New hope for women with endometriosis symptoms

"It's just this one thing that's holding me back," says Freya Baxter as she speaks about endometriosis.

The 22-year-old first went to her doctor about her symptoms a decade ago, but only recently received a diagnosis of stage 4 endometriosis, adenomyosis and aggressive polycystic ovary syndrome.

Endometriosis - which affects one in 10 women in the UK - is when tissue similar to the lining of the womb grows outside of it.

Freya, from Chilwell in Nottinghamshire, believes it is important women get diagnosed sooner and has welcomed new specialist scans designed to help speed up diagnosis at the Queen's Medical Centre (QMC) in Nottingham.

While studying at university, Freya says her symptoms became so severe that they had a significant impact on her mental health.

"It got to the point where I was considering taking my own life because of how bad this pain was, I felt like I was on my own and the only person going through this.

"You see all the other girls at university going out partying and having fun, but I couldn't do that, because I was in pain all the time."

According to Endometriosis UK, it takes an average of nine years and four months for a diagnosis.

Up until last month, patients seeking a diagnosis at the QMC received a routine 20-minute pelvic ultrasound scan which looked at the uterus, ovaries, and endometrium.

However, longer specialist appointments lasting 40 minutes have been introduced, allowing sonographers to examine additional areas where endometriosis can develop, such as the kidneys, bowel, and bladder.

They are designed to identify deep infiltrating endometriosis, helping clinicians plan treatment more effectively.

Deep endometriosis is also sometimes called severe, stage 4, or advanced disease. It refers to endometriosis that is deeper embedded in the abdomen and into structures in the pelvis and abdomen such as the bowel, bladder, nerves, and blood vessels.

Another sufferer of endometriosis, Olivia Noon-Wright, 23, from Underwood in Nottinghamshire, noticed something was not right at the age of 16.

After finding the courage to see her GP, she had surgery in 2024 and was diagnosed with stage 4 endometriosis. Unfortunately, the symptoms did not improve, and in July this year she had a second surgery.

"I had to take a £6,000 loan out to pay for the second surgery, because there was a 56-week wait on the NHS. I just couldn't wait that long," she says.

Meena Thomas Peto, 23, from Nottingham, welcomed the new ultrasound scans after a "lengthy process" getting a diagnosis.

She waited five years before being diagnosed with stage 4 endometriosis in 2022. Despite undergoing surgery, she continued to experience severe pain and required a second operation earlier this year.

"It started with just pain on my periods, bloating, sickness, tiredness, and as the condition progressed, it started to be around the entire month," she says.

"It was the week before, the week after. Any bit of activity resulted in pain. It became difficult to do everything."

Alex Butt, a QMC sonographer, is trained to carry out the specialist scans and says additional training allowed clinicians to carry out a much more detailed assessment for patients with suspected endometriosis.

"More deep infiltrating endometriosis can be quite subtle and in areas we wouldn't see in the routine scan."

The hospital receives about 1,200 requests each year for an endometriosis ultrasound scan but currently has capacity to perform only about 200 specialist examinations.

However, four more sonographers are expected to complete specialist training, increasing the number of patients who can access the service.

Other hospitals around he UK can also offer this type of scan.

Clinicians hope the expanded programme will reduce pressure on other hospital services and help patients receive a diagnosis and treatment plan sooner.

Consultant gynaecologist James Phillips added: "We looked at all of our women diagnosed with deep endometriosis and we found that, on average, they'd had at least two ultrasounds performed in the hospital beforehand which hadn't picked up any abnormalities.

"So by ensuring they get a good quality ultrasound at the beginning, they'll get an earlier diagnosis without needing to attend multiple appointments."

If you have been affected by any of the issues in this story, you can find information and support via BBC Action Line

Listen to BBC Radio Nottingham on Sounds and follow BBC Nottingham on Facebook, on X, or on Instagram. Send your story ideas to eastmidsnews@bbc.co.uk or via WhatsApp on 0808 100 2210.