Maybe you know people who get very sick around the time of their period? Maybe you are that person who has debilitating cramps that ibuprofen cannot even touch? Severe cramps, painful intercourse, chronic pelvic pain, constipation, diarrhea, back pain, infertility, frequent urination, leg pain, bloating, and fatigue are just some of the many symptoms that could indicate you are one of the 5 million patients in the United States living with endometriosis.
Endometriosis is a chronic disease where tissue, similar to that which lines the uterus, exists outside of the uterus throughout the body. While some endometriosis patients will not experience any symptoms, the presence of these lesions triggers an inflammatory reaction in the body which causes pain and adhesions in the majority of patients. Endometriosis is not only a disease that impacts reproductive organs, endometriosis can also be also be found on the bowels, bladder, appendix, gallbladder, and even in places outside of the pelvis like the sciatic nerve and the lungs. Often symptoms that patients are experiencing indicate where endometriosis could be located in the body.
Endometriosis impacts 1 in 10 women and trans men. In rare cases, endometriosis has been also found in cisgender males. Endometriosis impacts adolescents through post-menopausal patients and even those without reproductive organs. Despite the prevalence of endometriosis, it can take up to 10 years for patients to get diagnosed. One challenge in diagnosis is that while endometriomas (endometriosis specific cysts) and larger disease related nodules can be seen on imaging, such as mri’s and ultrasounds, the majority of endometriosis cannot be seen on any scan and patients will have normal test results. There is also a lack of awareness regarding endometriosis in both the medical community and society at large. Due to this general lack of awareness, along with stigmas associated with periods and women’s reproductive health, and an overall dismissal of women’s pain experience, patients suffer both physically and emotionally while trying to find answers, often seeing multiple health providers and getting several misdiagnoses. Women of color, trans men, along with all members of the LGBTQ community who are also struggling with endometriosis are particularly vulnerable and at risk for being dismissed.
Once a patient is suspected of having endometriosis there are more obstacles awaiting patients to receive quality care. For many patients with suspected endometriosis, birth control prescription is often the first line of treatment. Patients may also be prescribed other varied medical treatments which may help alleviate symptoms for some patients, although it does not treat the actual disease and patients often have recurring pain after discontinued use. Another obstacle to care is the myths circulating around endometriosis treatment. Pregnancy does not cure endometriosis. Also, a hysterectomy does not cure the disease, as the disease itself is defined as existing outside of the uterus. Some endometriosis patients who suffer with fibroids or adenomyosis, conditions which impact the uterus directly, may find relief in a hysterectomy, although may still be burdened by untreated endometriosis.
Endometriosis is a challenging disease to treat and many patients benefit from having multidisciplinary care. Going to an expert surgeon who can remove endometriosis from all impacted organs through excision surgery can bring a lot of relief to patients, especially those with many varied symptoms. In conjunction with expert surgery, patients also benefit from pelvic floor therapy, acupuncture, following an anti-inflammatory diet, pain management, and mental health support through individual counseling and finding endometriosis support groups on line. For many, these services are not all covered by insurance and patients may struggle to have access to the care they so desperately need.
As an organization dedicated to empowering individuals through providing information and quality healthcare to patients, Planned Parenthood is an important ally and often is the first provider to assist those struggling with endometriosis. Patients who are experiencing any symptoms related to endometriosis should talk to their provider about how they are feeling. It is helpful for patients to complete a monthly journal of symptoms to see if stomach distress or frequent urination happen in conjunction with their cycle. A complete medical history and listing of symptoms can piece together what may have historically seemed like multiple, separate illnesses. Also, if patients have females in their family who have had period pain or an endometriosis diagnosis, they are at a greater risk for having endometriosis and should share that information with their provider. Planned Parenthood has the important role of recognizing endometriosis symptoms early and educating and supporting patients. Planned Parenthood offers an empathetic home base of care as patients seek to find a team of providers that can support all of their complex medical needs.
Endometriosis can be a devastating disease that profoundly impacts a patient’s sexual, physical and emotional health. Patients who are educated and empowered regarding their disease, or suspected disease, have better outcomes as they face daily life with invasive symptoms. As an organization dedicated to quality health care and reproductive justice, Planned Parenthood is there to ensure that patients are supported in a way that preserves their reproductive choices and their quality of life.