'Endo has stolen so much': Traveling with endometriosis requires planning

Kayli Thompson
Special to USA TODAY
  • Endometriosis is an often painful disorder in which tissue grows outside the uterus.
  • One mom makes plans with parents she trusts to take her child to and from sporting events in case she's hit with a flare.
  • Packing efficiently, staying hydrated, bringing healthier snacks that don't cause inflammation and booking a place with access to a kitchen can help, too.

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"I have to pull off. I'm sorry, I know we have most of our drive left, but I can't" is what I said through tears to my 8-year-old daughter in the middle of our summer 2017 cross-country road trip that started in New York.

It was the Fourth of July, and we were somewhere between Washington and Oregon, headed for Central Point, Ore. We had already stopped once, and I hated making multiple stops. I felt bad, but I couldn't drive anymore. Not in that moment. I was experiencing severe menstrual cramps that were making me double over in pain. I was trying to push through and keep driving, but they got so bad I started crying. 

I have a high tolerance for pain and don't cry until something is really painful. For reference, I had a near-eruption of my appendix and my daughter was breached at 37 weeks, leading to my OB-GYN manually turning her – neither of those painful events elicited tears. 

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I realized I couldn't drive because between the blinding pain and tears, I couldn't really see or focus on the road. It wasn't ideal. In fact, it sucked because it meant we would be arriving late. Normally, not a big deal, but we were going to a friend's house for dinner. 

I didn't know it at the time, but it was part of my endometriosis and pelvic disorder dysfunction, a diagnosis I wouldn't receive until three years later.

Endometriosis is a disorder in which tissue grows outside the uterus. Nationwide it affects an estimated 2% to 10% of people who menstruate.

Not all health agencies classify endometriosis as a disability. The World Health Organization, for example, categorizes it as a "chronic disease."

Computer illustration showing the female reproductive system, including the bladder, uterus and ovaries. The endometrium (lining of the uterus) is extending outside the uterus, into the fallopian tube, ovary and abdominal cavity, in a disease called endometriosis. It causes intense pain in the pelvic region.

From 2012 forward, I had started experiencing radically different period symptoms, from extreme cramps to sharp pelvic pain to lower back issues to bloating so severe I looked four months pregnant. I never did anything about it because I assumed it was just part of my menstrual cycle, that it was just what women go through. 

Christine Pearl, 32, of Buffalo, N.Y., suffered for 18 years before a diagnosis. It has ruined many trips for her, including international ones. She learned to always pack a large supply of pads, disposable heat pads, crackers, ibuprofen and anti-nausea pills.

"Endo has stolen so much of my quality of life that I refuse to let it ruin my favorite hobby (traveling) that brings me joy," Pearl said.

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I certainly wasn't going to let it stop me from traveling. I've been traveling with my daughter since she was 18 months old when I drove us 16 hours to the Outerbanks of North Carolina.

We've been to two countries and 39 states since that first trip. Many of those trips involve driving since we love road trips and it's cheaper than flying. Plus, we feel like we see so much more, like near the end of our cross-country road trip when we saw signs for the world's largest rocking chair in Casey, Ill., and discovered a small town full of big things. That turned into one of our favorite travel memories that gave us many hilarious photos.

All this driving taught me how to keep a child busy in the car when there is no one else with you, an important skill as a single mom. 

Worldwide Endometriosis March in Paris on March 25, 2017.

So here I was, in a random parking lot off of Interstate 5, trying to find some relief (which wasn't easy considering our car was packed so my seat couldn't exactly recline more than a few inches). My daughter was rattling off a bunch of questions, full of life and energy the car couldn't possibly contain. It was day 16 on the road, and the novelty was wearing thin. I knew it; she knew it. 

I finally asked her to watch something, that Mommy needed to take a nap and required some quiet. It took some convincing since she was tired of the same five downloaded movies and had a strong desire to talk. I begged her to give me half an hour. She relented. Unfortunately, she was used to seeing me in this much pain. 

Planning ahead while traveling with endometriosis

Traveling with kids makes things even more difficult.

Sara Borgeson, 47 of Washington, D.C., was diagnosed at 31 after 17 years of symptoms and has traveled extensively, especially with her kids for travel sports teams.

Borgeson ensures she has less effective pain meds so she isn't knocked out for the day (many endo pain meds can make users drowsy) and lots of heating pads. She also makes plans with parents she trusts to take her child to and from the sporting event in case she's hit with a horrible flare. She has pinpointed certain activities and foods that aggravate it so she knows what to avoid, especially when traveling.

As I laid in the driver’s seat with my eyes clenched shut, I went over my options. I had already taken ibuprofen so all I could do was pray it would kick in soon. I gritted my teeth through the waves of excruciating cramps, folding my body in half more and more. Sometimes they would end and I only had to endure the shooting pain in my pelvis that radiates up my back and down my legs. This is what I was hoping for. I just needed the most intense pain to go away.

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Within an hour, the pain subsided and I could fully open up my body and breathe. The worst behind us, I pulled back on the highway with dry eyes and plans on how I could prevent this in the future.

Ivy Bagley, 42, of North Carolina, started symptoms at 20 and didn't receive a diagnosis until 38. She learned to make travel work for her by packing efficiently so it's easier during a flare, staying hydrated, bringing healthier snacks that don't cause inflammation, and booking where she had access to a kitchen or at least a microwave and refrigerator.

"Make certain to plan breaks and if an option, time to rest after a long travel day," Bagley suggested.

For me, those plans looked like having stronger medication on hand (especially once I saw a doctor) and becoming flexible. I also realized it was crucial to schedule trips around my cycle, I could travel more easily if I made sure to stay home during my period.

I needed to give myself grace and time to heal. That way, if an episode happened, it didn't bring the whole trip to a screeching halt, making travel with my daughter much more enjoyable and worry-free (at least endo-associated). 

Kayli Thompson is a reporter based in Houston. You can follow her on Instagram @KayliMay87

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