Imagine knowing you have a health problem, visiting the doctor close to a dozen times to get some help, but being dismissed and not getting the correct diagnosis until EIGHT years later. This sounds like an absurd situation, but sadly it is commonplace for women diagnosed with endometriosis.
An international women’s healthcare brand is amplifying this issue with a new film that seeks to shock, educate and inform people of the importance of early diagnosis. ‘The Wait’, a new film released by INTIMINA gives voice to those suffering from endometriosis by featuring eight-year-old girls telling the stories of real women who suffered from the disorder, with their age symbolizing the average wait for a diagnosis.
In the film, the children speak the words of real adult women who spent years waiting and fighting for an endometriosis diagnosis. While the average wait for a diagnosis is eight years, several of the women featured experienced delays of much longer.
The campaign empowers and informs women experiencing similar symptoms, with one in 10 women worldwide diagnosed with the disorder. INTIMINA created ‘The Wait’ film as part of its ongoing Seen + Heard period positivity campaign. Seen + Heard aims to increase the visibility of menstrual wellbeing across the world, normalize conversations about menstrual health, tackle stigma and bias, and raise awareness of conditions like endometriosis – which see millions of women suffering in pain while their voices go unheard.
“We hope this film can create much-needed conversations about endometriosis and inspire change. It is unacceptable that people have to wait eight years just to get help and it’s important to remember that this is only an average: some people wait many more years, even decades of their lives in pain,” said Danela Zagar, INTIMINA Global Brand Manager.
A UK All Party Parliamentary Group Endometriosis inquiry into the disease surveyed over 10,000 people with endometriosis and found that over half (58%) visited their GP more than 10 times after presenting symptoms, but still no diagnosis was made3.
Further commenting on reasons behind the eight-year wait, INTIMINA Expert Gynecologist Dr. Shree Datta said: “Healthcare professionals may assume painful periods are normal, even when severe and needing pain relief. What’s more, it can be especially difficult examining young teenagers for endometriosis as the findings are not specific and the disease presents differently from person to person. As such it may take longer to refer women to the correct specialist for further investigation and treatment.”
Knowing it can be uncomfortable for many women to take the first step of speaking to a doctor about issues such as menstrual cramps or pain during sex, we spoke to Dr. Datta herself to get more insight into why endometriosis is so often overlooked, and how it plays into larger, systemic issues women face when it comes to the healthcare system.
Why is endometriosis still shrouded in so much uncertainly and stigma, despite so many women experiencing it?
Many people believe that periods are painful so women may take longer to realize their pain is unusually debilitating. They may have to be persuaded by friends or family to seek help and not many people understand what endometriosis is. Periods remain a difficult subject to discuss despite it being the 21st century, so women may not feel able to raise any period related issues to healthcare professionals.
As a result, it may take a long time to report symptoms to a doctor, when you’re not familiar with what constitutes “normal” menstrual cramps after just starting your period. It can also be uncomfortable speaking to a doctor about issues such as pain during sex, or to describe the symptoms clearly. It may be easier to paint a picture which suggests endometriosis as we get older, and we become familiar with the symptoms experienced regularly.
Do you believe some of the misdiagnosis stems from the systemic problem of some healthcare professionals not listening to women when they talk about pain?
Actually, I believe both women and healthcare professionals may assume painful periods are normal, even when severe and needing pain relief or the contraceptive pill. Many people may not understand the diagnosis of endometriosis and it can be difficult to examine young teenagers for endometriosis as the findings of endometriosis are not always easy to pinpoint. As a result, it may longer to refer women to a Gynecologist for investigation. Women may be sent to see a Urologist or Gastroenterologist first as the way in which endometriosis presents varies from person to person and doesn’t necessarily relate to the extent of disease.
“The Wait” is part of INTIMINA’s Seen + Heard campaign which aims to normalize conversations around menstrual health and tackle stigma. What are some of the main problems you see in your line of work?
We still don’t spend enough time talking about periods – for example, heavy or painful periods, so lots of women simply put up with their symptoms until they are no longer able to. I’m so pleased to be part of “The Wait” campaign as it raises awareness of endometriosis, but we need to make sure we keep the conversation going. I’d like to see more on health issues in the school curriculum, so that students are comfortable discussing personal issues such as periods and sex in an open forum. After all, periods are perfectly normal to have.
Has the pandemic exacerbated the delay in many women seeking care for endo?
Absolutely, we’ve seen a delay at every level because of the pandemic – from people feeling comfortable to come to the hospital to see us to waiting lists for operations to treat endometriosis. Once women are referred to a Gynecologist, diagnosis is usually by a key-hole operation called a laparoscopy, so women must be put on a waiting list for this, which takes time. Operations have risks, so often we’ll consider whether it’s better to treat presumed endometriosis first with medication, which is less invasive than a laparoscopy, but this is something we will discuss with each patient.
For someone who thinks they may have endometriosis and is unsure of how to advocate for themselves with their doctor, what advice would you give them?
Record your symptoms and your periods in a diary or app so that you can discuss them with your doctor. This should include any pain on having sex, opening your bowels, or urinating. If you’re not comfortable speaking to your doctor, maybe speak to a nurse or ask for another doctor in the first instance – it’s important that you feel at ease when discussing health issues. Ask to be referred to a specialist for further investigation and note down the impact of any treatments such as painkillers or the pill on your symptoms.