BLEED

1. Endometriosis: A Misunderstood and Underdiagnosed Condition Affecting Millions

"There are, according to the World Health Organization, 190 million islands on this planet: people with endometriosis."

A widespread, painful condition. Endometriosis is a chronic disease where tissue similar to the uterine lining grows outside the uterus, causing severe pain, inflammation, and often infertility. It affects approximately 10% of people assigned female at birth, which translates to roughly 190 million individuals worldwide. Despite its prevalence, endometriosis remains poorly understood and frequently misdiagnosed.

Complex and varied symptoms. The disease manifests differently in each person, but common symptoms include:

• Debilitating menstrual cramps
• Chronic pelvic pain
• Pain during sex
• Gastrointestinal issues
• Fatigue
• Infertility

The wide range of symptoms and lack of a definitive non-invasive diagnostic test contribute to the average 7-10 year delay in diagnosis, leaving many to suffer in silence for years before receiving proper care.

2. The Long Road to Diagnosis: Years of Pain, Disbelief, and Medical Gaslighting

"Have you ever been told the pain you feel is imaginary? That the mental anguish you experience from being trapped in a cycle of feeling bad, then feeling bad about feeling bad, could be solved with a better attitude and a brisk walk?"

Medical dismissal is common. Many endometriosis patients face years of their symptoms being dismissed, minimized, or attributed to normal menstrual pain. This medical gaslighting can have severe psychological consequences, leading patients to doubt their own experiences and delay seeking further care.

Obstacles to diagnosis. Factors contributing to delayed diagnosis include:

• Normalization of menstrual pain in society
• Lack of education about endometriosis among medical professionals
• Reliance on laparoscopic surgery for definitive diagnosis
• Bias against women's pain in the medical system

The author's personal journey to diagnosis took 24 years, highlighting the systemic failures in recognizing and treating this condition. Many patients report similar experiences, underscoring the need for increased awareness and education about endometriosis among both medical professionals and the general public.

3. Birth Control: A Band-Aid Solution with Serious Side Effects

"To have to ask for permission to do something to your own adult body, and risk being denied, attacks the very heart of inalienable constitutional rights—yet so many of the world's societies wholeheartedly endorse this prejudice when it comes to people with uteruses."

Hormonal contraceptives as first-line treatment. Birth control is often prescribed as the primary treatment for endometriosis, based on the theory that suppressing menstruation will alleviate symptoms. However, this approach fails to address the underlying disease and can mask its progression.

Significant side effects. Hormonal birth control can cause a range of side effects, including:

• Depression and anxiety
• Changes in libido
• Weight gain
• Blood clot risk
• Bone density loss

Many patients report feeling pressured to accept these side effects as a necessary trade-off for pain relief. The author's personal experience with an IUD highlights the potential for severe mental health impacts, raising questions about informed consent and the long-term consequences of hormonal treatments.

4. The Patriarchal Roots of Gynecology and Modern Medical Mistreatment

"Gynecology is a field of medicine founded on the historical premise that it should be men who tell women how their bodies work."

A troubling history. Modern gynecology has its roots in deeply problematic practices, including:

• Experimentation on enslaved women without anesthesia
• Beliefs in "wandering wombs" and female hysteria
• Exclusion of women and people of color from medical education

This historical context continues to influence contemporary gynecological care, contributing to the dismissal of women's pain and the pathologization of normal female experiences.

Ongoing power imbalances. The medical system still reflects these patriarchal origins, with patients often feeling powerless in their interactions with healthcare providers. The "sick role" theory highlights how patients are expected to defer to medical authority, even when their own experiences contradict the doctor's assessment. This power dynamic is particularly harmful for patients with chronic, poorly understood conditions like endometriosis.

5. Intersectionality in Healthcare: How Race, Class, and Gender Affect Treatment

"Endometriosis patients are already disadvantaged by the fact that we have a feminized chronic illness in a misogynistic world. All the other things that compromise our ability to get fair treatment are an undertow, dragging us further into the ocean."

Multiple layers of discrimination. Patients with endometriosis face compounded challenges based on various aspects of their identity:

• Race: Black and Indigenous patients often face greater dismissal of their pain
• Class: Lower-income patients have less access to specialized care
• Gender identity: Trans and non-binary patients struggle with additional barriers to treatment
• Body size: Fat patients often have their symptoms attributed solely to their weight

Disparities in care. These intersecting factors can lead to:

• Longer delays in diagnosis
• Misdiagnosis (e.g., pelvic inflammatory disease in Black women)
• Less access to advanced treatments and pain management
• Greater psychological toll from repeated medical trauma

The author emphasizes the need for a more inclusive and culturally competent approach to endometriosis care that acknowledges and addresses these disparities.

6. The Mind-Body Connection: Mental Health Impacts of Chronic Pain and Illness

"I have been so thoroughly traumatized by my medical experiences that even the thought of attending a doctor's appointment fills me with dread."

Psychological toll of chronic illness. Living with endometriosis can have severe mental health consequences, including:

• Depression and anxiety
• Post-traumatic stress disorder (PTSD)
• Suicidal ideation

The constant pain, coupled with the struggle to be believed and receive proper care, creates a cycle of suffering that affects every aspect of a patient's life.

Limitations of the mind-body divide. The author critiques the Western medical model's separation of physical and mental health, arguing that this approach fails to address the complex interplay between chronic pain and psychological well-being. The book advocates for a more holistic understanding of endometriosis that recognizes the interconnectedness of physical symptoms and mental health, and provides comprehensive care that addresses both aspects of the disease.

7. The Pharmaceutical Industry's Grip on Endometriosis Care and Research

"AbbVie also pays a considerable amount annually to promote Lupron to doctors. In 2018, the company spent $4.32 million on Lupron-related payments to 11,680 physicians."

Profit-driven treatment. The pharmaceutical industry heavily influences endometriosis care through:

• Funding of research focused on drug treatments
• Marketing to doctors, including payments and perks
• Development of new drugs with questionable long-term safety profiles

Limited research on non-drug treatments. The focus on pharmaceutical solutions has led to a lack of investment in:

• Surgical techniques like excision
• Non-hormonal treatments
• Research into the root causes of endometriosis

The author argues that this profit-driven approach prioritizes symptom management over finding a cure or more effective long-term treatments. The book calls for greater transparency in the relationships between pharmaceutical companies and healthcare providers, as well as increased funding for independent research into endometriosis.

8. Surgical Options: Weighing the Risks and Benefits of Hysterectomy

"I wonder why we put up with all this nonsense. To that I answer, Do we really have a choice? We either live with it, or stop living."

The last resort. For many endometriosis patients, hysterectomy is presented as a final option after years of ineffective treatments. However, the decision to remove the uterus (and potentially ovaries) is complex and deeply personal.

Pros and cons of hysterectomy:
Potential benefits:

• Significant pain relief for some patients
• End to menstruation and related symptoms
• Potential reduction in disease progression

Potential risks:

• Surgical complications
• Premature menopause (if ovaries are removed)
• No guarantee of complete symptom resolution

The author's personal experience with hysterectomy highlights both the potential for relief and the ongoing challenges of living with endometriosis, even after surgery. The book emphasizes the need for better patient education about surgical options and their long-term implications.

9. Patient Empowerment: Advocating for Better Care and Systemic Change

"Feeling worthy of more than what you are given is an act of rebellion, and I choose to be rebellious."

Taking control of care. The author advocates for patients to:

• Educate themselves about endometriosis and treatment options
• Keep detailed records of symptoms and medical encounters
• Seek second (or third) opinions when necessary
• Connect with support groups and advocacy organizations

Pushing for systemic change. Beyond individual advocacy, the book calls for broader reforms in endometriosis care:

• Increased funding for research
• Better education for medical professionals
• Recognition of endometriosis as a serious, systemic disease
• Implementation of trauma-informed care practices

The author emphasizes that while self-advocacy is crucial, the ultimate goal should be a healthcare system that provides compassionate, evidence-based care for all endometriosis patients, regardless of their background or resources. By sharing their stories and demanding better, patients can contribute to a broader movement for change in how chronic illnesses, particularly those affecting marginalized groups, are understood and treated.

Last updated: November 11, 2024