Southampton woman's battle for endometriosis diagnosis

Emily Robson haemorrhaged blood every month since she started her periods aged around 13.

During her first visit to her GP at Abbeywell Surgery in Romsey she says she was prescribed a contraceptive pill and sent on her way.

But her health quickly spiralled downwards as she would “vomit and almost pass out” every month.

“I would miss days at school because I was in so much pain, or I would be sat there bleeding through three layers of clothing in an hour”, Emily recalled.

The 27-year-old veterinary nurse has since embarked on a 14-year battle to be diagnosed with endometriosis, a condition where cells similar to the lining of the uterus grow outside the uterus.

She only got conclusive answers last year after moving GP surgery and has since filed a complaint with Abbeywell Surgery.

The surgery has since said patient care is a “top priority”.

'I felt so dismissed by doctors'

As Emily’s periods worsened and she was bleeding heavily for at least 10 days, she made the first of many trips to her GP.

On one occasion, she was told her symptoms would improve when she had a child.

“I was 14 when they said this, I was a child myself”, Emily said.

She attended several appointments in the four years that followed but the answer did not change: there is nothing that can be done.

Emily said: “I was told I was just unlucky.

“Eventually an ultrasound was done but the results were not recorded, so I was put on a different contraceptive pill.

“Two months later I was still suffering so I went back, and was put on another, new pill.

“In 2019 I was offered another vaginal exam but at that point I had a feeling it was endometriosis, and you can’t see that during an exam.”

Emily recently requested and was sent her medical records from Abbeywell Surgery, which showed in recent years they “finally suspected” endometriosis.

After countless request, she says she finally managed to get a referral with a gynaecologist who discovered that her uterus was “heart shaped” during an ultra-sound, a sign of endometriosis.

Emily Robson is keen to change doctors' approach to women's health after she was diagnosed with endometriosis after a 14-year battle (Image: Newsquest) Emily said: “This was completely missed by my GP surgery and two sonographers who I had seen previously.

“But I was still fighting with my surgery and had an incident one time with a female doctor who was super dismissive, and super patronising, to me when I was describing the pelvic pain I had.

“I left the surgery that day in tears and I broke down in front of my dad.

“I felt so dismissed and as though the female doctor was poking fun at me.”

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According to national charity Endometriosis UK, one in 10 women are affected by the disease from puberty to menopause.

Emma Cox, CEO of Endometriosis UK, said: “It takes almost nine years on average to get a diagnosis of endometriosis in the UK; it shouldn't.

“Without diagnosis there isn't access to management and treatment, and symptoms can impact on all aspects of life including physical and mental health, work and education; and the disease may progress.”

'I have control of my life back'

Last year, Emily moved to Hedge End and became a patient at Hedge End Medical Centre, where she “finally felt listened to”.

But she is keen to incite change at Abbeywell Surgery to help other women and girls.

Emily said: “Abbeywell has been completely negligent.

“I can’t really put into words how it feels to finally have the diagnosis.

“It’s like being in the Matrix; I’ve been told for years it’s all in my head, and I was not given the help I needed. I felt like I was insane.

“So having that diagnosis means I can tell my employer I have a proper diagnosis so reasonable adjustments can be made.”

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She added: “At last, I can say it’s not in my head, I am not making it up.

“It feels very empowering, and I have control back. I know what can help me and life is not just a big question mark over my head.

“I have asked Abbeywell for a formal apology and an explanation for why the doctors did what they did at the time, and the reasons behind it.

“I also want evidence of proposed help and change of how they can improve their practice for women and girls.”

'Patient care is a top priority'

A spokesperson for Abbeywell said they are in contact with Emily to address the issues she has raised.

They said: “We would also like to reassure our patients that we take complaints very seriously and have a robust procedure in place for anyone who is unhappy with the service they receive at our practice.

“Patient care is our top priority and we are grateful to all the feedback we receive that will help us to continue to improve.”