According to Endometriosis UK, the gynaecological condition that causes tissue to grow outside of the lining of the uterus affects 1 in 10 women in the UK. It’s known as the invisible disease because diagnosing it is not easy and different women experience it differently. However, certain symptoms recur across all categories. These include pain during menstruation and throughout the cycle, painful sex, as well as nausea and fatigue. Depending on where the endometriosis has grown, symptoms could also include painful bowel and bladder movements. 

To date, there is no known cure for this condition and its cause is also unknown despite the growing number of women found to suffer from it. Due to the lack of knowledge about endometriosis, treatment isn’t always successful and it can take years to find one that actually helps you manage your symptoms.

A Worrying Lack of Diagnosis

In addition to the 1 in 10 women who are diagnosed, many more are told that their symptoms are normal.

In my experience, it took 13 years, multiple hospital admissions, multiple doctors, and several contraceptive pills that severely impacted my mental health. My concerns were finally taken seriously when I visited a private gynaecologist. 

Before that, every NHS doctor’s appointment and hospital visit had a similar theme. I was met with a lack of understanding of and care for women’s health, and a lack of trust in my own instincts that something wasn’t right with my body. One doctor told me: ‘I’m just one of those women who suffer badly with periods and it’s something I have to learn to live with’. 

I didn’t know what was causing the monthly agony that left me unable to walk, throwing up and fainting because of the pain. The medical professionals I trusted dismissed my concerns as an ordinary female complaint. 

Fortunately, I’m not alone in my experience. The Department for Health and Social Care (DHSC) carried out a survey called ‘Women’s Health Let’s Talk About It’. The survey involved around 100,000 people in England sharing their experiences with the healthcare industry. 

The survey results showed that around 71 per cent of women felt or were perceived to feel comfortable talking to healthcare professionals about gynaecological conditions. However, more than 4 in 5 women felt that they had not been listened to by healthcare professionals. 

The following concerns were cited:

  • Healthcare professionals failing to take symptoms seriously and/or dismissing them
  • Women having to advocate for themselves in order to receive a diagnosis over multiple visits, months and even years
  • Women experiencing limited opportunities to discuss or ask questions about the treatments available and having their preferences ignored

The above examples strongly echo my own experience and I suspect, that of many more women like me. 

In fact, women across the UK have shared their stories with Endometriosis UK. Each story has something in common. Namely, the lengthy diagnosis time and the lack of information available on the condition. One woman waited 14 years for a diagnosis, whilst another was given a diagnosis and no further information on what it meant for her moving forward. 

NHS Vs Private Care

The case stories don’t specify whether a lack of diagnosis occurred whilst seeking care with the NHS or in private healthcare facilities. However, for me, there was a stark comparison between the medical attention I received with the NHS and the private hospital I eventually attended.

When the pain started coming more frequently and outside of my monthly period, I took matters into my own hands. I found a private hospital on the recommendation of a friend and asked to be referred by my GP, which meant I didn’t have to pay for the consultation and tests. 

During the appointment, I explained my history and symptoms and the consultant immediately asked if I’d heard of endometriosis. I sighed, holding back tears of relief that the first words out of their mouth were not: ‘We can put you on the pill’. I felt like I had been handed a lifeline. 

Later that year, I underwent an exploratory laparoscopy. It was so nerve-wracking. In the months leading up to the operation, I questioned my instincts as so many doctors had done before. I worried that they wouldn’t find anything and that I wouldn’t receive any answers.

However, when I came around from the operation, the surgeon confirmed that I did indeed have endometriosis. 

Moving Forward

After 12 years of trying through the NHS, I finally got a diagnosis. Some people are not so lucky though. There are roughly 190 million women across the globe with this condition and possibly many more who cannot get diagnosed because of a lack of understanding and prejudice from certain medical professionals.

The NHS has been a stable pillar of this country since its founding in 1948, providing treatment to anyone who needs it. The Covid pandemic has seen it rise to the challenge despite ongoing funding and bureaucracy concerns. However, it would be naive and harmful to ignore its obvious flaws. The lack of funding leads to a lack of sufficient training and consequently, a lack of support for overstretched NHS staff. This, in turn, affects patient care with staff burnt out and lacking the resources or time (often both) to investigate serious conditions that are not well-known. In the case of endometriosis, women can be left without a diagnosis for up to eight years. 

At some point, we need to realise that being overworked and underfunded is not an adequate excuse for women’s health and wellbeing to consistently be overlooked. In the case of endometriosis, this lack of support is costing the UK taxpayer 8.2 billion a year in treatment, loss of work and healthcare costs.

Arguably, there is also a systemic issue of misogyny that underpins the healthcare system in the UK and plausibly elsewhere. Until this is fixed, nothing will ever change. Women are being forced to fight for their health against a wall of disbelief and discrimination because of ignorance. It’s time we faced the facts and acted on our intuition.

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