L.A.-based poet, Leah, was in high school when her worsening acne, painful cramps, and anxiety and depression first tipped her off to the possibility that something wasn’t right. In an effort to control her acne, she decided to go on birth control. “I was super self-conscious of my skin and had seen that some forms of birth control helped with acne,” she says.
After years of trying one birth control after the other, Leah continued to struggle with hormonal and cystic acne as well as increased feelings of anxiety, weight gain, and painful cramps. It took nearly a decade for her to receive an official diagnosis of stage 3 endometriosis following a difficult surgery in which her right ovary and fallopian tube were removed.
Giada was 28 years old when she experienced her first night of devastating, mind-numbing cramps. “The pain was unbelievable, but it was Christmas, so I didn’t want to make a fuss. I put off going to the doctor, hoping that the pain would just go away,” she says.
It didn’t. What followed was a frustrating seven-year journey of one costly appointment after another with doctors who continued to misdiagnose her condition.
Because her main symptom — painful bowel movements — wasn’t considered typical of endometriosis, she had difficulty finding the right care. After years of medical dead-ends and futile doctors’ visits, Giada decided to get proactive and become an advocate for her health. She suspected that she may have endometriosis, and finally found a specialist who recognized her symptoms. Soon after, Giada, now a psychologist, was diagnosed with a severe case of the disorder.
The stories of Giada and Leah are not uncommon. One in ten women suffer from endometriosis globally, and over five million women are impacted by the disease in the U.S.
Like many conditions that continue to baffle medical professionals, endometriosis can present with radically different symptoms. Because of this and the nature of the disorder, women are often required to become advocates for their own care and to endure invasive surgical procedures in order to receive an official diagnosis and treatment.
What Is Endometriosis?
Endometriosis is a condition rooted in the reproductive system, but it can have wide-ranging effects that impact the endocrine (or hormonal) system, immune system, and digestive tract.
Its name comes from the word endometrium, which is the tissue regularly found inside the lining of the uterus. During a healthy menstrual cycle, endometrial tissue goes through its own phases of growth and shedding, the latter of which is responsible for the bleeding that happens during your regular period.
In women with endometriosis, this tissue is found in locations outside of the uterus, including the abdomen, ovaries, bladder, or intestines. Because this tissue naturally responds to the hormonal shifts throughout a menstrual cycle, it can begin to grow or shed wherever it is located, which can cause severe pain, bleeding, scar tissue, and other medical problems.
A Guide to Early Signs and Diagnosis
Early detection is key when it comes to treating—and mitigating—the impacts of endometriosis.
There are several initial tests your gynecologist may choose to perform to get to the bottom of your symptoms, including a pelvic exam and imaging tests like an ultrasound or MRI that will provide a deeper look at your pelvic organs. But ultimately, official diagnosis of this disorder requires surgical removal and a biopsy of endometrial implants.
The difficult and invasive nature of getting a confirmed diagnosis is compounded by the fact that symptoms of endometriosis can vary widely from woman-to-woman. While it’s important to know the most common signs, keep in mind that each woman with endometriosis will often have her own unique experience.
Painful periods: Though mild, occasional cramps during that time of the month are completely normal, menstrual pain or cramping that is frequent and/or severe enough to keep you from participating in regular activities can be a sign of a deeper issue.
Heavy or painful bleeding: Abnormal or heavy menstrual bleeding can be caused by a number of factors, including stress and hormonal imbalance, but it’s also a common symptom of endometriosis. The average period lasts 5-7 days and occurs every 28-34 days. If your cycle falls outside of those parameters, or if your flow regularly soaks through a tampon or pad every hour, you may have heavy or irregular bleeding patterns.
Chronic pelvic pain: Some women report experiencing pain that begins one or two days before menstruation and lasts until the end of their period. Others may experience constant, debilitating pain that is severe enough to interfere with their day-to-day lives. In either case, pain can present on one or both sides of the pelvis. Research shows that the severity of the pain is not necessarily indicative of the severity of the condition: even mild chronic pelvic pain could be a symptom.
Painful sex: Experiencing physical discomfort or pain during or after sex can be a symptom of endometriosis. For some, the pain can intensify depending on the sexual position, where your endometriosis is located, or what phase of the menstrual cycle you’re in. If your endometriosis is widespread, you may experience pain during sex no matter the position.
Gut issues: As Giada discovered, endometriosis can cause a wide range of intestinal issues, including bloating, fluid retention, constipation, gas, diarrhea, and painful bowel movements.
Infertility: An estimated 50% of women who struggle with infertility have endometriosis. Though the exact cause of endometriosis and its direct connection to infertility are unknown, research shows that the longer scar tissue and/or endometrial tissue builds up and is left untreated, the higher the risk of infertility.
Because of the invasive nature of diagnosis and fluctuating symptoms, studies conducted by the Endometriosis Association show that the average delay in official diagnosis is seven to ten years, which can have significant physical and mental impacts. “It was hard to face the almost unrelenting uncertainty of my visits with various doctors,” Giada says. “It was an incredibly difficult period in my life — an emotionally painful period that was surpassed only by the physical pain I was in.”
Research shows that women’s pain is often less thoroughly investigated in clinical settings if the underlying cause is unknown, especially when a patient is just beginning to seek care. And Black women’s pain is taken even less seriously; a 2012 study found that Black patients are 22% less likely to receive pain medication than their white peers. The gender and racial bias can also have a substantial impact on conditions like endometriosis that are harder to diagnose and less studied.
Dr. Tamer A. Seckin, an endometriosis specialist, says that “endometriosis is probably the least researched subject in women’s healthcare in America.” With a substantial lack of funding and research in the field, coupled with the systemic clinical bias against legitimizing female pain, it’s no surprise that it can take up to ten years for those affected to receive the diagnosis—and care—that they need.
Finding a Lifestyle to Support Your Symptoms
Hormone therapy, pain medication, and surgery are the three main avenues for treating endometriosis, particularly in severe cases. Though there is no cure, there are some lifestyle changes that can also help mitigate or alleviate your symptoms.
Diindolylmethane (DIM) is a plant-based chemical found naturally in cruciferous vegetables like broccoli, cauliflower, collard greens, and kale. Early research suggests that DIM can help inhibit aromatase, an enzyme that converts testosterone to estrogen. It has also been shown to help reduce the heavy bleeding associated with endometriosis, though more research is needed before it is widely embraced by the medical establishment. If adding a daily helping of cruciferous veggies to your plate isn’t your thing—don’t worry. You can up your DIM consumption by taking it as a supplement.
Other diet changes have also been proven helpful in reducing pain and mitigating disease progression, specifically, an anti-inflammatory diet high in foods like green tea and fish oil. A gluten-free diet may also help to reduce pain. And for women with whose endometriosis presents with gastrointestinal symptoms, a low FODMAP diet may be the most successful way to manage reducing your symptoms and lower your pain.
Several studies have shown that acupuncture can effectively reduce endometriosis-related pain. For patients with chronic pelvic pain, recent studies suggest that pelvic physiotherapy may help to relax the pelvic floor and retrain muscles to prevent the painful spasms sometimes associated with endometriosis.
Seed cycling is a popular alternative medicine practice that leverages the nutrients in four types of seeds to help balance your hormones during specific phases of the menstrual cycle. Phase one of seed cycling consists of eating one tablespoon each of raw, ground pumpkin and flax seeds during the follicular phase of your menstrual cycle, when estrogen levels increase in the body. Phase two consists of eating one tablespoon each of raw, ground sesame and sunflower seeds during the luteal phase of your menstrual cycle, when progesterone levels increase in the body. Many utilize this practice to remedy irregular menstrual cycles, decrease cramps or menstrual pain, and support fertility.
Finally, it’s important to know what is going on inside your body. Regular testing can help you understand your levels and rule out other hormone-driven disorders, like polycystic ovary syndrome (PCOS), that often have overlapping symptoms.
Today, Leah is still navigating the world of endometriosis and hormonal care. But she laments not having access to hormonal testing.
“Something I've really been struck by in looking back at this experience is how little my natural hormonal balance was measured or monitored. Of course, I did have blood work taken at different points, but it was more frequently to discuss the possibility of thyroid issues. I now feel like I was never given a decent opportunity to understand what the ideal levels were, and where I stood.”