Often, when women approach healthcare professionals with concerns about their health, they’re downplayed or ignored, which can have life-changing implications. In fact, 52% of women feel like a “number” when seeking help from their GP. We have provided the tools you need to advocate for yourself.
Endometriosis - The “shameful secret”
Throughout September 2015, The Guardian newspaper ran a ‘Special Case Report’ on a condition known as Endometriosis.
The Guardian described the response they received as “unprecedented” with more than 600 women providing details of their story within a 24-hour period.
What is Endometriosis?
Endometriosis is a condition caused by tissue that is similar to the lining of the womb (the endometrium) growing outside of the womb. It is commonly found on the ovaries, the pelvis and the uterus, but it can also spread to other organs such as the bowel. In advanced cases, it can fuse organs together.
It is estimated that 10% of women worldwide are affected by endometriosis and around two million suffer from the condition in the UK alone. According to the NHS, most women are diagnosed between the ages of 25-40.
Endometriosis is a chronic condition that causes inflammation, painful periods, abnormal bleeding, chronic pelvic pain and fatigue. It can also lead to infertility and it is estimated that 50% of patients diagnosed with endometriosis are infertile.
The Guardian's report
The Guardian’s report saw women describe the pain from endometriosis as both debilitating and paralysing. After I read how one reader described how she felt her symptoms were like “some shameful secret,” I couldn’t help but wonder whether this stems from the fact that very few people understand the condition recent years, there has been a push from the British Society for Gynaecological Endoscopy to develop awareness and understanding of endometriosis and accredited centres in UK hospitals have been set up to provide specialist care for women living with the condition. Unfortunately, access to these centres is determined by location and not every patient will receive such specialist input.
The Guardian’s report highlights that whilst widespread understanding of endometriosis is limited, a vast amount of women are suffering for as long as 12 years before receiving a definitive diagnosis and appropriate treatment. A definitive diagnosis can only be made by a laparoscopic procedure which allows a gynaecologist to identify and if necessary, remove damaging tissue.
Endometriosis needs oestrogen to grow, so hormonal treatments that slow down or stop the production of oestrogen are commonly used to treat the condition. These include: , , and the coil. In some cases, a gynaecologist will recommend a hysterectomy procedure but this is not a definitive cure for endometriosis.
Mistreatment and misdiagnosis
By the end of the report, The Guardian concluded that endometriosis is “a silent source of unnecessary misery.” They stressed that women should always seek a second opinion if they are not receiving a definitive diagnosis or being given clear options explaining how the treatment offered will treat their symptoms.
It was refreshing to see that The Guardian chose to focus on a condition which is generally given very limited airtime in the media and I have no doubt that this will go some way in helping people understand the condition. However, until further investment is made in researching both the cause and effective treatment options, I fear we will continue to see cases of delayed diagnosis and doctors recommending extensive surgery such as hysterectomy procedures, rather than trialling more conservative measures.
How we can help
All the above information was correct at the time of publication.
Disgraced surgeon Ian Paterson is most well-known for performing negligent breast surgery. However, he performed many types of unnecessary and negligent operations on both female and male patients.
Often, incidents of medical negligence occur, even if patients flag problems to their doctor. You may not feel able to advocate for yourself, so we want to empower people that haven’t felt listened to by providing resources allowing you to be your own advocate.