Woman’s back pain turned out to be an incurable condition affecting all her major organs

Jennifer E. Engen

A woman’s chronic back pain turned out to be an incurable condition which had been affecting many of her major organs for years without her knowledge. Michelle da Silva Willis, 43, had suffered with back pain and stomach problems when she finally went to see her GP after putting it off for two years.

The former English teacher from Toxteth, was forced to take time off work after developing a “really painful lower back” and an unsettled stomach, which she worried could be ovarian cancer. Despite being in severe pain, Michelle worried she’d be seen as a “hypocrite” for taking time off work, after reminding students about maintaining good attendance and school, and didn’t see a doctor for another two years.

When Michelle’s partner Craig passed away in 2019, her symptoms worsened and she visited the doctor. When she eventually saw her GP, they suggested irritable bowel syndrome or a kidney infection could be causing her pain, but Michelle suspected it was something more serious.

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A scan in late 2019 revealed cysts on Michelle’s ovaries, but it took months to find out exactly what had been causing years of chronic pain, Liverpool Echo reports. Last summer, Michelle was diagnosed with endometriosis – an incurable 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.

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.

Dr Manou Kaur, a consultant gynaecological surgeon at Liverpool Women’s Hospital, using the da Vinci robotic system to assist in surgery

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 said: “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.

Should more be done to raise awareness of this condition. Tell us in the comments section

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.”

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