A guest blog for Endometriosis Awareness Month
“Endometriosis affects 1 in 10 women and those assigned female at birth, yet society all too often considers it a taboo" - Endometriosis Awareness
Kathleen King - endometriosis advocate, former chairperson of Endometriosis Association of Ireland, and medical scientist – tells us all about endo, why it matters and what to do if you’re affected.
March marks Endometriosis Awareness month, meaning we are surrounded by a flurry of social posts about endometriosis, yellow ribbons, empowering messages, endo-belly selfies and even photos of those who live at the mercy of its symptoms. Despite it affecting almost 200 million worldwide, endometriosis remains a little-known condition relative to diabetes, cancer or inflammatory bowel conditions. When I speak publicly about endometriosis, I am often met with blank faces. But when I describe the symptoms, the dawning realisation is often that they know someone who has those symptoms, and quite often they are suffering with no diagnosis or support.
The narrative around endometriosis has always been linked to menstruation and infertility - but as more speak up about the condition, we can see that it is no longer appropriate to consider this a disease affecting women alone. The accepted incidence of endometriosis is 1 in 10 women, but some who live with endo do not identify as women: cases are also recorded in trans males and, very rarely, in cis males. Endometriosis also has a huge societal impact. Relationships are affected, careers and life choices are put on hold or lost completely, and absenteeism (time lost from school or work due to symptoms such as pain or fatigue) and presenteeism (reduced productivity at school or work due to symptoms making it more difficult to concentrate or perform to your full ability) from education and work is very heavily associated with the condition.
In 2018, “What is endometriosis?” was the third most trending health related question on Google. Online health resources on endometriosis often report conflicting information due to infrequent updates and lack of references, and this contributes to more confusion and the perpetuation of misinformation. The explosion of social media accounts focused on endometriosis has led to a greater awareness of endometriosis and of those sharing their experiences; however, like all social media, it needs to be assessed for accuracy and relevance to your own circumstances. As part of a research project in 2019, I found that accurate information and the personal experiences of those living with endometriosis has the potential to inform diagnosis, treatment and lifestyle choices. Some may choose to conceive earlier, some may choose a particular surgeon, some may choose not to take a particular drug. For this reason, it is essential that trusted resources are used. In this study, the Facebook group “Nancy’s Nook Endometriosis Education Group” and those of the official endometriosis charities (Endometriosis UK, Endometriosis Australia, Endometriosis New Zealand and Endometriosis Association of Ireland) ranked highest in terms of accurate information and trustworthy resources. Worldwide, those living with endometriosis face a similar plight - delays in diagnosis, poor access to specialist centres and severe interruption to their quality of life. The average delay in diagnosis ranges from 7 to 12 years - this is often attributed to the lack of awareness amongst the general public and medical community alike. Those who present with symptoms under the age of 25 are more likely to be dismissed and face longer delays in their diagnosis. They are not believed, dismissed as attention seeking and told that this is “period pain”. They are frequently sent home with endless prescriptions for pain medication and hormonal suppression in the form of the contraceptive pill or Mirena IUS (Intra Uterine System, commonly known as the coil). Those who present over the age of 25 are likely to be referred (to a gynaecologist) more quickly, as there is an urgency placed on fertility and the ability to conceive. Here, they are faced with a choice - quality of life versus fertility. The hormonal suppression and pain medication regime is not compatible with trying to conceive.
It is difficult to access doctors with a strong interest in endometriosis. There is no internationally accepted definition of an endometriosis specialist, and nothing to stop one claiming to be so. Diagnosis of endometriosis is surgical, requiring a laparoscopy (key-hole surgery) to look inside the pelvic area to check for the presence of lesions. This is subjective, and many are dismissed when no disease is visualised. Experience, skill and advanced training in endometriosis surgery is required to be able to accurately diagnose, remove disease and support those with symptoms. Those symptoms are often linked to menstruation, and it is often tempting to therefore link it all back to the uterus, ovaries and periods. However, the scientific literature shows us that cases of endometriosis have been seen in those with no uterus, those who do not menstruate, and those who have had their ovaries and uterus removed. 10% of female foetuses in one study demonstrated endometriosis, which leads many to conclude that we are born with this disease in place, rather than attribute it to “backwards periods” or retrograde menstruation - where menstrual blood flows back through the fallopian tubes. Like all things endometriosis, there are many unknowns. There is a dearth of research, a scarcity of those truly interested in the disease and a lack of financial funding for those who are.
Once diagnosed, the options for treatment are inadequate and often focus on the suppression of menstruation. Endometriosis is a chronic inflammatory condition that is influenced by hormonal stimulation. Symptoms are not confined to mid-cycle and the period: many report persistent symptoms and relentless pain. Its association with menstruation may have done more harm than good - as many in the past were subjected to hysterectomy and ovarian removal in their early 20s and 30s as a futile cure. Repeated ineffectual surgeries to ablate the disease leaves many living in chronic pain and with their fertility destroyed.
While endometriosis is considered incurable at present, there are many who are living a positive life, free from symptoms. Over the last 22 years, I have seen women undergo excision surgery and use tools like pelvic physiotherapy, diet, exercise and mindfulness to improve their quality of life. Unfortunately, I have also seen women whose lives have been devastated by repeated surgeries, drastic hormonal suppressives and who have lost organs in an attempt to reduce their pain. My overarching recommendation would be to become a self-management expert, taking charge of your healthcare and healthcare team, choosing the treatment and adjuncts that work for you.
There are so many variables in life with endometriosis; you must research your condition, know it well. Know your own body and how you wish to proceed. In many treatments, there is a choice between fertility and quality of life. You need to decide what will work for you. Removing the lesions by excision can improve both, and systemic symptoms such as fatigue, gastrointestinal issues and bloating - “Endo Belly” - can be improved over time. Seek out recommendations from those who have had treatments; speak to those surgeons who perform large numbers of excision surgery, and always ask plenty of questions.
Endometriosis presentation varies, but there is one underlying truth: severe pain is not normal. If you are experiencing any symptoms, please speak with your doctor (change your doctor if necessary to be heard) and ask for a referral to a gynaecologist. Keep a symptom diary and bring information to help make your case – there are sources of reliable information signposted at the end of this blog. Speak to others in your family to see if there is a history of endometriosis. Do not give up, and remember you are not alone.
Learn more about endometriosis on https://www.endometriosis.ie/about-endometriosis/
List of local charities available on www.endometriosis.org
Nancy’s Nook - Endometriosis Education Group https://nancysnookendo.com/
What it really means to have endometriosis - Vital Health Endometriosis Centre - https://www.vitalhealth.com/endo-blog/what-it-really-means-to-have-endometriosis/
Understanding Endometriosis - Centre for Endometriosis Care - https://centerforendo.com/endometriosis-understanding-a-complex-disease/
Questions to ask your doctor - pre endometriosis surgery. Endometriosis Association of Ireland https://www.endometriosis.ie/questions-for-your-surgeon
Kathleen King, Endometriosis Advocate, former chairperson Endometriosis Association of Ireland, Medical Scientist.