What Your Friend with Endometriosis Wants You to Know

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When I first received my endometriosis diagnosis more than a decade ago, I remember sharing the news with a close friend.

"Does this mean you won't be able to have kids?" she asked.

I was caught off guard by the question. I was barely in my twenties and didn't want kids immediately, but concern about my future fertility had been on my mind since my diagnosis, especially because I grew up hearing about my mom's struggles with endometriosis (researchers believe there may be a genetic component to the disease). Hearing someone else verbalize my worry only heightened it. (Related: What It's Like to Battle Endometriosis, Freeze Your Eggs, and Face Infertility At 28 Years Old and Single)

I know that this friend didn't mean to make me feel bad. She simply didn't understand how to offer her support.

A Quick Refresher On Endometriosis

If you're not familiar, endometriosis is when tissue similar to that which lines the uterus grows on other internal organs, often in the lower abdomen or pelvis, causing inflammation as well as a slew of other side effects, which can include:

• Painful, heavy periods

• Pain during sex

• Painful bowel movements

• Fertility challenges (Roughly 30 to 50 percent of endometriosis patients struggle with infertility, according to the Endometriosis Foundation of America.)

• Bloating

• Constipation or diarrhea

• Chronic fatigue

In some cases, people with endometriosis may actually experience little to no pain, according to the Mayo Clinic. Yet, studies show that the intensity of endometriosis pain doesn't always correlate with the disease's severity.

With roughly 200 million people worldwide suffering from endometriosis, it's likely that you know someone with the disease, even if they don't feel comfortable sharing their experience.

The Long Road to Diagnosis

Not only is endometriosis a devastating condition that currently has no cure, but getting a prompt diagnosis can often be its own battle. Symptoms may be dismissed as "normal" period side effects, while others overlap with symptoms of different conditions such as pelvic inflammatory disease or IBS, which can make an accurate diagnosis challenging.

Dr. Kathy Huang, director of the Endometriosis Center at NYU Langone, describes endometriosis as a "very emotional disease" saying "a lot of times patients have been undiagnosed for many years. They've been suffering in silence. It's much more than just a physical condition."

Shame, stigma, or uncertainty about endometriosis symptoms also contribute to a delay in diagnosis, according to data from a 2020 study. Another report from Endometriosis UK showed that 62 percent of people between the ages of 16 and 54 said they put off going to a doctor about their endometriosis symptoms because they don't feel their symptoms are serious enough to warrant a visit with a doctor, they feel embarrassed about discussing their symptoms, or they worry they wouldn't be taken seriously. (Related: Why Is It So Hard for Black Women to Get Diagnosed with Endometriosis?)

To further complicate things, while imaging (think, an MRI) can be an effective diagnostic tool in some endometriosis cases, the most accurate way to get a diagnosis is via laparoscopic surgery. With the additional cost, recovery time, and discomfort, patients may delay the procedure or avoid it altogether, furthering the time it takes to get a diagnosis.

In fact, it takes the average person between seven and ten years to receive their diagnosis, according to The Endometriosis Foundation of America. During this time, patients have reported experiences of gaslighting from loved ones or even medical professionals about their pain, while also dealing with an endless parade of appointments, debilitating symptoms, and mental health struggles.

What It's Like to Live with Endometriosis

"Living with endometriosis can cause so much trauma," says Lara Parker, author of the book Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics, who was diagnosed with endometriosis in 2012. "Medical trauma. Trauma from not being believed. Trauma just from living with these depths of pain."

Dr. Huang says she's seen first-hand how the disease wreaks havoc on patients' mental health and personal relationships, in addition to the physical symptoms they face.

"There was one day I saw two patients who were getting divorced because they were unable to have intercourse with their husbands due to endometriosis symptoms", says Dr. Huang. "I can't remember the last time I saw patients in my office and didn't have at least one crying to me about how their endometriosis is impacting them."

The Secrecy Around Endometriosis

Yet despite the staggering number of women who are seriously impacted by the disease, conversations about endometriosis are often dubbed as "TMI."

Unfortunately, "in general, women's reproductive health is relatively taboo and sometimes even considered gross," says Christina Rush, Ph.D., a licensed clinical psychologist at Three Birds Counseling who specializes in reproductive health.

And, the secrecy around female health issues dates back decades, explains Johanna Hyland, L.C.S.W., owner of Healing Heart, who specializes in supporting women dealing with infertility. "It wasn't that long ago that husbands typically weren't present for the births of their children because it was viewed as inappropriate for them to see their wives 'like that,'" says Hyland.

While society has undoubtedly come a long way when it comes to reframing the conversation around women's health, there's still significant progress to be made as we continue to normalize talking about conditions that impact the reproductive system. As we take away the shame and secrecy surrounding these topics, we make it feel more acceptable for people battling endometriosis to seek support and share their struggles.

Why Talking Openly About Endometriosis Matters

"It's been life-changing for me to be able to say, 'I'm struggling. I'm not doing well,'" says Parker "Allowing myself to acknowledge my pain and feel whatever it was that I was feeling helped me to be able to better handle my mental health and be better prepared for the bad days."

Personally, I feel a certain kinship when someone mentions their endometriosis. There are so many people around the world dealing with the disease, and yet it's not every day that you find someone willing to talk about their experience.

That's at least partly because "infertility and reproductive issues can feel like a dirty little secret," says Hyland.

If someone you care about has endometriosis, here's how you can provide compassionate, effective, and judgment-free support for them.

How to Support Someone with Endometriosis

Avoid focusing on solutions.

"The best thing you can do is validate your loved one's feelings," says Hyland. "This might sound like saying, 'What you're going through sounds very difficult. Thank you for sharing. I'm always here to listen."</p>

Rush is a fan of offering specific, actionable help. "Do they want soup, a heating pad, or a child-free afternoon?" she says.

She also urges patience if your friend with endometriosis has to cancel plans due to symptoms. Know that it's not indicative of how much they value spending time with you.

Don't offer medical advice.

Though your suggestions are probably well-intentioned, focus solely on supporting your friend and not on offering tips.

"You don't have to try to fix us," says Parker, of those with endometriosis. "You cannot fix this for us. We just want to know that you're there and that you care. People may think that asking me if I've tried yoga is them helping, but to the sick person it may sound something like, 'Why can't you get off your lazy ass and actually try to help yourself?'"

Be present for appointments, if invited.

If you're looking to take a more active role in your loved ones' endometriosis journey, simply being present at doctors' appointments is an effective way to do it, says Dr. Huang.

"Endometriosis is such an isolating condition that when someone you love shows up, it's incredibly helpful for the patient," she says. "Patients sometimes get nervous, so having someone else there to help remember what the doctor said and then having a conversation with them about it afterward, that's tremendously helpful."

On the flip side, if you're the one battling endometriosis, you might consider sharing your experience with the disease, if you feel comfortable doing so. Unfortunately, talking about endometriosis may not feel as socially acceptable as if you were battling, say, a knee injury, but this perpetuates the secrecy and silence associated with endometriosis.

Ten percent of women of reproductive age have endometriosis, but sharing that statistic with patients won't make them feel any differently about their own diagnosis, explains says Dr. Huang. "Emotionally you may still feel alone, even though rationally you know you're not," she says.

While you're under no obligation to go into detail about how endometriosis has impacted your life, many people find that doing so can be cathartic. This could mean sharing with a partner, therapist, or a trusted friend. Other patients might find comfort in joining online support groups.

"Living with what felt like this giant secret about the pain that I was experiencing day-in and day-out was eating me alive," shares Parker. "In a way, I had to open up about it in order for my brain to be able to process what was happening to me and what I was going through."

If you do choose to share, know that your vulnerability may help others finally receive their own diagnosis thanks to learning about your familiar symptoms. For those who have already been diagnosed, seeing you be open about your journey may help them feel less alone.

"The more that people are willing to be vulnerable, the more that this dialogue and society will change," says Hyland.