Exclusive:'Women are suffering in silence': Campaigner's endometriosis petition following life-changing surgery
For years Vicky Taylor was told to live with crippling pain.
From missing school as a child as soon as she started her periods to battling horrendous symptoms as an adult, the 37-year-old healthcare professional from north Leeds knew her body was trying to tell her something was wrong.
But nobody would listen.
Little did she know it would take years, countless appointments and a stage four diagnosis of endometriosis to be finally heard.
Now after life changing surgery, Vicky is determined that her story will not end in silence.
She has launched a petition as part of a campaign to challenge the taboo around the condition that sees cells similar to the lining of the uterus found elsewhere in the body, which can cause debilitating symptoms.
Vicky is calling for better care and to ensure that other women are heard long before their lives are put on hold.
Speaking to the Yorkshire Evening Post she said: “I was very young but the warning signs for endometriosis were all there but it just wasn’t talked about or wasn’t even considered then.
“I just had to accept this.”
Her severe pain continued and it was followed by gastric symptoms including trouble going to the toilet.
She said: “It was clear there was something very wrong.”
It wasn’t until 2024 that she finally got the answers after a laparoscopy revealed she had stage four deep infiltrating endometriosis which had penetrated her bowel.
The diagnosis was a vindication of the challenges she had faced over the years in her quest for answers. At the end of last year she finally had surgery but she is determined to ensure that other women do not suffer in the same way she has.
She said: “There is still so much taboo surrounded by these conversations and a stigma that comes with the condition. We need to educate young people about their bodies and recognise when things aren’t right.
“I’m just one person from Leeds but I want to make a difference.”
She has launched a campaign with a petition calling for a number of improvements at Leeds Teaching Hospitals Trust, which is badged as a centre for excellence, to help improve the level of care offered to patients and reduce waiting times.
Among her recommendations are:
• A weekly operating list for both laparoscopic surgery and robotic surgery (in line with other BSGE centres which will drastically reduce the wait times currently affecting patients)
• A third consultant recruited to the team
• An additional endometriosis nurse recruited to the team
• A specialist pelvic physio team for endometriosis pain management as a treatment option on the NHS
• Reinstatement of a dedicated gynaecology ward for patient recovery after surgery
• Implementation of non-invasive (non-surgical) testing for endometriosis done at the very earliest point of contact into the service
• Further funding and resources to support the team with the additional pressures/influx of patients from out of the area
She said: “Women are suffering in silence”
“The endometriosis team is absolutely incredible in Leeds but it’s the support and funding that is letting this down.”
Since then she has spoken to campaigners across the country and is calling on local MPs and council chiefs to support her calls.
She added: “I’ve heard so many harrowing stories about people who are struggling with endometriosis as part of this campaign.
“It impacts every single part of your life and people can’t afford to wait for treatment.
“People are losing their uterus because of the wait and it is impacting fertility. There is a real health inequality and it’s not just from a gender perspective.”
Mr James Tibbott, lead clinician for Gynaecology at Leeds Teaching Hospitals NHS Trust, said: “Leeds is a specialist centre for endometriosis care with provisional accreditation from the British Society for Gynaecological Endoscopy (BSGE).
“This reflects the dedication and expertise of our staff and has contributed to a rise in referrals to the service. We understand how difficult and frustrating long waits for an appointment can be, and we are sorry for the impact this has on those living with pain or waiting for a diagnosis.
"We are committed to strengthening endometriosis care which has already included the introduction of complex robotic surgery and pioneering research, and many of the proposals in the petition reflect our ambitions for the service.
“We are actively exploring what can be achieved within current and future resources, and we will continue to work closely with commissioners and NHS partners to advocate for the investments that meet the needs of our patients.”