”
Freya’s options now include further surgeries or hormonal treatment to help manage symptoms although none of them offers a permanent cure.
“There’s no a magic cure,” she said.
“It’s something I’ll have to manage for the rest of my life.”
She is now speaking out to raise awareness after years of struggling to get answers, saying that while awareness of endometriosis is improving, there is still much more to be done.
Freya said she wants young women to recognise the symptoms and seek help sooner.
“You know your own body,” she said. “If something doesn’t feel right, keep pushing.
“I had to keep going back because I knew something wasn’t right.”
She believes a lack of training and awareness among some GPs can lead to delays in diagnosis and treatment.
“I want women and doctors to know this may not be just bad period pain, and if symptoms are recognised earlier it could improve women’s lives,” she said.