Endometriosis affects one in 10 women of ages 15-44, yet it remains widely misunderstood, often dismissed as “just bad period pain.” If you’re living with endometriosis, you know this chronic condition goes far beyond painful cramps—it impacts physical and mental health, relationships, and fertility. Up to 50% of women facing infertility have endometriosis-related symptoms that impact every aspect of life, including work, yet many don’t receive a diagnosis for an average of 10 years. That’s a long time to be suffering symptoms without a clear diagnosis, and many may feel unsupported along the way.
This Endometriosis Awareness Month, in addition to connecting you with the support you need to manage your condition and achieve your lifestyle goals, we’re also offering up ways your colleagues, managers, and HR teams can help create an environment where you feel seen, heard, and supported at work.
What is endometriosis, and why does it take so long to diagnose?
Here’s a quick overview of endometriosis —aka “endo” for short—for the uninitiated: Each menstrual cycle, the lining of the uterus, aka endometrium, is shed through the vagina. In a woman experiencing endometriosis, that same type of endometrial tissue is found outside the uterus creating painful inflammatory implants. These inflammatory implants can lead to cysts that grow within the ovaries (“endometriomas”); scarring and/or scarring and blockage of the fallopian tubes; endometriosis lesions can form over the bladder, bowel, even within the lungs for some affected individuals. Symptoms include:
- Pelvic pain (often not just during the menstrual periods)
- Irregular spotting between periods
- Painful bowel movements or difficulty with bowel movements
- Bladder pain and/or urgency
- Blood in the urine
- Lower back pain
- Chronic fatigue
Endometriosis can be associated with an increased risk for infertility. The cause of endometriosis is unknown, and many conditions have similar symptoms. Endo can be confused for everything from irritable bowel syndrome (IBS) to sciatica—and many of these potential diagnoses are easier to check out. Although pelvic exams and imaging tests can offer clues, the only current way to confirm endometriosis is through a laparoscopic surgical procedure. This procedure is expensive and invasive, so it’s generally not a physician’s first stop.
An endometriosis diagnosis is categorized as one of four stages: minimal, mild, moderate, and severe—staging is performed at the time of surgery. Interestingly, the stage of endometriosis does not always correlate with the degree of pain the person experiences.
Treatments to help manage endometriosis symptoms include: over the counter pain medication (NSAIDs) such as ibuprofen or mefenamic acid; hormonal suppression either with a birth control pill or progestin IUD. If these methods are not effective, your provider might suggest other forms of hormone suppression (i.e., GnRH agonist or GnRH antagonists). Bear in mind that these hormonal treatments are not indicated if you’re actively trying to conceive (though the GnRH agonists /antagonists may sometimes be prescribed for certain fertility treatments in combination with other fertility medications).
If medication does not help improve endometriosis symptoms, your physician may discuss the possibility of surgery to try and resect (remove) endometriosis implants/scarring. Pelvic physical therapy as well as acupuncture have been shown to be useful in managing endometriosis symptoms for some women.
How you can find support for endometriosis
It can be distressing to live with endometriosis, and finding support from those around you can be life changing.
- Know you’re not alone. Explore resources such as Progyny’s educational library and the “This Is Infertility” podcast, which tells the stories of many women with endometriosis. Additional educational resources can be found at American College of Obstetricians and Gynecologists and American Society for Reproductive Medicine.
- Find other women in your shoes. Check out the dozens of endo support groups on Facebook; some are even geographically based. You may also want to explore the several online endometriosis-focused communities active on other social media networks, like Reddit, and through advocacy organizations. These groups can help you cope with the physical pain as well as offer safe spaces to talk about endo’s effect on your sexual health and fertility.
- Advocate for your employer to provide a health benefit with a network of experienced providers who will take a holistic approach to treatment. The physical pain of endometriosis significantly impacts a person’s whole being, so it’s important you have access to resources that support your mental and financial health in addition to your physical health. For example, Progyny Patient Care Advocates (PCA) work with members to connect them with resources that support any aspect of a women’s health journey, whether it’s finding a reproductive endocrinologist, navigating family and medical leave, or addressing the financial stresses of fertility treatments.
How workplaces can provide support for endometriosis
Cultivating supportive work environments can make a world of a difference for those with endometriosis. Whether you suffer from the chronic condition yourself or just want to make sure those around you feel supported – here are a few things you can do.
- Normalize the conversation. Creating a culture of openness around reproductive health issues can help break the stigma. Encouraging discussions about workplace flexibility for health needs benefits all employees.
- Be an ally. Even if you don’t have endometriosis, you can be an advocate. Offer support, listen without judgement, and help colleagues navigate workplace policies that may help them.
- Provide comprehensive women’s health benefits. Many employees suffer in silence because their health benefits don’t cover specialized care. Employers can provide benefits that include access to endometriosis specialists, fertility support, and mental health resources so women can perform their best at home and at work.
Explore Progyny’s endometriosis resources
Addressing endometriosis isn’t as simple as popping an aspirin, using a heating pad, or indulging in some dark chocolate—the “normal” coping mechanisms for that “time of the month.” Managing endometriosis requires knowledge and support, and Progyny is here for you. Learn more about endometriosis and explore related resources, including infographics, podcasts, and blogs.