March is Endometriosis Awareness Month.
Endometriosis, sometimes called endo, is a disease characterized by the presence of tissue resembling endometrium (the lining of the uterus) outside the uterus. It causes a chronic inflammatory reaction that may result in the formation of scar tissue (ex. adhesions, fibrosis) within the pelvis and other parts of the body. It's a whole-body disease—endo has been found on every organ in the body!
Many times, doctors dismiss patients' symptoms as "just a bad period" and do not try to figure out what is causing their pain. For a disease that affects about 200 million women worldwide (and approximately 1 out of every 10 women in the United States!), this disease does not get a lot of attention.
I do not have endo, but I have an expert helping me with this blog post: my daughter Olivia. After over two years of “mystery” pain, she was diagnosed with endo last year. For those of you who do have this chronic disease, you know that getting a diagnosis is sometimes a harrowing, long-fought battle. Olivia went through many invasive tests to “rule out” what her condition was not before learning what it was. Many women go through years (7-10, on average), to find the proper diagnosis for their pain and suffering. Thankfully, Olivia had the tenacity to advocate for herself and get a diagnosis that was accurate. However, even after being diagnosed, she is continuing to figure out what will help her reduce her pain.
If you'd like to learn more about endometriosis, we have several resources that you may find useful. Check out the book list below for some suggestions from our collection, or request an item that we don't have here. We also have a thorough e-resource called Rosen Health and Wellness available on our website that addresses health topics, including endo.
- “Endometriosis.” Yale Medicine, Yale Medicine, 11 Aug. 2022, https://www.yalemedicine.org/conditions/endometriosis. Accessed 9 Mar 2023.
- “Endometriosis.” Teen Health and Wellness, Rosen Publishing Group, Inc., April 2020, https://teenhealthandwellness.com/article/149/endometriosis. Accessed 9 Mar 2023.
I invited the endometriosis community to send in their stories. At the time, I thought I would individually edit and publish these on my Medium publishing platform. After reading them, I realized the strength of storytelling in women's circles, and a book blossomed. The courage it takes survivors to revisit trauma and share it publicly for the greater good is a testament to each other's perseverance and integrity. Putting grief and abuse into words is a humbling journey in and of itself. But that's how warriors are made. Sharing these stories, I hope other women find validation and inspiration. The Endometriosis life is a social injustice. Together, by sharing our experiences, we can find our truth and build a more just future for the next generation. This book marks a celebration of empowerment for all our authors.
Endometriosis materializes when the endometrium--the tissue that lines the inside of the uterus--sheds, but does not exit a woman's body during her period. Instead, it grows outside of the uterus, spreading to organs and nerves in and around the pelvic region. The resulting pain is so physically and emotionally insufferable that it can mercilessly dominate a woman's life. The average woman with endometriosis is twenty-seven years old before she is diagnosed. It is one of the top three causes of female infertility. The pain it emits can affect a woman's career, social life, relationships, sexual activity, sleep, and diet. It is incurable, but highly treatable. Unfortunately, though, it is rarely treated in a timely manner, if at all, because of misdiagnoses and/or a lack of education among those in the medical community. This book gives hope to everyone connected to endometriosis. That includes every woman and young girl who has it, and the women and men in their lives--the mothers, fathers, husbands, children, and friends--who know something is wrong, but do not know what it is or what to do about it. This book is written at a level that everyone with ties to this disease can relate to and understand, but it is also for doctors with good intentions who lack the knowledge of how to diagnose or treat it. The Doctor Will See You Now is for women determined to let the world know their stories so that every woman with this disease--from the thirteen-year-old girl who is being told that her pain is "part of becoming a woman" to the woman who has been misdiagnosed for decades--knows she is not alone. Endometriosis is one of the top three causes of female infertility-- but is rarely treated in a timely manner because of misdiagnoses and a lack of education in the medical community. Seckin is determined to let the world know that the pain is real ... the patients are not crazy ... and there is hope.
Approximately one out of every 10 women has endometriosis, an inflammatory disease that causes chronic pain, limits life's activities, and may lead to infertility. Despite the disease's prevalence, the average woman may suffer for a decade or more before receiving an accurate diagnosis. Once she does, she's often given little more than a prescription for pain killers and a referral for the wrong kind of surgery. Beating Endo arms women with what has long been missing -- even within the medical community -- namely, cutting-edge knowledge of how the disease works and what the endo sufferer can do to take charge of her fight against it. Leading gynecologist and endometriosis specialist Dr. Iris Kerin Orbuch and world-renowned pelvic pain specialist and physical therapist Dr. Amy Stein have long partnered with each other and with other healthcare practitioners to address the disease's host of co-existing conditions -- which can include pelvic floor muscle dysfunction, gastrointestinal ailments, painful bladder syndrome, central nervous system sensitization -- through a whole-mind/whole-body approach. Now, Beating Endo formalizes the multimodal program they developed, offering readers an anti-inflammatory lifestyle protocol that incorporates physical therapy, nutrition, mindfulness, and environment to systematically addresses each of the disease's co-conditions on an ongoing basis up to and following excision surgery. This is the program that has achieved successful outcomes for their patients; it is the program that works to restore health, vitality, and quality of life to women with endo. No more "misdiagnosis roulette" and no more limits on women's lives: Beating Endo puts the tools of renewed health in the hands of those whose health is at risk.
One in 10 women worldwide have endometriosis, yet is is funded at 5% of the rate of diabetes; women are half as likely to be treated for a heart attack as men and twice as likely to die six months after discharge; over half of women who are eventually diagnosed with an autoimmune disease will be told they are hypochondriacs or have a mental illness. In 2015, Guardian journalist Gabrielle Jackson wrote a piece about her own struggles with the crippling pain caused by endometriosis. It triggered such an overwhelming response that the Guardian launched a world-wide investigation into the disease. Thousands contacted the Guardian and hundreds of thousands more read and shared the material. This was the catalyst for Gabrielle thinking more widely about women's pain and how it is viewed and treated not just by the medical profession but wider society.
This book is for anyone who has experienced illness, chronic pain, or endometriosis. Abby Norman narrates her years-long journey to discover the source of her excruciating pain, putting her own trials into a broader historical, sociocultural, and political context. Norman shows that women's bodies have long been the battleground of a never-ending war for power, control, medical knowledge, and truth. It's time to refute the belief that being a woman is a preexisting condition.
Secking explains what endometriosis is, in terms that adolescents can understand. Endo is not just part of 'becoming a woman', and many women have been diagnosed for decades. It is a physically and mentally debilitating disease that currently affects 176 million women of childbearing age worldwide. Young women need to know the truth about the disease so they can overcome their fears, advocate for their own health, and begin the quest of healing.