A teacher who suffered chronic pain every day worried she had ovarian cancer before being diagnosed with an incurable condition.
Former English teacher Michelle da Silva Willis, 43 and from Toxteth, worried she'd be seen as a "hypocrite" lecturing students on attendance while taking time off work due to a "really painful lower back" and an unsettled stomach. She put off visiting the GP until two years later when the doctor suggested irritable bowel syndrome or a kidney infection, but she suspected it was something more serious.
The symptoms robbed Michelle of intimacy with her partner Craig, and they got worse after he died in 2019. Later that year when a scan revealed a mass that turned out to be ovarian cysts. But it took until last summer to finally be diagnosed with endometriosis, a condition where tissue similar to the lining of the womb grows elsewhere in the body, sometimes causing fertility problems along with bleeding and chronic pain, particularly during periods.
READ MORE: Woman bedbound with pain denied diagnosis for a decade
Affecting one in ten people assigned female at birth in the UK, endometriosis is almost as common as breast cancer, but most people with the condition are undiagnosed. It takes an average of seven years from the start of symptoms to diagnosis, meaning some suffer much of their teens, twenties and even into their thirties before knowing the cause. Their symptoms are often dismissed as a normal painful or heavy period, or put down to other conditions.
It was only when Michelle met Dr Manou Kaur, a surgeon at Liverpool Women's Hospital, that the teacher was finally diagnosed with severe stage endometriosis, which infiltrated her bowel and bladder and attached her bladder to her womb. By letting Michelle tell her story and ask her own questions, Dr Manou changed her life.
Michelle, originally from Southampton, said: "Oh my god, it literally turned everything around. Manou listens really carefully. She's got the perfect balance between being compassionate, but telling you straight what's going on, which I think is quite rare for a surgeon at her level. I found people to be quite detached in previous experiences, but with her, she's warm and compassionate, you just feel like you totally trust everything she says. I'm so lucky that I got her. If anyone ends up in her room, they're lucky."
Like many people, Michelle is embarrassed to talk about endometriosis and its symptoms. According to consultant gynaecological surgeon Manou, there's "still kind of a stigma that surrounds" periods and menstrual health, which "makes it difficult for patients to come forward". But even when they do, the dots aren't always connected.
The doctor said a lack of awareness of endometriosis, among both healthcare workers and the wider public, is the biggest obstacle in diagnosing people with the condition. Manou told the ECHO: "It's a very difficult, complex disease. It has different subtypes and that can manifest itself in different ways and can cause a myriad of symptoms.
"Because of that, it may be difficult to recognise those symptoms and to interlink them together with each other. It not only has an impact on their physical wellbeing, but it affects a lot of other domains in their life like their work, their relationships, their mental health, self-confidence."
Medical teams are more aware of the condition's complexity and diversity in the decade since Manou started working with endometriosis patients, but she thinks more is needed. She suggested teaching teens about endometriosis and other health conditions in school, and giving more advanced training to surgeons.
The arrival of more advanced technology, like robotic-assisted surgery, allows surgeons to perform more 'accurate and precise' operations with shorter recovery times than patients would have after open surgery. Michelle was sitting upright, eating and drinking a day after surgery, and the pinhole incisions in her abdomen were so small, she isn't even sure where Manou removed the endometriosis tissue and her womb.
Michelle's pain is gone, but sometimes surgery isn't the answer, according to Manou. The problem is that little is known about the cause of the disease. Manou said: "It's considered to be a benign entity, and therefore, because it's not life threatening, there is not much funding going into it. As long as we don't have research, we won't be finding the cure for the disease. At the moment we are managing symptoms. We can treat it to a certain degree, but we do not know what exactly causes it, and if you don't know that, then it would be difficult to find a dedicated cure."
Gary Price, chief operating officer at Liverpool Women's NHS Foundation Trust said: "Robotic assisted surgery is making a big difference to our patients. We are really pleased to have the da Vinci robot at Liverpool Women’s Hospital. We have had the robot for just over a year, as well as improving and shortening recovery times after procedures for patients, the robot has also provided an opportunity for our staff to use cutting edge treatment and technology helping to provide a better experience for our patients."
