Coping with Endometriosis

Reviewed by: HU Medical Review Board | Last reviewed: June 2018

Living with endometriosis can present its own set of challenges and situations to navigate. Below are several examples of these that a woman may need to explore.

Misdiagnosis and delayed diagnosis

Diagnosing endometriosis can be challenging, as endometriosis can present in many ways and at various points throughout a woman's life. Additionally, some women may have the condition but experience few to no symptoms, while others may experience debilitating issues related to their endometriosis. Further, endometriosis shares similar symptoms with many other conditions ranging from urinary tract infections to inflammatory bowel disease, and many more in between, which can prolong the diagnostic process as potential conditions are narrowed down, or can lead to a misdiagnosis. Overall, receiving a diagnosis of endometriosis can take quite some time, with many receiving a diagnosis five to ten years after the onset of symptoms.1

Although delayed diagnosis and misdiagnosis of endometriosis are common, and sometimes unavoidable, there are several steps you or a loved one may be able to take to help ease the diagnostic process. Several of these include:

  • Keeping a detailed symptom diary
  • Understanding your past medical history
  • Being open to talking about difficult or uncomfortable symptoms and experiences
  • Educating yourself on endometriosis and other similarly-presenting conditions
  • Finding a support group (in-person or online) to discuss your diagnostic journey with

Emotional well-being

Endometriosis is a condition that can impact some of the most intimate aspects of a woman's life, such as her sex life, her menstrual cycle, and her fertility. Although there are treatment options that exist to provide symptom relief, many women with endometriosis will battle pain, discomfort, and other endometriosis-related symptoms for a large portion of their life. In addition to the long-term management of these issues, during delays in diagnosis, a woman may visit several providers and undergo many tests, leading to high medical bills. All of these factors not only take a toll on a woman's physical health, but also her emotional and mental health as well.2

Common methods of improving emotional well-being and promoting strong mental health include keeping open lines of communication with those close to you, practicing mind-soothing activities such as yoga, meditation, journaling, or coloring, participating in enjoyable hobbies, finding new activities that you enjoy, and taking care of your physical health by exercising and eating right.

Navigating sex

One of the most common symptoms that women with endometriosis report experiencing is pain during sex. This pain is also called dyspareunia. Each woman's experience with dyspareunia can be different. For some, the pain they're experiencing may be upon penetration, while for others, it may be a pain that is experienced deeper in the pelvis. The severity and characteristics of a woman's pain during sex can also vary greatly.3,4

Although it may be difficult, talking about your sexual experiences with your partner is key to maintaining a healthy relationship across all aspects of life. Hiding your pain and discomfort from your partner may cause you to retreat or lose interest, which your partner may perceive as something they've done wrong. A kind, compassionate partner will understand what you're going through and will want to work with you to find what's best for the two of you. If your partner is confused or needs more information on what you're going through and how to best support you, it may be a good idea to take them to a support group meeting with you or a healthcare appointment with your provider. These actions may make your diagnosis and symptoms more concrete for your partner, and give them a space to ask questions and learn more.

Additionally, there are ways to potentially reduce endometriosis-related pain during sex, including, but not limited to, trying new positions, practicing other non-vaginally penetrative sexual activities, increasing foreplay time, using lubricant, having sex at different times during your menstrual cycle, and utilizing over-the-counter pain relievers occasionally.3,4

Work and endometriosis

Endometriosis may impact a woman's ability to work or to complete her job effectively. Debilitating endometriosis-related symptoms such as chronic pelvic pain or painful periods may make it difficult for a woman to get to work or handle tasks efficiently. Although it may be difficult at times, in many cases, working part- or full-time may be necessary to remain financially stable. This means that women with endometriosis may be required to navigate the workplace, despite all they are having to endure.

A woman may choose to try to pursue ADA (Americans with Disabilities Act) accommodations at work, however, this may be a long and difficult process for some.5 Other methods of getting through the work day involve preparing yourself for an onset of symptoms at work, keeping mood-boosting items, videos, or snacks on hand, confiding in a trusted coworker to have an ally at work, taking regular breaks, including walking breaks, and staggering challenging tasks around how you and your body are feeling.

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