6 October 2021
Written by Dawn Teh
For many women, period pain is considered a normal part of life that one has to live with. But what many don't realize is that it could actually be a sign of a common chronic disease affecting 1 in 10 women called endometriosis.
It's a condition where tissue that usually lines the uterine wall gets implanted outside the uterus and sometimes on other organs like the bladder or intestine. The misplaced tissue is often referred to as endometrial lesions. This causes inflammation and results in its most common symptom, which is pelvic pain that can occur before, during, or after menstruation.
Other common symptoms of endometriosis include:
Heavy bleeding during periods
Infertility (affects 30-50% of those with endometriosis)
Pain during or after sexual intercourse
Bowel or urinary issues (including pain)
It can affect any woman who has started her menstrual cycle, but symptoms can persist even after menopause.
For some, these symptoms of endometriosis can be so severe that it affects overall quality of life in terms of physical, sexual, and mental health. The recurring pain has been associated with an increased prevalence of depression as well as reduced engagement in physical and sexual activity.
Another study has found that women lose an average of 6.3 hours of workplace productivity and 2.5 hours of household productivity a week due to endometriosis-related symptoms. A 2002 estimate suggests that the economic burden of the condition in the US is between $18 to 22 billion annually.
But despite how common the condition is and its potentially debilitating symptoms, many women go through life without even knowing they have endometriosis. Only 38% of those with suspected symptoms decide to speak to their GP about it, while it's estimated that 6 in 10 cases go undiagnosed.
For those that are fortunate enough to get a diagnosis and treatment, the journey to getting to that point can be long and arduous. A qualitative study conducted in the US, UK, and New Zealand has found women with endometriosis experience an 8.5-year diagnostic delay.
Why this happens is due to a combination of medical and cultural reasons.
Firstly, diagnosing endometriosis isn't straightforward. With symptoms varying widely from person to person in terms of type and severity, physicians can often mistake it for other chronic diseases. A US survey found that 75.2% of endometriosis sufferers were initially misdiagnosed as either having another physical disorder or mental health issue.
Another issue is that the only way to truly confirm that someone has the condition is through laparoscopy — a keyhole surgery. What happens is that the physician will make a small incision in the abdominal or pelvic region and remove the endometrial tissue for biopsy.
Unfortunately, the financial barrier for a woman to even receive this surgery is high. One US survey conducted in 2020 found that 23% of women without insurance paid up to $8,000, while 42% with private insurance paid between $500 to $3,999.
For many women, the thought of undergoing costly surgery that may not yield any confirmation of a diagnosis is enough for them to choose to live with the pain.
And while some experts are currently advocating for non-invasive methods of diagnosing endometriosis, no standardized way of doing this has been formulated yet. Part of the reason for this is the lack of research and treatment funding which stems from perceptions that endometriosis is not a "serious" condition — both within the medical and wider public community.
Why is this debilitating disease being cast off as a mild sickness in medical circles? Experts explain that it's because of the cultural normalization of endometriosis' most common symptom — period pain.
For girls and women around the world, most are acculturated to think that any pain during menstruation is normal. If there are doubts that something may be wrong, the default is to assume it's something to be lived with instead of investigated.
Shame and stigma also surround the topic of menstruation in general, which prevents women from talking about it. One Dutch study found that while 71 to 85% of women experience some form of menstrual symptoms that interfere with daily life (like pain, tiredness, or mood swings), less than half speak to loved ones about it.
This tendency to normalize period pain has also led to a lack of public awareness of what endometriosis even is and what symptoms to look out for. One UK study indicates that about only 8% of 15 to 19-year-old girls know about endometriosis.
This combination of a lack of knowledge and societal pressure to normalize menstrual pain prevents women from seeking help early. One European study found endometriosis patients wait for an average of 2.3 years between the onset of symptoms before consulting a doctor.
Also, the earlier that one starts experiencing endometriosis symptoms, the greater the hesitancy to seek medical help. A US survey found that two-thirds of the 4000+ respondents who reported experiencing symptoms in adolescence waited almost 3 times as long as adults before speaking to a doctor about it (6 vs. 3 years).
If there was more education and less playing-down of symptoms, maybe more women will be empowered to look into their menstrual health concerns.
To make matters worse, the lack of understanding of endometriosis is pervasive in primary health care settings as well. Many women reported in one study that their symptoms were often "dismissed" or described as simply being on the extreme of normal by physicians.
Because of this, many doctors choose to go down the route of symptom management like pain relief or hormonal medication without any formal diagnosis.
For those that insist on finding an answer to their debilitating symptoms, pursuing the issue takes time and patience. A US study found that 23.5% of endometriosis patients see 5 or more physicians before receiving a diagnosis. And the more physicians patients saw, the longer the diagnostic delay. Those that only saw 1 to 2 doctors received a diagnosis in 1 to 2 years, while this increased to 7 to 8 years for those that saw 5 to 9 physicians.
Time and again, women are being bounced around the healthcare system, only to get their endometriosis symptoms invalidated by the doctors that are meant to help them. And this isn't just due to a lack of training in physicians. The history of how endometriosis has been medically conceptualized over the decades reveals a culture of patient-blaming and sexism.
According to The Endometriosis Association, there were pervasive myths surrounding what causes endometriosis and the most effective treatments for it in the 1980s. For example, it was thought that the condition was rare and only affected "career women", while the best cures were pregnancy or a hysterectomy to remove the uterus.
Real-life accounts from various women also reveal a consistent pattern when seeking help for endometriosis. Many are often met with suggestions that they are simply over-sensitive, are using their symptoms to gain attention, and are in need of mental health treatment instead.
One survey of 4000+ US women found before receiving an endometriosis diagnosis, 63% had been previously told by doctors that they had no medical issue. And more than half (59.6%) felt that their symptoms were not taken seriously by their doctors.
The repeated suggestion that "it's all in their heads" leads many to develop feelings of embarrassment and incompetence in dealing with their symptoms. As a result, isolating from society and suffering in silence becomes the best alternative to treatment for most.
For those that already have received a diagnosis, this can bring some relief to have their experiences validated. But this is only the beginning of their battle, as an even bigger issue remains with finding a treatment that will actually work to abate symptoms.
Currently, there is no cure for endometriosis. So current treatment options are only aimed at reducing or managing symptoms. For milder cases, the first medications of choice will be non-steroidal anti-inflammatory drugs (NSAIDs) and/or oral contraceptives. The latter helps to suppress menstruation, reduce bleeding from current lesions, and prevent new endometrial tissue from implanting outside the uterus.
For those with more severe symptoms of infertility issues, surgical removal of the endometrial lesions is usually the next recommended step. For 60-80% of cases, this option is effective in easing symptoms. But unfortunately, the chances of new lesions recurring post-operation remain high — 29 to 56% after 2 years and 53% after 5 years. These rates significantly improve if there is ongoing medical treatment (like hormone therapy) after operation.
As a last resort, some women choose to undergo a hysterectomy to remove the uterus. However, even in such instances, pelvic pain and other symptoms can still persist.
The lack of a cure for endometriosis may be attributed to it being a complicated disorder. But experts are saying that the limited treatment options are because we still don't understand enough about the condition.
Currently, there are several theories about what causes it. The earliest theories point to retrograde menstrual flow as the leading process by endometriosis develops. This is where shed uterine lining goes back into the fallopian tubes and pelvic area instead of out of the body. But experts are now questioning the viability of this theory. With a large percentage of women experiencing retrograde menstruation (70-90%), the prevalence of endometriosis should be much higher.
Now, researchers are exploring other potential causative factors including genetics, environments, and immune system dysfunction. In particular, the immunological model of the disease seems to be showing promise.
The latest studies suggest that a variation within a specific gene occurs more regularly for women with endometriosis. This gene is responsible for the production of a protein called neuropeptide S receptor 1 (NPSR1), which plays a role in nerve signalling and inflammation (an immunological response). Animal studies suggest that reducing NPSR1 activity can help reduce inflammation and pain. This opens up the possibility of targeting the NPSR1 protein in treating endometriosis.
Research like this is advancing the care physicians can potentially provide to those with endometriosis in the years to come. But they still face a significant barrier to translating their findings into real-world application — funding.
To be fair, the US government has taken a step forward in this regard as federal research funding has increased from $13 million in the 2019 fiscal year to $26 million in 2020. This was after much campaigning done by Iowa Congresswoman Abby Finkenauer — who has also been living with endometriosis since her teenage years.
However, if we compare it to other chronic diseases, one can still clearly see where endometriosis sits in terms of public health priorities. The prevalence of Alzheimer's Disease is similar to endometriosis, but it received $3.1 billion in annual research funding from the National Institutes of Health (NIH). While Parkinson's Disease, which affects 1 to 2 people in 1000, received $242 million in federal research.
Researchers and health professionals themselves are advocating for more investments to be made into doing more for those with endometriosis. As Sawsan As-Sanie, M.D., MPH, who is a gynaecological surgeon specializing in endometriosis, has said in an interview with the University of Michigan Health Lab: "For the last two decades, there have been minimal changes in treatment options due to inadequate funding and research in this area. But with aggressive research, we have hope to change this. There are many inflammatory pathways that have yet to be targeted — presenting great opportunities to further research and move the needle in treatment."
Endometriosis and the people that suffer from it need to be seen, heard, and validated. The denial of its existence is so entrenched in the system that there isn't even a Medicare code of excision surgery to remove endometrial lesions.
While strides have been made in the past decades in terms of understanding its prevalence and treatment options, it's far from where it should be given our advancements in medicine.
More public awareness campaigns need to be rolled out, so women can better identify if their symptoms warrant a trip to the clinic. Primary care physicians also need more education about recognizing endometriosis or when to refer to a gynaecologist.
But perhaps the most important and fundamental change that needs to take place is the societal assumption that all period pain is normal. When we start treating endometriosis like any other medical condition, only then can real advancements be made in research, treatment, and individual rights to receiving dignified care.
The author, Dawn Teh, is a health writer and former psychologist who enjoys exploring topics about the mind, body, and what helps humans thrive.