A spotlight on Endometriosis: A conversation about periods, stigma, and the importance of speaking up
Previous Account Director at JPA Health, now Policy Manager at Endometriosis UK, Rebecca Taylor speaks to us about the changes needed to improve patient care and the vital work Endometriosis UK is doing to help reduce the impact of endometriosis on patients.
Estimated to affect 10% of women and those assigned female at birth worldwide, endometriosis is a menstrual health condition, where cells like the ones in the lining of the uterus, are found elsewhere in the body. With each menstrual cycle, these cells behave as endometrial cells in the uterus normally would, by thickening, breaking down and bleeding. However, unlike the cells in the uterus that leave the body as a period, this blood has no way to exit the body and, therefore, becomes trapped, causing inflammation, pain, and the formation of scar tissue. It is estimated that around 1.5 million women and those assigned female at birth in the UK have endometriosis and the average time taken to diagnose the condition is eight years. Talking to Rebecca Taylor, we discuss why there are delays to obtaining a diagnosis, what their biggest unmet need is, and what the treatment options are for patients.
Considering how prevalent the disease is, why does endometriosis take so long to diagnose?
I like to present this answer as a series of barriers that individuals face when it comes to obtaining a diagnosis. The first barrier is individual awareness. Even though the prevalence of the disease is high, public awareness around the disease is low. Therefore, many who have been experiencing symptoms for years are unaware that they should be seeking medical care.
The second barrier is friends and family awareness; this is when those who are experiencing symptoms open up to a friend or a family member about their symptoms and are met with disregard. In this situation people will often hear “oh that’s just part of being a woman” and “it’s normal for periods to be painful”, resulting in them not seeking medical care, as they believe their symptoms to be “normal”.
The third barrier is healthcare professional (HCP) awareness, which occurs when those experiencing symptoms go to their healthcare provider who either dismisses their symptoms or investigates them for another condition that has similar symptoms, for example IBS. Endometriosis is a syndrome, where patients can experience a wide range of symptoms that are also common to other diseases and it can, therefore, be misdiagnosed. In addition to this, depending on how the disease presents itself, it cannot always be detected using scans, and in such cases a diagnostic laparoscopy (a form of keyhole surgery) is needed to confirm the disease. In the UK, the current pandemic related backlog in gynaecology and endometriosis specialist centres including diagnostic laparoscopy has also contributed to the delay in diagnosis. A new report from the Royal College of Obstetricians and Gynaecologists estimates that gynaecology waiting lists across the UK have now reached a combined figure of over 570,000 women, just over a 60% increase on pre-pandemic levels. However, whilst misdiagnosis and lack of access to gynaecology and endometriosis specialist centres contributes to this delay, really the biggest hurdle to achieving a diagnosis is lack of awareness, which is ultimately rooted in the harmful misconception, that periods are supposed to be painful.
It’s astonishing that in the UK, it takes on average, almost a decade to achieve a diagnosis. Once patients receive one, are there effective treatment options for them?
Several different therapies exist to treat endometriosis. The most common are hormonal treatments, pain relief, and surgery. Because endometriosis is a spectrum disease, patients can experience a wide range of symptoms and it is, therefore, impossible to say “what the most effective” treatment is. For those experiencing mild-symptoms surgery may not be necessary, whereas for patients who can no longer function on a day-to-day basis due to the pain, surgery may be their best option. Therefore, treatments should be prescribed on a case-by-case basis. For example, we had a woman approach us wanting to find out more about surgery waiting times in her area, as her surgery had been cancelled due to the pandemic. In the meantime, she had been prescribed some pretty heavy-duty opioids to manage her pain, but they made her feel very lethargic. As a stay-at-home mother of four who, as a result of all the lockdowns, ended up with all her children at home, daily life was demanding enough without medication side effects making her more tired. She was finally able to change treatment and get her previous energy levels back. Therefore, when it comes to treatments, we recommend patients and HCPs have an open discussion about what treatment approach is right for them. It is also important to note, that there is currently no cure for endometriosis, and that when diagnosed, only symptomatic treatments are available for the management of the disease.
As endometriosis is a lifelong disease, it must have a large impact on patient’s lives. What is the greatest unmet need for those affected by endometriosis?
Currently, the diagnostic delay is one of the greatest unmet needs for patients. Due to the time it takes for patients to obtain a diagnosis, many patients are left untreated for long periods. When symptoms are severe and left untreated, endometriosis can have a debilitating effect on all aspects of a patient’s life including struggling to go to school or work. Their social life is affected as they don’t have the energy or are in too much pain to leave the house, all of which can have a negative impact on a patient’s mental health, in addition to the physical symptoms that they experience. We had a volunteer, who suffered debilitating symptoms every month and it took her 15 years to get a diagnosis. For 15 years she was told the pain was “normal”, with doctors being completely dismissive of her symptoms. For cases like these, increased awareness of the disease in the healthcare setting is crucial in reducing diagnostic delays.
In addition to the diagnostic delays, there is a population of patients for whom the current treatment options are not effective. Therefore, even when patients receive a diagnosis, some can find themselves unable to manage their symptoms satisfactorily despite trying different treatment options. This illustrates how important it is to have further research into endometriosis to better understand the aetiology of the disease, so that curative treatments, in addition to better symptomatic treatments, can be developed.
You mentioned that increasing awareness of endometriosis is crucial for improving diagnostic delays and patient outcomes. How does Endometriosis UK work to address the unmet needs of patients and raise awareness for the disease?
Here at Endometriosis UK, we work hard to raise awareness for endometriosis across the UK. We work with media outlets, social media channels, and support groups to educate not only the public, but HCPs and decision makers as well. We work with MPs to ensure that the needs of patients are being accurately depicted at the policy level, working towards improving patient outcomes. We have worked with the Royal College of General Practitioners to develop a menstrual wellbeing toolkit, an evidence-based resource for general practitioners and other primary care clinicians to use when diagnosing, supporting, and managing the concerns of patients affected by menstrual health problems.
To support patients in the workforce, we also provide an “Endometriosis Friendly Employer Scheme”, which allows employers to confirm their commitment to developing a work environment and culture that enables employees with endometriosis to thrive at work. Through this scheme, we can provide guidance to employers on how best to support their employees with endometriosis.
In addition to the information, we have on our website, we have also recently launched a webchat run by trained volunteers, to provide a listening ear to patients looking for advice on how to manage their diagnosis and symptoms. Whilst our volunteers do not offer medical advice, they are there to support those who call in. Many patients come to us looking for understanding and compassion as well as practical information. Which is also why we have support groups all over the country. Endometriosis can have such a huge impact on a patient’s life, with a lack of understanding from the general public and healthcare practitioners, living with the disease can become very isolating. Putting patients in contact with each other and giving them a platform where they can be heard and understood, can help them manage their disease and make them feel less alone.
It seems Endometriosis UK do a lot to help patients manage the disease. On a wider scale, what actions need to be implemented to improve care for those that are experiencing symptoms or have been diagnosed with endometriosis?
Patients require accelerated access to treatment options. Because endometriosis takes so long to diagnose, patients must wait a long time before they are prescribed appropriate treatment options. One way to combat long waiting times is the implementation of a “working diagnosis”. When adopting a “working diagnosis” approach, physicians can treat patients, based on strong suspicion that they have endometriosis, whilst they wait for testing to confirm the diagnosis. This ensures that if patients must wait a long time before they can see a specialist, they are still able to be treated, allowing them to gain access to treatment and, therefore, reduce the symptomatic burden of the disease, much quicker.
Additionally, more streamlined, and effective diagnostic pathways need to be implemented to improve diagnostic timings for endometriosis patients. Reducing unnecessary GP visits, presentations to A&E and referrals to the wrong specialists will most importantly improve the patient experience, but also reduce both the time and money spent by healthcare providers. More training, awareness and support for primary care physicians will be needed to improve the diagnostic pathway for patients.
However, more generally, what really needs to change in both the public and healthcare setting, is to destigmatise the language used around periods and menstrual health and educate the public and clinicians about what is normal and what is not when it comes to periods. Whilst the spectrum of symptoms associated with the menstrual cycle varies significantly, periods that are so painful it renders people unable to function, are not normal. Patients should not feel embarrassed or shy when it comes to speaking up about their menstrual health. It is a natural biological function that can have a huge impact on an individual’s health and quality of life, if there are problems associated with it. Therefore, the general misconception that periods are “dirty” and are “supposed to be painful” need to be debunked, to encourage those experiencing pain or other symptoms to speak up about their menstrual wellbeing. Educating the public about what is and isn’t healthy can have a huge impact to empower patients to go speak to an HCP, should they be experiencing issues with their period.
What resources would you recommend to anyone that may be worried and/ or wants to get more information about endometriosis?
Endometriosis UK’s website is a great resource to start with. We have lots of information on endometriosis, including information on how the disease impacts the body, fertility, and pregnancy. Developed in collaboration with various healthcare practitioners, our information hub contains the latest information and resources aimed to provide guidance to patients on current treatment recommendations and offers strategies for the management of some of the associated symptoms of endometriosis.
For those experiencing symptoms, but are yet to receive a diagnosis, we also provide guidance on how to prepare for a consultation with your primary healthcare physician including keeping a pain and symptoms diary. This diary can be used to help with a diagnosis and can also be used by patients when submitting information for evidence, for example, when claiming for benefits, for work or school/university. We work to make our information available and accessible to everyone in the UK and encourage open conversations about periods and menstrual health in all settings. The more we speak up about the disease, the more we can do to end patient suffering, and end endometriosis.
Endometriosis can be a debilitating, life-long condition, that can affect not only the physical health but mental health of patients. Whilst many treatment options exist, patients are faced with a wall of dismissal and ignorance that prevent them from accessing adequate care in a timely manner. And for those who do not respond to existing treatment options, even after enduring the long process of achieving a diagnosis, they continue to be impacted by the disease, as there is no cure. More needs to be done to end the silence, to end the pain, and to end endometriosis.
At JPA Health, we understand the importance of speaking up about menstrual health and take the wellbeing of our employees seriously. Menstrual health should not only concern women and those who menstruate. We work to cultivate an environment that allows all our employees to thrive.
Speaking about her personal experience with endometriosis, JPA’s Managing Director Diane Wass said, “I remember as a teenager being in acute agony every month, lying on the floor with my feet up on the bed wishing for the next wave of pain to pass. I spent every month literally being sick with the pain, unable to sleep and unable to function. I continued to suffer into my late 30s in excruciating pain where many times I questioned whether I should go to A&E as the pain and bleeding was so extreme. It was only when I had seven miscarriages that the recurrent miscarriage clinic started to explore and discovered I had both extensive endometriosis and adenomyosis. Finally, I had two laparoscopies and a uterine artery embolisation that literally transformed my life. So many times, since then I have questioned how my life may have been so different if as a teenager somebody told me, no it is not okay to be in that level of pain and that you must get it investigated. It is key all of us listen and encourage women or those assigned female at birth at any age to seek medical advice and let them know that – no this is not just part of being a woman.”
Call to action
If you or someone you know has endometriosis, support can be found at https://www.endometriosis-uk.org/get-support. If you would like further information on the brilliant work Endometriosis UK does, please visit their website at https://www.endometriosis-uk.org/.