Endometriosis Resources

A guide to endometriosis resources, including support groups, locating specialists, mentions in the media, and information on inclusive care

The following are trusted informational resources that explain endometriosis, discuss possible causes, compare diagnostic methods, and critically examine the treatment options that are available. While each source may offer a variety of tools, they have been categorized according to their main focus. Many of these same resources have been cited as references throughout the site. Unfortunately, some of the sources do not use inclusive language. This is not meant to be an exhaustive list of resources, only a helpful starting point. It's likely that there are excellent sites, studies, and doctors not listed.

Endo 101

These organizations, studies, and websites are dedicated to raising disease awareness, furthering research, empowering patients, and promoting self advocacy. Exploring multiple platforms for information will help expand your understanding of this complex condition. Learn more about the basics of endometriosis through these links.

Endometriosis from A to Z is an informational guide on endometriosis that was written by a variety of doctors and healthcare providers. The authors hope that endometriosis patients will educate themselves on endometriosis and the treatment modalities to make informed decisions in their care. This is a must read.
Endopaedia is a highly accurate, important, and informative resource that was founded by Dr. David B. Redwine, M.D., a leading endometriosis excision specialist and researcher. This is an excellent starting point for your endometriosis research.
Center for Endometriosis Care is an excision clinic that's dedicated to raising awareness and furthering research. They are a trustworthy and respected source for learning everything about endometriosis. Their content library provides additional resources and links.
The Endometriosis Association is a self-help organization of people with endometriosis, doctors, scientists, and others interested in exchanging information about the disease.
Endometriosis Foundation of America is a non-profit that strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research.
Endometriosis Research Center was among the first endometriosis organizations to be formed in the United States. They're addressing the ongoing need for international endometriosis awareness, advocacy, support, education, legislative efforts and research facilitation.
The Endometriosis Association of Ireland was formed in 1987, to provide information and support for people with endometriosis.
Endometriosis Australia endeavors to increase recognition of endometriosis, provide endometriosis education programs, and help fund endometriosis research.
The World Endometriosis Society (WES) advances evidence-based standards and innovations for education, advocacy, clinical care, and research in endometriosis, adenomyosis, and related disorders, to improve the lives of all affected people and their families.
Endometriosis News is a science and health publishing website for endometriosis. They feature the latest news on endometriosis.
EndoWhat? is a film created by endometriosis patient Shannon Cohn to educate and bring more widespread awareness to the disease. It's available for public screening.
Endographics creates educational infographics designed to spread awareness about endometriosis. They are easy to share, eye-catching, and provide accurate information.

Finding a Specialist

Though endometriosis is a common condition affecting over 176 million people worldwide, there are very few specialists in the medical community that can provide support. It's estimated that there are as few as 100 excision surgeons in practice worldwide. What a stark lack of medical support for an epidemic-scale disease! Finding a knowledgeable and compassionate provider can be one of the hardest aspects of managing the disease. Without proper medical support, the symptoms can become chronic comorbidities that will need their own medical intervention. Knowing how to communicate with your doctors and how to gauge their expertise in endometriosis care are important skills to learn. Several communication and screening techniques are offered below, as well as tools for finding an endometriosis specialist near you.

Nancy's Nook is a self-guided research tool that provides an updated list of excision specialists that have undergone a specific vetting process developed by nurse and endo activist Nancy Peterson.
The American End of Endo Project has a physician's directory, which is a locator tool for excision specialists.
Endometriosis.org provides some key points on finding a specialist.
Endo West: Endo and Pelvic Surgery Center has a list of questions to ask your doctor before surgery.
Endometriosis Foundation of America provides valuable advice on seeking a specialist for endometriosis.
Must Ask Questions for Your Surgeon was created by the Endo Girls Blog to help you select a doctor and feel confident in your choice.
Do You Need That Surgery? How to Decide, and How to Pick a Surgeon if You Do is a helpful NPR article about navigating surgery in general.
What to Ask When Choosing A Doctor for Your Endo Care is a list of questions to ask your potential doctor before trusting them with your care. It was developed by the Center for Endometriosis Care.
Center for Endometriosis Care is among the very first endometriosis specialty centers of expertise, founded by a surgical pioneer and excision surgeon, Dr. Robert Albee.
Dr. Andrew Cook, MD is a trusted endometriosis excision specialist located in California and Colorado.
Dr. Andrea Vidali, MD is a trusted endometriosis excision specialist located in New York, New York.
Dr. Iris Orbuch, MD is an endometriosis expert and surgeon in Los Angeles, California.
Possover International Medical Center is the world's first center for Neuropelveology which was founded and pioneered by Professor Marc Possover. This clinic specializes in pelvic nerve laparoscopy.
The Pelvic Pain Project created the Pelvic Pain Assessment, which is a HIPAA compliant assessment tool that can create more meaningful patient/doctor communication and encourage necessary referrals.
Gynecologic Surgeons Unscrubbed is a series-based podcast developed in collaboration with the Society of Gynecologic Surgeons focusing on surgical and medical education, hosted by Cara King, DO, MS.
Funds for Excision Surgery was created by Endo InVisible whose mission is threefold: raise the profile of, educate the world about, and help fund surgery for endometriosis. If you need funds for excision surgery, they may be able to help.

Hormonal Medications and Hormonal Health

Many doctors use hormonal medications as a first line treatment for endometriosis. Hormone medication can come in the form of oral contraceptives like birth control pills, progestin-only pills, progestin medicines, and GnRH agonists. While hormonal medications are the most commonly prescribed drugs for endometriosis, they have been shown to not eradicate, stop progression, or improve the disease long-term.

Medical therapy represents only a symptomatic treatment and not the definitive solution to endometriosis lesions that may persist despite different medications, dosages, and duration of the therapy.
- Management of Women Affected by Endometriosis: Are We Stepping Forward?

Dr. Jolene Brighten is a Functional Medicine Naturopathic Physician and women's health expert. We've recommended her book, which has been called the Period Bible by readers. Also, check out her Instagram for daily hormonal health information and lifestyle and nutritional advice.
Dr. Lara Briden is a Naturopathic Doctor and women's health expert. She offers excellent insights on hormonal health, contraceptive side effects, and holistic solutions for period problems. We highly recommended her book.
14 Ways Birth Control Pills Rob Us of Our Health explores ways in which birth control negatively impacts users' health.
The Strange Truth About the Pill examines the history of birth control and some of the lesser-known facts about its side effects.
The Contraception Guide provides information on which contraceptives are available today, when you can start taking birth control, whether contraceptives are safe, and what exactly emergency contraception is.
The Bitter Pill: Why Isn’t Birth Control Better? critically examines the side effects of birth control and shows the impacts on patients' lives and health.
Can Birth Control Affect Who You’re Attracted To? discusses the possible ways in which birth control may impact users' preference when selecting a mate and potential effects on the brain.
The Surprising Link Between Women’s Brains and The Birth Control Pill by Sarah Hill, a research psychologist, will teach listeners about what science knows about the pill and the brain, empowering women to make informed health choices.
Hormonal Birth Control Is A ‘Guessing Game.’ You’re Not Making Up The Side Effects looks at the reports of 85 women to understand the impacts of the many and varied side effects of birth control.
Beyond the Pill: A 30-Day Program to Balance Your Hormones, Reclaim Your Body, and Reverse the Dangerous Side Effects of the Birth Control Pill brings together up to date research, relevant science, and clinical expertise to create one of the most informative reads on hormones and hormonal contraceptives.
Period Repair Manual: Natural Treatment for Better Hormones and Better Periods is a compilation of everything that works for hormonal health. How to come off hormonal birth control, what your period should be like, how to talk to your doctor, and treatment protocols for all common period problems, including endometriosis.
This Is Your Brain on Birth Control uncovers the known effects of birth control on the brain.
Sweetening The Pill or How We Got Hooked on Hormonal Birth Control details the history of the pill through a feminist lens.
Fix Your Period: Six Weeks to Banish Bloating, Conquer Cramps, Manage Moodiness, and Ignite Lasting Hormone Balance is a life-changing step-by-step natural protocol to achieve lasting hormone balance and improve everything from PMS, period pain, and heavy periods to irregular cycles and missing periods.

Complementary and Alternative Therapies

A comprehensive, multidisciplinary approach that is individualized to the patient’s needs will provide the most successful, long-term outcome in endometriosis management. Often this will include seeking out a variety of doctors and specialists to address wide-reaching symptoms. This can include working with gynecologists, nutritionists, integrative doctors, urologists, and many other types of healthcare providers. Research has shown several potential benefits of complementary and alternative therapies for endometriosis patients. Examples of complementary therapies include physical therapy, acupuncture, yoga, and meditation. These therapies include various methods that work on mitigating symptoms, stress reduction, and/or disease management.

The Endometriosis and Fertility Clinic is led by Dian Shepperson Mills who is a nutritionist, researcher, and pioneer in promoting nutritional therapy as a safe and effective treatment for endometriosis.
Endo Empowered offers a non-surgical and holistic approach and support platform that was created by an endometriosis patient and Naturopathic Medicine student, Melissa Turner.
Peace with Endo Aubree Deimler is an author, coach, and energy healer who helps people with endometriosis naturally manage pain, increase energy, and find peace with endo.
Self-management Strategies Amongst Australian Women with Endometriosis: A National Online Survey provides insights into the self-care techniques used by endometriosis patients.
Mind-Body Practices for Endometriosis looks at how these techniques may help to manage symptoms of endometriosis.
Your Pace Yoga: Yoga for Incontinence and Pelvic Pain provides poses, sequences, and detailed information on using yoga for pain management and treating the symptoms of endometriosis.
Effects of Acupuncture for the Treatment of Endometriosis-related Pain: A Systematic Review and Meta-analysis examines the effectiveness of acupuncture as a treatment for endometriosis-related pain.
Is Acupuncture in Addition to Conventional Medicine Effective as Pain Treatment for Endometriosis? A Randomized Controlled Cross-over Trial examines whether acupuncture is an effective additional pain treatment for endometriosis.
Find a Pelvic Rehab Practitioner through Pelvic Rehab's provider locator tool.
Pelvic Sanity is a physical therapy clinic located in Southern California that specializes in pelvic pain, sexual dysfunction, and urinary and bowel conditions. They offer remote consultations, patient resources, and an immersive out of town program.
The V Hive has weekly episodes from the field’s top practitioners in women's health. Their mission is to make the highest quality information on the most beloved part of your body accessible, understandable, and implementable.
Endometriosis: A Key to Healing And Fertility Through Nutrition by Dian Shepperson Mills and Michael Vernon - Drawing upon years of research, the authors show how the right diet can provide the key to optimum health in overcoming endometriosis. It includes an explanation of how endometriosis affects the body, advice on how to cope with it, an account of the key role played by nutritious and healthy food, and information on foods that are harmful as well as foods with healing qualities.
Anti-Inflammatory and Elimination Diet Guide provides insights on using diet to manage endometriosis symptoms and how to follow an elimination diet protocol. It was created by Saint Louis University School of Medicine Department of Obstetrics, Gynecology, and Women’s Health Center for Endometriosis.
Diet and Endometriosis Risk: A Literature Review examines prior publications on the connection between diet and endometriosis.

For Adolescents and Teens

The adolescent population is commonly affected by endometriosis and experience an early onset of symptoms. This makes sense when you consider the hormonal changes taking place at this transitional time. During the developmental stages of teenage years, hormones begin to fluctuate and the body starts producing estrogen. This change in hormones can initiate the pain and symptoms of endometriosis. Endometriosis lesions have been found to occur in patients both before menstruation and early after it.

In addition, when endometriosis appears during adolescence, there is likelihood that the disease will progress and, if left untreated, produce adverse effects that go beyond pain, and include infertility. Finally, a majority of adolescent girls with chronic pelvic pain not responding to conventional medical therapy have endometriosis. For all these reasons, an early identification of the disease may go a long way in slowing or preventing progression.
- Endometriosis In Adolescents Is A Hidden, Progressive and Severe Disease that Deserves Attention, Not Just Compassion

The ENPOWR™ (ENdometriosis: Promoting Outreach and Wide Recognition) Project is a school and community-based endometriosis education program, the only one of its kind in the United States. ENPOWR™ raises awareness and promotes treatment-seeking behavior through an interactive lesson.
Vital Health Endo Blog features a personal perspective from a tenacious teen patient who learned how to advocate for herself early on in her endo journey.
The Endometriosis Foundation of America has several videos and informational articles focused on teen awareness.
Endometriosis UK provides a variety of resources for teens to learn about endometriosis.
This Endo Life discusses the often overlooked but imperative impacts of endo on teens who are already marginalized and highlights the importance of education.
Center for Young Women's Health offers resources for cis teen girls.
Taking The Pill As A Teenager May Have Long-lasting Effect On Depression Risk discusses the findings of their study on hormonal contraceptive use in teens.
Endometriosis In Adolescents Is A Hidden, Progressive and Severe Disease That Deserves Attention, Not Just Compassion provides scientific insights on endometriosis in the younger patient population.

Support Groups

Finding adequate support, receiving validation, and maintaining one's self worth and dignity are all important components of disease management and basic human rights. Below are some online communities to join for support, advice, and disease information.

The internet community created by these forums provides a lifeline through the four to ten years it often takes to receive a diagnosis of endometriosis and for the years of no known cure afterwards. While WebMD and the abundance of resources out there that serve as tools for self-diagnosis can at times do more harm than good, supportive communities like those Furseth and Norman describe can be crucial outlets for needs that aren’t being met by the medical establishment, needs that are overwhelmingly felt by women, especially Women of Color, whose pain consistently goes unrecognized and untreated by doctors. These forums and the homespun cures they prescribe will and should continue until health professionals recognize their failings and acknowledge that sometimes, the patient may actually know her own body better than the practitioner.
- Why Online UTI and Endometriosis Communities Are a Godsend for Many Women

Endo Warriors is an organization created by endometriosis patients to provide personalized support patient-to-patient, as well as up to date information on treatment options and care. They also have a Facebook support group.
EndoMetropolis is an extremely helpful resource and space to connect and share information with fellow endometriosis patients and those involved in the endo community. They have great files for members including surgery guides and questions for surgeons.
Dr. Jolene Brighten Hormone Community offers community, advice, and support from fellow endometriosis patients and is moderated by Dr. Jolene Brighten, women's health expert.
Endometriosis Nutrition and Holistic Support provides nutritional advice, holistic support, and a community of fellow endo patients.
The Endo Black is focused on raising awareness about endometriosis within the Black community and to educate the public about the effects of endometriosis.
Ask Me About My Uterus is Abby Norman's site which has informative articles and personal stories written by herself and fellow endometriosis patients.
Unsweetening the Pill: Support For Going Off Hormonal Birth Control is a support group that provides community, resources, and care to those making the transition off hormonal birth control.
Why Online UTI and Endometriosis Communities Are a Godsend for Many Women discusses the important and often fundamental role that online communities can provide for patients.

Inclusive Care: Trans and Non-binary Patients

Inclusion in endometriosis care is even more stark. Gendered language surrounds the discussion of endometriosis. Anyone with a uterus, regardless of identity, can have the disease. This includes individuals who menstruate and those who do not. Incorrectly, trans men and non-binary individuals are excluded from a majority of medical texts, research, and awareness. This leads to an even longer delay in diagnosis or a complete exclusion from appropriate care. The resulting isolation, stress, and burden are profound.

It is also imperative to look beyond gendered health and include all persons, many of whom who are often struggling to access endometriosis diagnosis, treatment and supportive, quality care in a traditionally female-identified space. The oft-overlooked, unique considerations in healthcare settings that fail to be inclusive can lead to additional stressors, further isolation and impaired treatments. Without a doubt: endometriosis has a significant social and psychological impact on the diverse population affected – across several domains of their lives. The time for the disease to receive recognition as a major public health issue is long past due.
- Center for Endometriosis Care

Transgender Man Reveals Gender Bias in Health Care Before and After Transitioning illustrates how gender bias in medicine affects the patient experience and their quality of care.
Endometriosis and Gender Nonconformity discusses the challenges facing gender nonconforming people while seeking medical care.
Managing Endometriosis When You're Trans shares a variety of personal experiences from trans and non-binary patients with endometriosis.
How to Find A Trans-friendly OB/GYN provides several resources for finding a knowledgeable provider.
The World Professional Association for Transgender Health promotes the highest standards of health care for individuals through the articulation of Standards of Care for the Health of Transgender and Gender Nonconforming People.
My Trans Health aids in finding access to quality healthcare for trans people.

Gender Bias in Medicine

Incorrectly labeled as hysteria, women's health has been marginalized since the beginning of medicine. Gender bias in medicine has historically hindered diagnoses, research, and funding, and continues to do so. Since endometriosis largely affects cis females, the stigma surrounding menstruation and female pain has damned it to be dismissed by society. Patient education and empowerment has led to more awareness surrounding menstrual health and gender bias in medicine.

Pain Bias: The Health Inequality Rarely Discussed is a BBC article that investigates gender bias in medicine.
The Invisible Woman? The Challenge at the Doctor's Office Every Woman Needs to Know About looks at the pervasive gender bias in medicine that leads female patients to be misdiagnosed or dismissed as complainers. Meet the doctors fighting for change.
Why Don't Doctors Trust Women? Because They Don't Know Much About Us examines the medical dismissal of female pain through history.
Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick is an eye-opening read for patients and health care providers alike. Women suffer because the medical community knows relatively less about their diseases and bodies and too often doesn’t trust their reports of their symptoms.
Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine examines how women are one of the most ignored groups in our medical system, a system where young women, especially Women of Color and trans women, are invisible.
A Cure of One’s Own: After Years of Dismissal, A New Wave of Literature Sees Women Confronting An Epidemic of Underdiagnosed Chronic Pain Conditions looks at female-written literature on chronic illness.
Our Pain Is Invisible But We’re Not this new movement is reframing how we think about, talk about, and treat the debilitating chronic pain that affects millions of people.
I Know Pain. But Why Is Ours Treated Differently? looks at gender bias through history and shares the writer's personal experience with endometriosis.
I Am Not The Kind Of Woman Who Complains Of Everything: Illness Stories On Self and Shame In Women With Chronic Pain explores issues of self and shame in illness accounts from women with chronic pain.
Fear of the Clit: A Brief History of Medical Books Erasing Women's Genitalia looks at the long, insidious history of gender bias.
Women and Pain: A Reading List is an excellent list of female authors who write about their chronic pain and illness.
What Happens When Pain Is A ‘Women’s Issue’ questions the link between treatment of pain and gender.
The Female Problem: How Male Bias In Medical Trials Ruined Women's Health reveals the substantial impact of excluding women from medical and scientific research.
Are Doctors Taking Women’s Pain Seriously? highlights the negative impacts of gender bias in medicine and urges us to make a change.
Influx of Illness: Will Chronic-Illness Patients Get Their #MeToo Movement? is a weeklong series about chronic illness and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.
Wandering Wombs and Hysteria: The Tortuous History of Women and Pain reveals the prevalence of gender bias throughout history.
The Health Consequences of Body Shaming Women looks at the dangerous ramifications of women being shamed and silenced about their bodies.
Yale Study Shows That Adults Take Girls’ Pain Less Seriously Than Boys found that adults rated pain as more severe if they thought the child was a boy rather than a girl.
The Healthcare System Thinks Helping Women is Bad for Business reveals how dangerous and pervasive gender bias is in medicine and why companies stand to profit.

People of Color and Black Women

Racial bias in medicine is a rampant problem that costs People of Color the proper diagnosis, access to treatments, inclusion in studies, and much more. People of Color and Black Women with Endometriosis have more challenges getting a diagnosis and accessing costly surgeries and treatments. Black women are only about half as likely to be diagnosed with endometriosis compared to white women. According to a systematic review and meta-analysis, the prevalence of endometriosis appears to be influenced by race/ethnicity. Several comorbidities of endometriosis, including fibroids, stroke, and depression affect Black women at a higher rate. To make matters worse, white doctors have been shown to view Black patients as less sensitive to pain.

Prevalence of endometriosis appears to be influenced by race/ethnicity. Most notably, Black women appear less likely to be diagnosed with endometriosis compared with White women. There is scarce literature exploring the influence of race/ethnicity on symptomatology, as well as treatment access, preference, and response.
- Influence Of Race/Ethnicity On Prevalence and Presentation Of Endometriosis

I’m Black. I Have Endometriosis and Here’s Why My Race Matters details the specific and additional struggles that Black patients with endometriosis face.
Endometriosis + Racism: How the "Strong Black Woman" Stereotype Hurts Endo Patients covers the compounding struggles that Black Women with endometriosis face.
Endo Guide was created by Endo Black and includes a worldwide specialist locator, informational videos, and personal experiences from Black Women.
Why Tia Mowry Wants More People in the Black Community to Talk About Endometriosis shares Tia’s personal story of endometriosis as a Black woman and the impact race has on care.
How Race/Ethnicity Influences Endometriosis found that the prevalence of endometriosis appears to be influenced by race/ethnicity.
Behind The Times: Revisiting Endometriosis and Race explores how the association between endometriosis and whiteness was established and whether we still ascribe to a certain stereotype of a typical endometriosis patient today.
Myths About Physical Racial Differences Were Used to Justify Slavery and are Still Believed by Doctors Today looks at the history of racism and racial bias in medicine.
Millions of Black People Affected By Racial Bias in Healthcare Algorithms reveals rampant racism in decision-making software used by US hospitals.
Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs about Biological Differences Between Blacks and Whites examines the beliefs associated with racial bias in pain management, a critical health care domain with well-documented racial disparities.

Period and Symptom Trackers

These Apps provide tools to track and monitor your symptoms, menstrual cycle, medications, diet, and more. Charting and tracking provide insights into your symptoms that can be useful for you and your doctor as you work towards successful disease management.

Phendo is a multipurpose app that allows patients to track their symptoms, medicines, etc. and at the same time contributes to the largest collection of clinical data about endometriosis which will be used to begin phenotyping the disease. It's created by Noemie Elhadad, PhD, an associate professor of Biomedical Informatics at Columbia University and an endometriosis patient.
The Five Helpful Endometriosis Apps You Need Now can help you choose which app is right for you.
My Flo: A Functional Medicine Period Tracker and Hormone Balancing App is a smart scheduling and symptom tracking app that can find patterns in your symptoms.
Flutter can help identify signs of trouble in your cycle early on so you can seek treatment sooner than later.
Clue can create a detailed record of your symptoms, their frequency, and severity. This record can give your healthcare provider information that may help with diagnosis and in forming a management plan.
FlareDown is a comprehensive symptoms tracker that includes food, medications, mental health, and customizable fields.

Featured In The Media

As our understanding of endometriosis continues to grow, more awareness is being raised through publications, articles, and blogs. The more awareness that society has, the more research and funding can be dedicated to endometriosis. Patients' personal stories can be informative and validating. These are great for sharing on social media or with friends and family to educate them and to bring awareness to endometriosis.

Weed And Vagina Problems: The Story Of Lara Parker, Cannabis And Endometriosis Activist looks at the role cannabis plays in an endometriosis patient's treatments.
Lara Parker's Instagram addresses endometriosis, vaginal problems, body positivity, and medical marijuana.
My Endometriosis Story by Lily Williams tells an endometriosis patient's story in comic form.
Endometriosis Often Ignored As Millions of American Women Suffer examines how research funding has neglected the disease leading to a misunderstanding in the medical community.
The Invisible One in Ten: Endometriosis Hidden on Campus examines why endometriosis remains much of a mystery despite its prevalence.
Women Suffering in Silence: The Endometriosis Crisis discusses the loss of productivity that patients face, as well as many other significant burdens.
Just How Terrible Is Endometriosis? provides an excellent description of the pain and suffering patients face.
Women With Endometriosis Are Still Being Failed: It's Time The Government Took Bold Action demands that we make larger strides to end the suffering.
Too Often, Quality of Life for Endometriosis Patients Is Dictated by Their Financial Resources details how costly treatments leave many patients without treatment options.
This Is What Living with Endometriosis Really Looks Like features a thoughtful photo series paired with a personal journey.
Trail of Somatic Destruction: This is Your Body on Endometriosis provides a detailed overview of the disease.
Period Pain Can Be “Almost As Bad As A Heart Attack.” Why Aren’t We Researching How To Treat It? looks at the stigma and silence surrounding menstrual health.
What Happens When Pain Is A “Women’s Issue” looks at the detrimental effects that gender bias has on disease awareness, funding, and research.

At Work

The burden of cost is twofold for an endometriosis patient: the cost of medical treatments and the cost of lost productivity. The available literature and data suggest that endometriosis impairs health-related quality of life and work productivity and is a considerable burden on patients. Learning to be vocal about sensitive and marginalized issues, especially in the workplace, is important in creating space and building understanding for endometriosis.

Work and Endometriosis: Legal Issues discusses the available protections in the workplace for people with disabilities through the ADA, the Americans with Disabilities Act.
Why We Need to Talk About Endometriosis At Work shows the importance of awareness in order to facilitate better treatment and conditions for patients.
Preliminary Insights on The Relation Between Endometriosis, Pelvic Pain, and Employment looks at the financial burden of the disease on patients.
Endometriosis and Social Security gives advice on how to apply for disability benefits from the Social Security Administration, SSA.
How to Get On: How to Have a Great, Disabled Life is a self-advocacy guide for those applying to Social Security Disability (SSDI), Supplemental Security Income (SSI), and other forms of disability.
I Lost Everything: The Obscene Cost of Being a Woman with a Chronic Health Problem reveals the financial struggle and personal loss that patients endure.

Get Involved

The following are opportunities to get involved in endometriosis research and contribute to the data that we have on the disease. Hopefully our efforts will expand our understanding and bring about early detection, a less invasive diagnosis, and more successful treatments.

Phendo is a multipurpose app that allows patients to track their symptoms, medicines, etc. At the same time, it contributes to the largest collection of clinical data about endometriosis, which will be used to begin phenotyping the disease. It's created by Noemie Elhadad, PhD, an associate professor of Biomedical Informatics at Columbia University and an endometriosis patient.
The ROSE Study (Research OutSmarts Endometriosis) is researching how to diagnose endometriosis by analyzing menstrual blood. Learn more and sign up for the Clinical Study.

For the next article in the Endometriosis Series, see Endometriosis Books

Endometriosis Series

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