One woman said it was a common condition that many people don’t know ‘almost killed’ her.
Joanne Sheridan, 45, found herself on life support after emergency surgery which left her diagnosed with endometriosis. The “mild” and incurable disease affects approximately one in ten women. According to the NHS, these are tissues similar to the lining of the womb that grow elsewhere in the body, causing chronic pain and complications such as fertility problems, adhesions and ovarian cysts.
The “stabbing and stabbing” abdominal pains started when Joanne was 18, initially occurring mostly around her period before becoming more permanent and “excruciating” as she got older. Some days the Walton woman would crawl to the bathroom, but scans and tests revealed nothing during her multiple trips to the hospital in her late teens and twenties.
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During a visit to the doctor, she spotted a poster about endometriosis. She had never heard of it before, but recognized the symptoms and spoke to her doctor, who she said dismissed the idea. Even when she came in with difficulty breathing and a swollen stomach called an ‘endo belly’, Joanne said she was told to take paracetamol.
Joanne said she felt “stupid and insulted”, telling ECHO: “He didn’t take me seriously. I knew there was something really wrong with me, but he wasn’t listening. wasn’t well. Nobody wanted to listen to me.
It wasn’t until she was 26 that she was diagnosed with endometriosis. Joanne first discovered this when she woke up on life support three days after visiting a hospital seeking help. During the operation, doctors discovered she had endometriosis, with tissue so extensive that it had connected her organs and blocked her intestines, causing kidney failure and a buildup of “toxic fluid”. They removed seven and a half liters of fluid, cut out the endometriosis tissue and performed reconstructive bowel surgery to repair the damage.
The pain is better now – she’s no longer crawling on the toilet, 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 ever happened to “Joanne. But she still suffers from “severe exhaustion” and restless nights, and sometimes has to take deep breaths to overcome “that throbbing, throbbing pain”.
Surgery can be used to treat endometriosis, either with a laparoscopy to remove the endometriotic tissue or with a hysterectomy to remove the uterus, so Joanne knows she probably would have had surgery anyway. But, she said, “It wouldn’t have been so bad if they had investigated thoroughly, if they had operated sooner. What I experienced could have been avoided.”
Joanne hoped lessons would be learned from what happened to her two decades ago, but she feels ‘shattered’ reading recent stories of people who even now suffered from pain and complications for years before they don’t receive a diagnosis. She said: “It’s heartbreaking. It upsets me. I feel like crying. The last few days I’ve been really upset. I’ve had two restless nights because it upsets me so much that nothing has happened. exchange.”
She wants people to understand the disease and be aware of it, she said: “I know a lot of people get forgotten that it’s your period and it’s only for this week. It’s not no – it’s not just a week. It’s day after day, night after night.”
Dr Manou Kaur, a consultant gynecologist who uses robot-assisted surgery to treat endometriosis at Liverpool Women’s Hospital, previously told ECHO that awareness of the condition has improved since she specialized in the field ten years ago. But she said the public needs more education, and there needs to be more specialized training for medical professionals, so the complex and unpredictable condition can be detected and treated earlier.
She said funding for endometriosis research is limited because it is considered, medically, to be a benign, non-fatal condition. It’s not life-threatening like many cancers are, but “what it can do is have a massive detrimental impact on someone’s health and well-being,” says director Emma Cox. of the charity Endometriosis UK.
Emma said: “Being in severe, chronic pain and not being able to function properly has an impact on your whole life. Whether it’s when you’re in your formative years at school or early in your career, it will impact how you succeed in life through your studies and how you can start working.”
The CEO said health resources devoted to endometriosis were insufficient, 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 that gynecology waiting lists are facing the biggest increase of any medical specialty, according to at the Royal College of Obstetricians and Gynecologists.
She wants to see the UK government join Scotland’s goal of reducing the time it takes to get a diagnosis of endometriosis for those assigned at birth over eight to under one. Endometriosis UK is also campaigning for the establishment of ‘age-appropriate’ school education on menstrual health and menstruation, as well as a more organized effort to provide specialist endometriosis care across the country. .