Health

9 Things No One Tells You About Living With Endometriosis

In 15 minutes flat, I can go from feeling fine to being in such intense pain that it brings me to tears. This is a regular part of my life with endometriosis. For so long, I felt isolated in dealing with this type of pain and with my overall endo struggle. Thankfully, in today’s digital age, many endo warriors are able to connect like never before.

I’ve found a lot of solidarity in using various online platforms to talk to other people who have endometriosis. It helps us realize we really aren’t alone, no matter how much it can feel that way. Although our battles can be so similar, we also learn from each other because each person ultimately has a unique experience with this illness. Also, we get to commiserate about how much endometriosis sucks.

If you’re in need of some of that comfort and insight, you came to the right place. Whether you’ve known you had endometriosis for years or you’re just starting to suspect it’s the culprit behind your pain, here are some facts of life with endometriosis.

1. The pain can truly be incapacitating.

People without endometriosis may know that pain is a classic endo symptom that happens when the tissue lining the uterus (or something similar to it) grows where it shouldn’t. But they can never really know just how debilitating the pain can be.

“It’s not just pain in my abdomen or pain in my pelvis,” Lara Parker, 28, an endometriosis awareness advocate who describes her illness as “a monster,” tells SELF. Parker speaks candidly about her diagnosis on her social media accounts. “It completely wreaks havoc on my entire body in every possible way,” she says.

Dealing with this level of pain on a regular basis basically gives people with endometriosis nerves of steel. “We have the best superpower ever because [we’ve] learned how to navigate through life and still try to function,” April Christina, 34, an online endometriosis awareness advocate who organizes a brunch in New York City to help connect those with endometriosis in need of support, tells SELF.

But that can also make us used to the pain when, in reality, it should never become just another regular part of our lives. In the past, Maggie Bowyer, 21, felt like they needed to push through the pain no matter what, even when it was hitting a 9 out of 10 on the pain scale and they should have rested. “I thought it was normal for my body to feel that way,” says Bowyer. “[But] I can take breaks. I wish I knew that long ago.”

Leah Jones, 24, had a similar experience. “You can’t physically see something wrong, but there is,” Jones tells SELF. “People swallow their pain and push forward.”

That’s the bottom line about the pain, really: Even though pain is common with endometriosis, it’s not normal, Roo N., 27, who helps others with endometriosis find their footing through her online platforms, tells SELF. It’s so, so valid to seek help for your symptoms, Roo adds.

2. Symptoms don’t only happen when you have your period.

I deal with endometriosis symptoms even when I’m not on my period, as do many of us. Yes, debilitating pain while you have your period is a major symptom of this condition. (Endometriosis lesions are thought to bleed at that time, which can cause or exacerbate pain.) While at a former job, Allishia Rahn, 24, routinely had to work from home for the first few days of her period because the pain was so bad. Over time, colleagues reacted negatively to her working from home, she says, and she wound up leaving the company.

But endo can be much more far-reaching than that one part of the month. Christina knows this reality too well. It annoys her when people brush off endometriosis with, “Oh, some periods are really painful.”

“No. No. No,” she says. “Our cramps happen whenever [they want] to.”

In reality, the pain can happen during sex, when you’re going to the bathroom, or at any random time, the Mayo Clinic explains. Endo can also cause symptoms besides pain like diarrhea, constipation, nausea, and fatigue, which can all be worse during your period but won’t necessarily disappear outside of it. Also, infertility, the biggest endo complication (endo can cause scar tissue and organ dysfunction that might make it hard to get pregnant), obviously isn’t limited to when you have a period.

3. Endometriosis doesn’t only affect women.

Endometriosis can affect anyone who menstruates, regardless of their gender identity. Not only does Bowyer, who is non-binary, have to bear the brunt of endometriosis as a condition, but they also deal with the misconception that endometriosis is a gendered illness. People often think of endometriosis as “a woman’s disease,” which it isn’t. “Endometriosis has definitely contributed to my dysmorphia,” Bowyer says.

People, including doctors, have messed up Bowyer’s pronouns and made assumptions, like that Bowyer wants to get pregnant at some point and might experience a break from endo symptoms as a result. (Symptoms can go away temporarily for some pregnant people because you don’t ovulate when you’re pregnant, which interrupts the hormonal cycle that can cause endometriosis lesions to bleed and cause more pain.) “I’ve never wanted a child by birth,” says Bowyer. “[It’s] such a weird place to be in.”

4. Trying to get a diagnosis can be exhausting and frustrating.

The only way to definitively diagnose the condition is through a laparoscopy (minimally invasive surgery) to confirm you have endometriosis lesions, according to the American College of Obstetricians and Gynecologists (ACOG). That’s a pretty high barrier to entry for getting an answer to what’s going on with you.

Based on a patient’s symptoms, a doctor can make an educated guess that they have endo without performing the surgery. But endometriosis is a really complicated condition that even specialists are still trying to understand. All of this combines to make getting a diagnosis for endometriosis a notoriously difficult process.

Exactly how long the whole thing takes can vary from person to person. For me, it took almost a decade of attempts to finally wind up with a doctor who recognized my symptoms for what they were. That didn’t happen until the summer of 2015, when I had to go in for emergency surgery due to symptoms from the progression of cysts and fibroids on my ovaries.

Bowyer recently got their diagnosis in August 2019 after years of symptoms. “I was fighting with doctors, and now I feel like I have an answer,” they say. “It took a decade to get an answer for my pain.”

The diagnostic process takes a lot of advocating for yourself, which can be really exhausting but is often invaluable. “People actually listening to their bodies and not taking no for an answer, especially when [they] know something is wrong, is key,” says Christina.

Unfortunately, even receiving a diagnosis can cause a whole other emotional roller coaster. “I felt relieved [and] sad at the same time,” says Christina. It’s vindicating for someone else to confirm that your pain is real, but being happy that you’re right about having a chronic illness feels pretty weird. It also means you’re now saddled with a lifelong burden, which is a really hard reality to accept.

5. People might suggest a lot of ridiculous “cures” for your endometriosis.

While getting an endometriosis diagnosis can offer some measure of relief, it also means finding out there’s currently no proven cure for your symptoms. Upon hearing that news, Rahn “instantly started to cry,” she tells SELF. For my own part, it took years to come to terms with the fact that this is a progressive illness I’ll have to manage for the rest of my life.

Before my diagnosis, in my mind, there was always a solution. Even though that’s not true for endo, that doesn’t stop people from suggesting random, ineffective things they’ve heard will not just treat symptoms, but “cure” the illness.

“Drinking celery juice, going vegan, and having a baby will not cure your endometriosis,” Roo says. I understand that people who suggest these types of things mean well, but lots of times, these suggestions come across as a judgment on our lifestyles and how we do or don’t decide to manage endometriosis.

“I wish people realized it’s chronic and incurable,” Bowyer says, adding that someone has messaged them on social media about a detox that would “cure” their endo. “I was so irrationally mad,” Bowyer says. “This is a part of my life. It’s not going to go away.”

6. Finding out what helps your endo will probably take trial and error.

Trying to manage your endometriosis can be intimidating. Since we can’t cure it and we don’t know exactly what causes it, many people feel lost while navigating their options. “I’m still trying to figure out a good treatment for my pain,” Jones says.

Typical endo treatments include pain-relieving drugs, heating pads, hormonal medications to stabilize hormone fluctuations, pelvic floor physical therapy to help relax muscles that get too tense due to endo, and more. I’ve found some success using cannabis to manage the pain, too. You can read about various ways people with the condition deal with their discomfort here.

The gold standard in terms of actually removing lesions (rather than solely managing symptoms) is laparoscopic excision surgery, but surgeons can miss some of the wayward tissue or new lesions can grow back over time. According to ACOG, 40 to 80 percent of people still experience pain within two years of laparoscopic surgery.

This was Christina’s experience. She’d held out hope that surgery was going to fix her endometriosis so she could resume life as normal. “Ten months later, I started having pain all over again,” she says.

Ultimately, it can take a fair amount of experimenting to land on a mix of management strategies and treatments that work for you. Roo wants people to not be so hard on themselves during this journey. “It’s not about finding a cure,” she says. “It’s about pain management that will help your quality of life.”

7. It can be really, really tough to find good endo care.

Due to a lack of doctors who specialize in endo, a lot of us are left without the care we deserve. I had to see multiple doctors before I was diagnosed, and when I moved, I had to start all over again.

Bowyer tells SELF they’ve encountered doctors who don’t know terms common in the endometriosis world, like “endo belly,” a widely used moniker to describe the bloating a lot of us deal with. This has happened even with doctors who specialize in laparoscopic surgery but not endometriosis specifically, Bowyer says.

Even if you do find a specialist, they often come with a hefty price tag that, in my experience, insurance doesn’t usually cover. Add it to the list of ways endo can be financially taxing, because pain management methods like medications, heating pads, and pelvic floor physical therapy aren’t exactly free.

Rahn is still trying to figure it all out for herself. “[My] gyno gave me info, but not a lot,” she says. “I wish there was a way to get real help.”

8. The endometriosis community can be life-changing.

When I started talking about endometriosis three years ago, I finally found people who shared a connection to my journey. After feeling like no one was going through the same thing as me, it felt empowering to connect with people who understood.

“Oftentimes, friends and family don’t get it … until they see you at your worst,” says Roo. “Having a community and being supported in a safe space is so important.”

Roo’s commitment to carving out that supportive space for herself and others with endo actually played a role in Bowyer getting a diagnosis. “[Roo] has been such a big part of this journey for me,” Bowyer says. “This past March, she was posting about endo, and I was like, ‘Whoa, this is everything that’s going on with me.’ So I started doing some research, and I had every one of these symptoms.” Bowyer then documented their journey to getting a diagnosis in a series of tweets, which I followed while cheering them on. Social media’s ability to connect us in these experiences is weird and amazing.

To find this kind of support, I recommend using hashtags on Instagram and Twitter like #endometriosis and #periodssuck. Reddit’s r/endometriosis forum can be helpful as well. Also, the Flo app, which I use to track my periods and symptoms, has an anonymous chat feature where people can discuss their most private problems without fear of their name being associated with their comments. You can ask your ob/gyn or endometriosis specialist about local, in-person support groups if you’re into that, too.

9. Your body isn’t the enemy, even if it feels like it.

“I have to be on my own side,” says Parker. This strikes such a chord with me. For so long, I felt at war with my body because of the pain. I hated it because I didn’t understand that my body and I are actually in this together. Endometriosis is the enemy. Not me. Endometriosis is the enemy. Not you.

While this disease can be draining and painful, both physically and emotionally, it doesn’t define you. You aren’t alone, you are valid, and you deserve to receive all the help and comfort you need when navigating life with endometriosis.

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