The invisible battle: How Ipswich women are breaking the silence on endometriosis

"I have times where I've laid there and thought I'm not going to wake up in the morning because the pain is so bad," Monica recalled.

Monica's fight to be heard

Monica’s experience echoes a wider injustice: women’s pain is frequently dismissed as psychological rather than physical. Over nearly two decades, doctors repeatedly told her, "it's normal," or worse, "it's all in your head."

At one devastating moment, paramedics brought Monica to hospital in severe distress. A nurse openly questioned: "Why have you brought her in? She fakes this." Monica remembers vividly, "My whole world just collapsed around me."

The disbelief drove Monica to therapy, convinced her suffering was imaginary. It wasn't until an empathetic GP finally listened that she discovered her pain was very real.

"I had a doctor who wrote on my medical notes that I was mentally disturbed because of my childhood trauma," she says. "Ten days later, I had emergency surgery for a bowel obstruction."

Her turning point came when her symptoms worsened. "I started bleeding from my back passage. And still, I was told I was fine. That’s when I found the GP who finally said, 'I think you’ve got endometriosis.'"

The reality in Ipswich

Monica’s experience isn’t isolated. Ipswich—and all of Suffolk—doesn't have a single endometriosis specialist. Women must rely on general gynaecologists or travel out of county for appropriate care, often delaying diagnoses and prolonging suffering.

Across the UK, it takes an average of eight years to diagnose endometriosis. Monica waited more than twice that.

"In Suffolk, we don't have an endometriosis specialist, we only have general gynaecologists," she explains. "And 84% of women feel unheard by the health system. My experience isn’t unique—it’s painfully common."

Monica Thomas

Beyond "just a period problem"

Endometriosis is often misrepresented as a menstrual issue—but its impact runs far deeper. Monica recalls vividly being told: "Endometriosis doesn't affect your bowels, it's only the uterus." In reality, the disease can affect almost any organ.

"I’ve got deep infiltrating endometriosis. My ovaries are fused, my uterus is fused to my rectum. I also have thoracic endometriosis, so it’s in my chest cavity too," she says. "I’m now waiting for chest surgery to treat the thoracic endometriosis."

"I’ve had many nights where especially during ovulation, I had to go to bed and not move. Just lay still. I thought, I’m not going to wake up in the morning because the pain is so bad."

The high cost of care

With NHS wait times at crisis point, many women face impossible decisions. Monica expects to pay around £15,000 for private pelvic surgery just to be eligible for follow-up treatment on the NHS.

"Many women go private, because that's the only way we get the care we deserve," she says. "I walked into a specialist’s office and just cried because he finally heard me."

The charity’s website points out that one in three UK women will experience a reproductive or gynaecological health problem. Yet five times more research is conducted into erectile dysfunction—affecting 19% of men—than into premenstrual syndrome, which affects 90% of women.

Monica Thomas

Building a supportive community

Determined to ensure no other woman suffers in silence, Monica founded Women’s Health Hope in Ipswich in July 2024, gaining charity status that December. It’s the UK’s first charity supporting women with both diagnosed and undiagnosed menstrual health conditions.

Their monthly support groups meet at Ipswich and West Suffolk Hospitals and offer a free, welcoming space for women to share experiences and access peer-led activities.

"Women often come to our groups hesitant, nervous. But by the end, they're sharing, they're crying—finally feeling heard," Monica says. "We can’t fix the healthcare system overnight, but we can support each other through it."

Attendee Alice Whiting says: "Going to the groups has helped me grow in confidence and feel supported on what was a lonely and scary journey. Meeting women going through similar things has been a real comfort."

Another participant added: "I felt comfortable, had fun and felt supported. We’re definitely planning on going back again."

Painathon: raising voices for change

Monica recently spearheaded the "Painathon" campaign at the London Marathon, placing women’s experiences visibly into the public eye. Posters along the marathon route drew a stark parallel between the 26-mile endurance test and the marathon-like wait for treatment.

"The voice board is impactful," Monica says. "It shows the reality women live with daily, making our pain impossible to ignore."

Each poster featured a woman living with chronic gynaecological conditions. Instead of race numbers, their bibs showed NHS wait times—some stretching over 1,000 days. The campaign aimed to raise £27,000, symbolising the 27,000 women in the UK who have waited over a year for care.

A call for systemic change

"There’s a lot of talk about women’s health, but we aren't seeing real change," Monica says. "Wait times are horrific, appointments cancelled last-minute. Women hold out hope for 18 months, only to hear 'you’re fine, it’s normal'."

What makes this more urgent is that Women’s Health Hope has done all this without a single grant or government contribution.

"I do this full time, but I don’t take a wage. I’ve fully funded the whole project myself. I just didn’t want money to be the reason women stayed unsupported."

Monica urges people to step up where the system won’t.

"We need sustainable support—funding that allows us to continue our work and expand our reach," she says. "Without it, we can't provide the necessary services for women struggling in silence."

To help Women’s Health Hope grow its reach and provide safe spaces for women facing long NHS wait times, please donate via Just Giving. Donations, no matter the size, make a real difference.

"When you live with a condition, you become an expert out of necessity," she says. "It's exhausting to constantly educate your doctors."

Monica’s hope is simple: no woman should feel unheard, unsupported or invisible ever again.

To learn more about Women’s Health Hope, visit womenshealthhope.com
Follow thoracic endometriosis specialist Francesco on Instagram @francesco_thoracic