Endometriosis is not one size fits all. Our stories are as different as we are, and because of the progressive nature of the disease, the experience of living and working with endo is diverse. I had the distinct pleasure of interviewing three incredible people living and working with endometriosis. They live in different states, have had various jobs, and have distinct dreams, but their determination to thrive and support others unites their experiences.
These three perspectives are just some of thousands of different stories. Some patients are no longer able to work as the disease progresses, while others do their best to deal with endo in silence. Some experience comorbidities like anxiety or depression. Some patients have a partner to lean on for support when they can no longer work, and others take the challenge on alone. Sometimes, working with endometriosis can feel incredibly difficult, but knowing that so many others are experiencing the same challenges can make us feel less isolated.
There's no specific term for the type of pain I feel with endometriosis and PCOS. Theoretically, it's really severe period cramps, but that phrase is very minimizing because of so many other stigmas around menstruation. So I ask myself, "What do I call it? How do I make people listen to me?"
I taught middle school choir, and I truly didn't feel like I could ask for any accommodations. That actually jump-started the thoughts about whether I wanted to continue doing that work. I couldn't be on my feet from 8 AM to 3 PM in front of students all day. I mean, I could, but I would feel destroyed when I got home every day.
Once, a boss sent an email to me over the weekend. I was in a lot of pain and I needed to take a tech break to care for myself. Monday morning, he was livid that I hadn't responded! I didn't feel comfortable explaining why I needed time to rest, because everyone I worked with was male. The combination of the male staff and me at the time, a 20-year old Latina - I didn't feel comfortable explaining my situation.
Teachers need to be paid more, and music educators need to be paid more. It was very fulfilling work, but I came home every night and wanted to cry. I was singing for six to seven hours a day. There might be a chance that my career was slowly killing me from the inside out. I do think that being in the classroom was good for me, because it gave me the confidence to realize that work wasn't what I wanted. I literally went to bed a music teacher one night and woke up a psychedelic-positive psychologist.
When I see myself being done with 'The Process' of becoming this crazy Latina therapist lady, I don't know if I will disclose my endo. I feel like what I want to do doesn't match up with what the world is ready to receive. I guess I'd have to disclose on an as-needed basis, not because I want to but because I'd have to.
I don't ever know what the pain level is going to look like each day. When I went to bed last night, I didn't foresee myself staying in bed until noon because of a migraine and back pain. I had to be patient with myself this morning, because if I wasn't patient with myself, I would have lost the rest of the day beating myself up. I would ask that my future coworkers be patient with me, because I wouldn't ask anything of them that I wouldn't ask of myself.
Endo is one of the reasons I started my own business. I'm super flexible with my staff and encourage people to rest and take care. There's no reason to be at work when you're in pain.
I think that's because of my own bad experiences. I remember working a job with a manager who was uncomfortable supervising women to begin with. He had a good heart, but he just wasn't comfortable and they had no work from home policy. I would constantly have bleed-throughs during my period, so I started marching into his office when that happened. I would say, "Look. I'm going home and I need to change my clothes, and I'm not coming back for the day." I think it was helpful for him to see visually what I was going through. I mean, I was running to the bathroom every 20 minutes; it just wasn't sustainable for me to be there.
When I was an intern at a television station in Indianapolis, I felt so cautious about being far from a bathroom because of my endo. When you're a reporter, you get called out on a story and you drive all over the city or state; you might be gone all day. I remember being in situations where I wasn't able to access a bathroom and I would have to wrap toilet paper around my panties and pad because I really didn't want to bleed all over the company car!
I even lost a career opportunity because of endo right out of college. It was an entry-level position in New York. I was running late because it was day one of my cycle. By the time I get to the interview, I'd bled through my clothes. I said, "I'm so sorry, I have to go to the bathroom. It's a female health issue." The person interviewing me dismissed me so quickly once I got back from the bathroom, saying, "This interview is done, thanks so much for coming in." I don't think she knew I had endo, but she was unimpressed because I was disheveled and running to the bathroom because of my bleeding through due to endo. I was so bummed because I'd flown to New York for the interview.
Even to this day I have issues with my stage IV endo and bleeding through. I've never been embarrassed about my endo. I don't look at it as something I can control - and it's not like I enjoy it, either!
You can tell when someone isn't feeling good because of period pain, so I'm accommodating when people need to take a half day or even work from home. I trust them, and when they tell me they need time, I let them take it.
Check out Kaylyn's work at Chiavaye here.
I'm a registered nurse and I have been in the field for almost 20 years. My endo diagnosis happened in 2017, but I've had symptoms since I was 14 so I went undiagnosed for 23 years. The truth is that I diagnosed myself. After a comment from a pulmonologist, I Googled endo and said, "Oh, that's me!"
I can remember days before my diagnosis where I would miss work because my cramps were so bad. I didn't know it was endo at the time. After my diagnosis, there were a lot of times when I had to leave work early or come in late because of all of my doctor appointments and surgery prep. Currently, my boss and colleagues are pretty supportive. In a previous job, though, I had one colleague who I clashed with because she complained to my manager about me leaving early for doctor appointments. It was awkward, and it got to the point where we didn't even speak.
I'm very fortunate to have a really understanding boss now who accommodates me. I've always been very transparent about what's going on, and I've never had a situation where a boss gave me pushback. I know it does happen to others, but I've been very fortunate.
Because of COVID, I've been able to work from home, but there are some days when the pain is so bad that I can't even work at home. I'm currently on short-term disability because of my post-op complications. I'm at a point where I'm overwhelmed because it's been seven weeks since my surgery and due to the complications, I've been unable to pee without a catheter.
I'm a nurse educator now and I'm the residency program coordinator at my hospital. Sometimes I'll have 30+ nurses in each cohort, but because of my leave, they've had to postpone the program because I train the bulk of the cohort. We hope to resume that in April.
I'm usually the person who supports others with endo, and I feel bad because there are people who are reaching out but I just don't have the energy to help. I have an Instagram page for fellow endo sisters who are going through this. I've had to be honest and tell them, "Listen, I'm taking a mental break for myself and once I'm able to take care of myself, I can help you." I like being supportive, but I'm just overwhelmed right now.
This is a disease where you have to educate yourself and advocate for yourself. If you have a doctor who isn't listening to you, you need to move on to someone else. My story is pretty crazy, and I don't want someone else to be in the same situation. Half of the things I've gone through could have been prevented if I was diagnosed earlier.
Check out Latia's work on Instagram @fearlessly_defying_endo!
Our different experiences make our community stronger, and it's so important to be able to share our stories. Thank you to Andrea, Kaylyn, and Latia for being so open and authentic in these interviews - and in life!