There's no rulebook on how to balance a full 16-credit course load, a part-time gig, friendships, a slew of first-times, and more all while carrying the burdensome chronic condition of endometriosis around like a 50-pound backpack. That's why we asked post-grad endo women to dish on how they did it, big-sister style, for a cheatsheet collegiate endo women from NYU to Perdue, and Brown to UC Berkeley can rely on to help them navigate the ups and downs of undergrad life.
1. Get a Second, Third or Fourth Opinion, Always
If your school nurse just doesn't get it, tell her, Bye Felicia!, and seek healthcare elsewhere.
“I was going through 10 to 12 tampons a day, and it seemed like my period was three weeks long between when the PMS would start and the bleeding and stabbing pain of cramps would end. The doctor at my school’s health center thought I needed to be put on birth control. He said it was just heavy periods. The pill made me crazy and didn’t do anything for my periods, in fact, it just made it worse.” —Alice Keck, 38
2. It’s Okay to Pass on the Party
Keep your FOMO in check because let's face it: there will always be another fete.
“It’s not an easy thing to explain to your friends that you’re staying in because you have your period. They think you’re being over dramatic or punking out. I had a few friends in my house that knew and were cool about it, but if I didn’t feel good, I would shut my door and unplug my phone.”—Harmony Judge, 22
3. You’re Not a Failure, Just Because Your Grades Aren’t Great
To quote the world's second richest billionaire, Bill Gates, "I studied everything but never topped...But today the toppers of the best universities are my employees."
“I had to miss class every now and then because I couldn’t stop throwing up, or I was in so much pain that I couldn’t stand up. College professors don’t care if you’re chronically sick, they just think that you’re trying to get out of work or coming to class. My grades did suffer a bit my sophomore year.”—Christina Herman, 30
RELATED: Listen Up, Teens: Endometriosis Can Be Present During Your Very First Period
4. Don’t Be Scared to Speak Up
Advocate for yourself because you know your body better than anyone else.
“I had a 2.5-hour class, twice a week and the professor was this older guy. I was aware of the Carrie-esque situation going on in my pants and asked to use the restroom. He said no. I said it was an emergency. He said it didn't look like there was anything wrong with me, so I needed to wait until the break. I got up to go, and he yelled at me in front of the whole class. I was so mad that I yelled back at him, 'Look, man, I need to change my tampon before I leave a puddle of blood on your floor. If you have a problem with that, I suggest you take it up with the dean. I'm going to the bathroom.' He didn't say a word.”—Katy Greenburg, 20
5. It’s Okay to Stay in Your Comfort Zone
Endo can feel like such an out-of-body experience. Hunkering down and studying in familiar territory, with a support system is totally understandable.
“I actually decided to stay home and live with my parents while I went to a local college because I was going through so many medical issues that couldn’t be figured out. All of my doctors were in town, and I wasn’t going to risk finding answers for my health by traveling.”—Alyssa Saratowski, 26
6. Stock Up on Supplies—And Keep Them Handy
You never know when Aunt Flo will throw you for a loop.
“One of my part-time jobs was as a nude model for art class. One day I had started my period and was modeling. I bled through my tampon in less than an hour and had to change it during a class break. I would go through at least six super plus tampons the first few days of my period. I had to sleep with a tampon in, a heavy duty pad with wings and a towel underneath me.”—Elayne Carringer, 48
7. Find Your Tribe
Afraid to tell your peers you have endo? Fear not, you might have more than a few endo sisters in your midst.
“I felt like such an outsider suffering from endometriosis. It wasn’t until I started speaking up about my awful periods and horrible sex experiences with some other girls in my dorm that I realized I’m not alone. So many of us suffer in silence or know someone who is dealing with similar issues. We formed a support group, through the women’s studies department and posted flyers in the health center of our giant Big 10 school. It felt so good to be able to help others in a similar situation. Endo sisters unite!”—Sara Bashinsky, 20
8. Rest Is Best
Sometimes, the snooze button is life.
“I went to college with huge ambitions to do it all. Make dean's list, contribute to the school newspaper, work a part-time job and have a banging social life. But it didn’t exactly work out that way. I felt like a big lazy failure because I could sleep all night and wake up even more drained. Endo can be very exhausting so rest when you need to.”—Bailey Dumford, 21
9. Hold Out For a Patient Partner
Painful sex is a common symptom of endo, which is why it's important to find a lover who listens and lets you lead the way.
“I didn’t have sex until I got to college and I wasn’t prepared for how excruciating it would feel. I’m talking stabbing pain and what felt like razor blades slicing my vagina. I had to stop. My boyfriend was understanding but dumped me shortly after that. It took a long time for me not to freak out when things got frisky so I felt like a prude. Recently, I met a guy who seemed sweet and understanding, and I explained my issues to him, and we figured out ways to pleasure each other without the horrific pain of intercourse.”—Kristen Jones, 19
10. Focus on the Positive
Your vibe attracts your tribe.
“This may sound totally hippie-dippie but it’s important to surround yourself with positive people. Get rid of all the toxic things and people that drag you down and drain your energy. Endo does that enough on its own. It’s amazing the difference you can make in your own life if you push away all that toxicity. If your roommate is an uncaring, mean girl, by all means ask for a room change.”—Keisha Williams, 21