Endometriosis is an often debilitating and misunderstood condition affecting more than 11% of women in the United States. It can be painful and stressful to live with. As a result, it affects not only the woman but her loved ones too.
If your partner or someone you know lives with endometriosis, it’s helpful to understand how to provide support.
What Is Endometriosis?
Endometriosis causes tissue that normally lines the inside of the uterus to grow in areas where it doesn’t belong. It often grows on the outside of the uterus, ovaries, or fallopian tubes. The tissue may also grow on other organs, like the bladder or large intestine.
“It primarily affects reproductive-age women,” Dr. Nicole Donnellan, MD, UPMC Magee-Womens Hospital, tells WPXI. “About 15% of reproductive-age women are thought to have endometriosis, but this incidence can be as high as 70% if women are seeking care for pain and/or fertility issues. Unfortunately, though, these common presenting symptoms are non-specific and overlap with a multitude of other pain syndromes.”
Women can develop endometriosis at any point during their reproductive years. But it’s most common among women in their 20s to 40s. It causes symptoms like:
- Severely painful menstrual cramps.
- Ongoing lower back and intestinal pain.
- Pain during or after sex.
- Digestive problems such as nausea, bloating, diarrhea, or constipation, especially during your period.
- Bleeding or spotting between your periods.
- Infertility.
There is no cure for endometriosis, but treatments like medicines and surgery can help relieve some painful symptoms. The symptoms may return, though. They tend to last throughout a woman’s reproductive years and often go away after menopause.
If endometriosis causes infertility, treatments like IVF — or surgery to remove the tissue growth — may help. But there is no guarantee of success.
Because the symptoms can vary, each woman’s journey with endometriosis is different. For most, though, it causes physical and emotional challenges.
Endometriosis Support Tips
Even though this is a relatively common condition, it is often misunderstood. As a result, many women don’t get the endometriosis support they need. The following tips can help you better support a loved one dealing with this condition.
Avoid giving unwanted advice
Endometriosis may cause few or many symptoms, and each case is different. What helps one person may not help another. Even though you have good intentions, it’s best to leave the advice to medical experts.
Learn more about endometriosis
This chronic condition causes far more than painful periods. The best way to show you care is by talking to your loved one so you can understand her symptoms. You can also educate yourself about endometriosis from websites like:
- UPMC’s Health Library.
- U.S. Department of Health and Human Services Office on Women’s Health.
- Endometriosis Research Center.
- The American College of Obstetricians and Gynecologists.
If possible, ask about attending a doctor’s appointment with your partner or loved one. That way, you’ll get a better sense of her symptoms and challenges. You can also offer to attend an endometriosis support group with her.
Be flexible and understanding
Living with endometriosis can take a toll physically and emotionally, especially if a woman is struggling with infertility. The way she feels both physically and emotionally can change from day to day. As a result, she may have a hard time following through with social plans or promised commitments.
Be respectful and understanding about a woman’s physical and emotional challenges, especially when they’re ongoing.
Keep the lines of communication open
Be aware that some women are open about sharing their journey, while others might prefer to keep things private. Regardless, check in periodically and ask how you can best support your loved one.
Letting someone know you’re there to provide support doesn’t always mean talking about her symptoms. Small gestures, like offering to run an errand or make dinner so she can rest, can mean the world.
Avoid minimizing her experience
Endometriosis is not a health condition you can see, but it’s always there. Living with it often means having to put on a brave face and carry on, even though it’s a struggle. One of the best ways to support someone with endometriosis is to empathize with her.
Try to avoid minimizing her experience by suggesting her symptoms aren’t severe, or the impact on her life isn’t real. Some of the treatment options, like a hysterectomy, can have life-altering consequences. A woman needs to have someone who can empathize with her experience and treatment.
For many women, living with endometriosis is like a marathon that never ends. Although there are downhill stretches, many days are an uphill battle. Support makes a big difference for women who live with this chronic condition.
Editor's Note: This article was originally published on , and was last reviewed on .