Let's dive into the intersection of women's sexual and reproductive health rights through Endometriosis:
Women's sexual and reproductive health rights, particularly in the context of conditions like endometriosis, highlight a crucial yet often overlooked intersection of healthcare and social equity. Endometriosis affects approximately 1 in 10 women globally, yet access to adequate menstrual care and health professionals remains a significant barrier. The lack of access to menstrual products is too an interconnected pressing issue, with around 500 million women worldwide facing inadequate menstrual hygiene resources. This shortage not only affects hygiene but also contributes to a cycle of poor menstrual health that can exacerbate conditions like endometriosis, leading to severe reproductive health complications and infections.
We can foster better reproductive health outcomes globally by prioritising comprehensive access to menstrual products and education. This approach calls for more equitable healthcare systems that specifically address the sexual and reproductive health issues faced by women and girls. Ensuring adequate access to menstrual care is the first step toward a world where every woman and girl can take control of their health, live with dignity, and thrive without stigma, pain, or preventable health issues holding them back.
Explore our 3-episode series on Endometriosis below. We discuss how the intersection of women's sexual and reproductive health rights and endometriosis shapes healthcare access, the challenges faced by women worldwide, and the steps needed to build a more equitable and supportive health environment for all.
Understanding Endometriosis: A Multifaceted Challenge
Endometriosis is a pervasive yet often misunderstood medical condition that affects approximately 10% of women and individuals assigned female at birth worldwide. Despite its prevalence, the disease is underdiagnosed and underfunded, leaving millions to grapple with its physical, emotional, and societal repercussions. Our People Said will be delving into the complex symptoms of endometriosis, the range of available treatments, and the cultural and systemic barriers exacerbating diagnostic delays, drawing on insights from medical expert Tatum Childlaw, who has extensive experience addressing this condition, through our series Understanding Endometriosis. Tatum Childlaw’s observations highlight the urgent need for awareness, systemic reform, and equitable care to alleviate the burden of endometriosis.
“Endometriosis isn't rare; awareness and accountability are” - Our People Said
Endometriosis affects approximately 1 in 10 women of reproductive age, meaning around 200 million women and girls worldwide suffer from the condition.
On average, there is a 7-10-year delay from the onset of symptoms to diagnosis, largely due to a lack of awareness and proper medical training among healthcare providers. Nearly 50% of women with endometriosis are initially misdiagnosed with other conditions such as irritable bowel syndrome (IBS) or pelvic inflammatory disease (PID), underscoring the challenge in obtaining a proper diagnosis. About 30-50% of women with endometriosis experience infertility, and the disease is one of the top three causes of female infertility globally
SYMPTOMS AND LIFE-ALTERING IMPACTS:
Endometriosis occurs when tissue similar to the uterine lining grows outside the uterus, leading to chronic inflammation, scarring, and pain. This often manifests in a range of debilitating symptoms that vary widely among individuals, complicating the diagnostic process. Tatum Childlaw noted during our interview that this variability frequently leaves patients unheard and untreated, as the medical community may fail to recognize the full spectrum of the disease.
Figure 1.1
This diagram visually compares a normal uterus to one affected by endometriosis, illustrating the key anatomical differences and the condition's impact. On the left, the normal uterus is shown with its distinct structures, including the fallopian tubes, ovaries, cervix, vagina, and the endometrial lining, which naturally lines the inside of the uterus and sheds during menstruation. The reproductive system appears healthy, with all tissues and organs functioning as they should. On the right side, however, the uterus affected by endometriosis reveals the growth of endometrial-like tissue outside the uterus, depicted as dark spots scattered across the outer uterine wall, fallopian tubes, ovaries, and surrounding pelvic areas. This abnormal tissue growth does not shed during menstruation, leading to inflammation, scarring, and adhesions in the pelvic cavity. By contrasting the normal and affected uterus, the diagram highlights how endometriosis extends beyond the uterus, disrupting the reproductive anatomy and causing widespread pain, fertility issues, and other symptoms. These abnormal tissue deposits outside their intended location demonstrate the invasive nature of endometriosis and its potential to impair both the function and structure of the reproductive organs. This visual representation is an effective way to communicate the physical manifestation of endometriosis and its impact on the body.
SYMPTOMS:
Chronic pelvic pain is one of the most common and devastating symptoms, often exacerbated during menstruation. This pain, which can radiate to the lower back or legs, frequently disrupts daily life, leading to significant physical and emotional tolls. Painful periods (dysmenorrhea), resistant to over-the-counter medications, leave many unable to work, study, or socialize, creating cycles of isolation and diminished quality of life.
Other symptoms, such as dyspareunia (pain during or after intercourse), infertility, and gastrointestinal distress mimicking irritable bowel syndrome, further compound the condition's impact. Endometriosis is one of the leading causes of infertility, affecting up to half of those with the condition. As Childlaw emphasized, infertility not only imposes financial and emotional burdens but also deepens societal stigmas about womanhood and reproduction. Moreover, endometriosis patients frequently report fatigue and emotional distress, exacerbated by chronic pain and hormonal imbalances, leading to anxiety, depression, and feelings of helplessness.
Childlaw stressed that endometriosis symptoms are not "just bad periods." They represent a significant public health issue, often trivialized or dismissed by healthcare providers and society at large. Many patients endure years of misdiagnoses or are told that their pain is a natural part of being female, delaying critical care and exacerbating their suffering.
“I think about two-thirds of people who experience dysmenorrhea, which is painful periods to a certain severity, are often diagnosed at some point with endometriosis. So essentially that is a significant amount of people who exhibit symptoms… this is a chronic disease… Often chronic diseases are not always looked at, from a public health lens, when it's affecting this much of the population... There are a lot of implications for these, for a disease like endometriosis.”
Tatum Childlaw
TREATMENT: Limited Options and Ongoing Challenges
There is currently no cure for endometriosis, and treatment focuses primarily on symptom management. As Childlaw explained, treatment approaches vary widely depending on the severity of the disease, the individual's specific symptoms, and their reproductive goals.
Pharmacological Treatments:
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Pain management often begins with nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, though these provide only minimal relief for severe cases.
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Hormonal therapies aim to suppress menstruation and slow the progression of endometrial lesions. Options include birth control pills, patches, or rings, which regulate hormones and can reduce symptoms for some women.
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Hormone therapy can be effective for managing symptoms, but it doesn’t eliminate existing lesions or work for everyone
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Progestin-only treatments, such as intrauterine devices commonly known as IUDs or implants, can slow the growth of endometrial tissue.
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GnRH agonists or antagonists, are medications that create a temporary menopause-like state to stop estrogen production, but they come with significant side effects, like bone loss, and are often used for short-term management.
Innovative Pain Management devices also exist to help reduce pain for those with endometriosis. For those seeking non-surgical pain relief, TENS devices offer a new approach. These devices use transcutaneous electrical nerve stimulation (TENS) technology to block pain signals to the brain, providing drug-free relief from endometriosis-related cramps. Portable and easy to use, it’s an excellent option for women looking for a pain-relief alternative to medication.
When navigating treatment options, it’s vital to consult with a qualified endometriosis specialist. Organizations like Endometriosis Australia, EndoFound, and Endometriosis UK provide valuable resources, from specialist directories to support networks.
Surgical Interventions:
Laparoscopic surgery, regarded as the gold standard for diagnosing and removing endometrial lesions, can offer temporary relief but is not a definitive solution. It is important to note the high rates of recurrence following surgery, with many patients undergoing multiple procedures without lasting results.
Laparoscopy and Deep-excision:
Laparoscopy is a minimally invasive surgical technique that allows doctors to see and treat conditions inside the abdomen through small incisions. During laparoscopy, a camera is inserted to guide the surgeon, who can perform various procedures, including excising, meaning cutting out, or ablating, meaning burning away, endometriosis tissue.
Deep-excision surgery is a type of laparoscopy, but not all laparoscopies involve deep-excision. However, deep-excision surgery goes a step further than laparoscopy. While standard laparoscopy might trim the plant at the surface, deep-excision surgery involves carefully cutting out entire endometriosis lesions, including the tissue embedded below the surface, which can be crucial for long-term relief. Studies show that patients who undergo deep-excision surgery have a significantly lower risk of recurrence compared to those who have only superficial tissue removed.
Cold-excision:
Surgeons sometimes use heat-based methods, such as lasers or electrocautery, to burn and remove endometriosis lesions. While these methods can effectively target surface-level endometriosis tissue, they often fail to address the deeper roots of the disease embedded in the underlying tissue. This incomplete removal can lead to the recurrence of symptoms and the need for additional surgeries over time. Moreover, heat-based techniques carry the risk of damaging surrounding healthy tissue due to the thermal energy involved, which can cause scarring and complications.
Cold-excision surgery, on the other hand, is a less invasive means of endometriosis treatment as it minimizes damage to healthy tissue while achieving a more complete removal of endometriosis. In this procedure, surgeons use precision tools, such as fine scissors or specialized surgical instruments, to carefully cut out the endometriosis lesions in their entirety, including their deeper roots. Unlike heat-based methods, cold excision allows the surgeon to identify the exact boundaries of the diseased tissue and remove it without relying on burning, which can obscure visibility and cause residual damage. This meticulous process ensures that both surface-level and deeply infiltrating endometriosis are excised, significantly reducing the likelihood of the disease recurring and improving long-term outcomes for patients.
Ablation and Cauterisation:
Ablation and cauterisation are heat-based methods we mentioned earlier, involving burning tissue. Statistics show that up to 60% of women who undergo ablation or cauterisation may experience a recurrence of symptoms within a few years. This is because these techniques often fail to remove the deeper layers of endometriosis, allowing the disease to persist and potentially cause more pain. Moreover, the high heat used can lead to scar tissue formation, which might add to discomfort.
Hysterectomy:
Finally, let's address a common myth: that a hysterectomy— meaning the removal of the uterus—can cure endometriosis. While a hysterectomy might be necessary in certain cases, it is not a cure for endometriosis. Research indicates that 20-30% of women who undergo a hysterectomy still experience endometriosis symptoms afterwards. This is because endometriosis often affects areas outside the uterus, such as the ovaries, bladder, or intestines and in life-threatening cases, the lungs and diaphragm.
That said, many women with extreme endometriosis turn to hysterectomy as a last resort because their pain is truly unbearable, often described as life-altering and debilitating. For these women, the condition can dominate every aspect of their daily lives, making even basic tasks like standing, walking, or sitting for extended periods excruciating. Chronic pain is often compared to being stabbed or burned from the inside, and it can persist even with painkillers, leaving women physically and emotionally drained. In severe cases, lesions and implants can grow extensively within and around the uterus, binding organs together, causing heavy and prolonged menstrual bleeding, and contributing to symptoms like nausea, bowel issues, and severe fatigue. This extensive growth can render other treatments, like medication or conservative surgeries, less effective or completely ineffective.
Choosing a hysterectomy is not a decision made lightly—it often comes after years, or even decades, of battling relentless pain, ineffective treatments, and a significant reduction in quality of life. While it is not a cure, as endometriosis can still exist outside the uterus, it may be necessary for women whose disease has caused significant damage to the uterus and surrounding organs. If a hysterectomy is being considered, it’s essential to consult with an endometriosis specialist to thoroughly evaluate the risks and benefits and explore complementary treatments for managing symptoms beyond surgery.
Emerging and Alternative Therapies:
While traditional treatments remain the cornerstone of care, alternative approaches, such as acupuncture, pelvic physical therapy, and dietary modifications, are gaining traction. Despite growing anecdotal evidence supporting these interventions, there is an emphasized need for rigorous scientific validation.
Fertility Treatments:
For those struggling with infertility, assisted reproductive technologies such as in vitro fertilization (IVF) may be the only viable option. However, these treatments are prohibitively expensive and inaccessible to many, further highlighting the inequities in endometriosis care. Childlaw emphasized the importance of a patient-centred, multidisciplinary approach, advocating for greater collaboration between gynecologists, pain specialists, mental health professionals, and reproductive endocrinologists. However, systemic barriers often limit access to such comprehensive care.
Cultural Stigmas and Systemic Barriers
Endometriosis is deeply intertwined with societal attitudes toward menstruation and women’s health. On average, it takes 10 years for individuals to receive a formal diagnosis, a delay fueled by cultural stigmas, gender bias in medicine, and widespread ignorance about the disease.
“It can have like a 7 to 10 year, maybe even they've broadened that to like 6 to 11-year range of an average delay to diagnosis. And so that can impact someone's life while they're waiting to figure out what's going on with their body. The sooner we start education about these kinds of things, the better and more informed and more accessible care and treatment can become when people start identifying what is normal menstruation and what is potentially abnormal and could signify the presence of something like endometriosis.”
Childlaw spoke passionately about the normalization of menstrual pain, which discourages individuals from seeking help or advocating for themselves. Many patients grow up hearing that severe period pain is "normal" or a rite of passage, internalizing a culture of silence and endurance. This societal mindset not only delays diagnosis but also perpetuates feelings of shame and invisibility among sufferers.
“Cultural stigmas are something really important to consider simply because different cultural approaches, as well as perspectives, can change how somebody potentially interacts with their symptoms, how they view themselves, how they view their symptoms, how the people around them view their experience or their own experience and how that impacts each other”
In many cultures, taboos surrounding menstruation make discussions about menstrual health uncomfortable or even forbidden, further hindering awareness and education. Gender bias within the medical community compounds these issues, with many doctors dismissing patients’ symptoms as psychosomatic or exaggerated. Childlaw highlighted the pervasive frustration among patients who feel invalidated by medical professionals, particularly when their symptoms are attributed to stress or emotional instability rather than being taken seriously as legitimate medical concerns.
Figure 1.2
“A good model to kind of situate this in is something called the social-ecological model, which starts with the individual as the centre. Then there's a larger circle that's immediate family. Then there's a community outside of that. Then you can kind of broaden these spheres to reach like a policy sphere or different communities that this person interacts with. All of those communities and systems impact the individual.” - Tatum Childlaw
Gaps in Medical Education and Research
A critical factor perpetuating inadequate care for endometriosis is the lack of emphasis on the condition in medical education. Childlaw noted that most medical schools devote minimal time to teaching about endometriosis, leaving healthcare providers ill-equipped to diagnose and manage the disease effectively.
This gap in knowledge extends to research funding, which remains disproportionately low compared to other chronic conditions. Childlaw argued that this neglect reflects broader systemic inequities in how healthcare systems prioritize women’s health issues. The lack of funding hinders advancements in diagnostic methods, such as non-invasive biomarkers, and stalls the development of innovative treatments.
“There’s a historical background of lack of research, lack of advocacy, lack of policy, representation. When we can remove those barriers and chip away at them and reset and then try to develop from there, that can have a really huge impact going forward… Women's health as a fraction of the overall population's health is a space that we need to continue focusing on and funding. Fund both research, policy, programming, and work on advocacy.”
Gaps in Medical Education and Research
Addressing the challenges of endometriosis requires a multi-dimensional approach:
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Public Awareness: Normalizing discussions about menstrual health and educating the public about endometriosis are critical steps toward reducing stigma and empowering individuals to seek care.
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Medical Training: Incorporating comprehensive endometriosis education into medical school curricula and professional development programs can equip providers with the knowledge and empathy needed to deliver effective care.
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Policy Advocacy: Advocating for legislation to improve access to care, subsidize treatment costs, and protect the rights of individuals with chronic pain is essential.
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Research Investment: Increased funding for endometriosis research can lead to breakthroughs in diagnosis and treatment, offering hope to millions of sufferers.
Education can be promoted through accessible programs such as the ENPOWR program.
“The ENPOWR program is an educational program for adolescents that includes menstrual health and endometriosis awareness. It builds in some tools, and there's a knowledge assessment pre and post so that we can understand how effective the program is. This is an example of a program that was implemented after the policy advocacy work that was done by EndoFound to promote the presence of menstrual health education in education curriculum. The work that I do for EndoFound involves focusing on the monitoring and evaluation of the implementation of that program."
Endometriosis is not just a medical condition; it is a public health crisis that underscores systemic inequities in healthcare.
Endometriosis is not rare—awareness and accountability are.
Addressing the cultural, systemic, and educational barriers to endometriosis care is an urgent imperative. Only through collective effort can we dismantle the silence and stigma surrounding this disease, ensuring that individuals receive the care, respect, and recognition they deserve.