A woman said a common condition many people don't know they have "nearly killed" her.
Joanne Sheridan, 45, found herself on life support after emergency surgery that led to her being diagnosed with endometriosis. The 'benign' and incurable condition affects roughly one in ten people assigned female at birth. It involves tissue similar to the lining of the womb growing elsewhere in the body, causing chronic pain and complications like fertility problems, adhesions and ovarian cysts, according to the NHS.
The "stabbing, shooting" abdominal pains started when Joanne was 18, initially occurring mostly around her periods before growing more permanent and "excruciating" as she got older. Some days, the Walton woman would crawl to the bathroom, but scans and tests revealed nothing on her multiple trips to hospital in her late teens and 20s.
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On one trip to the doctor, she spotted a poster about endometriosis. She'd never heard of it before, but she recognised the symptoms and mentioned it to her doctor, who she said dismissed the idea. Even when she went in with breathing difficulties and a ballooning stomach known as 'endo belly', Joanne said she was told to take paracetemol.
Joanne said she felt "stupid and insulted", telling the ECHO: "He wasn't taking me seriously. I knew there was something seriously wrong with me, but he wasn't listening. I was even crying to the receptionist, saying I wasn't well. No one would listen to me."
It took until she was 26 to be diagnosed with endometriosis. Joanne first found out when she woke up on life support three days after visiting a hospital looking for help. During surgery, doctors discovered she had endometriosis, with the tissue so extensive, it had joined her organs together and blocked her bowel, causing kidney failure and a build-up of "poisonous fluid". They removed seven and a half litres of fluid, cut away the endometriosis tissue, and performed reconstructive bowel surgery to repair the damage.
The pain is better now - she doesn't crawl to the toilet anymore, she's more mobile, and after three rounds of IVF, she had her now-15-year-old daughter, who is "the best thing in the world that's ever happened to" Joanne. But she still suffers "severe exhaustion" and restless nights, and sometimes has to take deep breaths to ride out "that shooting, stabbing pain".
Surgery can be used to treat endometriosis, either with a laparoscopy to remove endometriosis tissue, or a with a hysterectomy to remove the womb, so Joanne knows she would likely have had surgery anyway. But, she said: "It wouldn't have been anywhere near as bad if they had investigated thoroughly, if they'd have operated earlier. What I went through could have been prevented."
Joanne hoped lessons would be learned from what happened to her two decades ago, but she feels "upset" reading recent stories about about people who, even now, suffer with pain and complications for years before they get a diagnosis. She said: "It's heartbreaking. It upsets me. I feel like crying. The past few days, I've been really upset. I've had two restless nights because it gets me so upset that nothing has changed."
She wishes people understood the condition and were taught about it, she said: "I know a lot of people get fobbed off that it is your period and it's just for that one week. It isn't - it's not just the one week. It's day in and day out, night in, night out."
Dr Manou Kaur, a consultant gynaecologist who uses robotic-assisted surgery to treat endometriosis at Liverpool Women's Hospital, previously told the ECHO awareness of the condition has improved since she specialised in the area a decade ago. But she said the public needs more education, and there needs to be more specialist training for healthcare professionals, so the complex and unpredictable condition can be caught and treated earlier.
She said funding for endometriosis research is limited because it's considered, medically, to be a benign, non-life threatening condition. It isn't potentially fatal in the way many cancers are, but "what it can do is have a massive detrimental impact on someone's health and well being", according to Emma Cox, chief executive of the Endometriosis UK charity.
Emma said: "Being in severe, chronic pain, and not being able to function properly, has an impact on your whole life. If that's when you're in your formative years at school or early in your career, that will have an impact on how you succeed in life with your education and how you can start work."
The CEO said not enough healthcare resources are put into endometriosis, a legacy of the lack of research and credibility given to women's health. This lack of services has only been exacerbated by covid, with recent research showing gynaecology waiting lists facing the biggest increase of all medical specialities, according to the Royal College of Obstetricians and Gynaecologists.
She wants to see the UK government join Scotland's goal of reducing the time it takes to get an endometriosis diagnosis for people assigned female at birth from more than eight years to less than one. Endometriosis UK is also campaigning for the implementation of "age-appropriate" school education about menstrual health and periods, along with a more organised effort to provide specialist endometriosis care across the country.
