How a chronic illness taught us to be advocates for ourselves

Olivia Arganaraz and I both started our periods when we were 11. We suffered excruciating cramping and other symptoms that interfered with our lives. Neither of us sought help until we were in our early 20s.

Even though we were in pain, we thought that menstrual misery was just part of being a girl. As adults, we realized that spending days in bed during our periods or mid-cycle wasn’t normal. Something was wrong.

We were both eventually diagnosed with endometriosis, also known as endo for short. I was diagnosed in a matter of months, but Olivia’s diagnosis took nearly a decade. For many women, a delayed diagnosis is much more common.

According to the American Congress of Obstetricians and Gynecologists, about 1 in 10 women has endometriosis. There’s no known cure for endo, only treatment options and pain management. It’s an invisible illness. We often look healthy, even when in pain.

That’s why it’s so important to talk about what we’re going through so we can offer support, learn from each other, and know that we’re not alone.

Olivia’s a 32-year-old psychology major at Antioch University, living in Silver Lake, California. I’m a 38-year-old freelance writer and editor based in Nashville, Tennessee. This conversation has been edited for brevity and clarity.

Olivia: I went to an endometriosis march, and from the talks I attended, and the conversations I’ve had with other women with endo, it seems to be a fairly typical experience that it takes a good 10 years or longer to be diagnosed. I spent many years seeing doctors for my symptoms and being turned away.

Jennifer: And diagnosis or not, doctors just don’t take you seriously. A male ER doctor once told me, “You don’t take a Ford to a Chevy dealership.” Also, the OB-GYN who originally diagnosed me when I was 21 told me to get pregnant as a cure. I thought, Anything but that! I was applying to grad school.

O: I’ve been asked if I have a therapist because perhaps my “problems” are psychological! I struggle to find how a doctor can respond that way to a person describing a pain so immense that they’re passing out in airport bathrooms, at the movies, and alone in their own kitchen at 5 a.m.

J: Your story makes me get teary-eyed, and I’m sorry for what you’re going through. I’ve had similar experiences. I had five laparoscopic surgeries over the course of 14 years to excise growths. I continued to have laparoscopies because I always had a reoccurrence of growths and, with that, the concern of adhesions. I also have had complications with ovarian cysts. None of the laparoscopies helped relieve my pain.

O: I just can’t imagine going through that many surgeries. Although I know it’s always a possibility that I may need more in my future. In February, I had laparoscopic surgery where they excised my adhesions and growths and took out my appendix. I had my appendix removed because it was stuck to my ovary. Unfortunately, the pain has persisted. What’s your pain like today?

J: Over the years, I asked my doctors for a hysterectomy, but they refused on the grounds that I was too young and that I wasn’t capable of making the decision yet about whether or not I wanted children. So infuriating! I finally had my hysterectomy just seven months ago, after exhausting all other options. It’s brought me more relief than anything, although it’s not a cure.

O: I’m so frustrated and sorry to hear about doctors refusing a hysterectomy. It falls in line with this discussion we’ve been having about doctors negating much of what women with endometriosis experience. In saying no, they’re telling us that they’re the experts of our own bodies, which isn’t true in the least.

J: It’s hard enough living with the pain, but then we get brushed off and treated poorly, too. What’s your doctor suggesting as a next step for you?

O: My gynecologist tells me I should look into medical menopause or getting onto chronic pain management. She has also mentioned getting pregnant.

J: I tried the shots to induce a temporary menopause when I was 22, but the side effects were awful, so I quit. Pain management really became my only option. I’ve tried a variety of anti-inflammatories, muscle relaxers, and even opioid pain medications during really tough days. My prescription list is embarrassing. I always have this fear that a new doctor or pharmacist will accuse me of having a drug habit. Anticonvulsant meds have provided the most relief, and I’m grateful to have found a doctor who prescribes them for off-label use.

O: I’ve been getting acupuncture with some good results. And I’ve also found, through contacting other women with endometriosis, that diet is a huge component toward feeling better. While it’s helped my inflammation, I’m still left with crippling pain many days. Have you tried diet or alternative therapies?

J: I’m vegetarian and gluten-free. I started running in my mid-20s, and I think that’s helped with some pain management, thanks to the endorphins, the movement, and just the concept of taking time to do a nice thing for myself. I’ve always felt such a loss of control over my life with this disease, and running and training for races gave me a little bit of that control back.

O: I have what they call endo belly quite often, although this is becoming less frequent with changes in my diet. I’m taking probiotics and digestive enzymes to help with the bloating. It can become so painful that I’m completely disabled.

J: Endo belly is painful, but the idea of body image also comes to mind. I’ve wrestled with it. I know I look fine, but it’s sometimes hard to believe that when you’re having severe abdominal pain and swelling. It changes your perception.

O: How has the hysterectomy affected you and your relationship with femininity? I’ve always wanted children but this diagnosis has helped me discover why and in what ways I might be disappointed if I’m unable to. Because pain and a potential testosterone deficiency takes away much of my sex drive, I’ve had to really examine for myself what it means to be a woman.

J: That’s such a good question. I’d never had the desire to have children, so I’ve never thought of motherhood as something that would define me as a woman. I understand, though, how for women who want to be mothers it’s a big part of their identity and how hard it is to let that go if fertility is an issue. I think I more so grappled with the idea of somehow losing my youth by giving up my childbearing organs. How else has endo affected your life?

O: I cannot at this moment think of anything that having endo doesn’t effect.

J: You’re so right. For me, a huge frustration is when it interferes with my career. I worked as a managing editor for a magazine publishing company for a long time, but finally went freelance so I could have more flexibility when in pain. Before, I rarely took vacation days because they were eaten up with sick days. On the other hand, as a freelancer, I don’t get paid if I’m not working, so taking time off from work to have my surgeries or when I’m sick is also a struggle.

O: I find that because I can look okay to someone from the outside, it’s more difficult for people to grasp the pain I might be in at any moment. I tend to have a funny reaction to this where I act as if I’m fine! This often backfires and I’m bedridden for days.

J: I do the same thing!One of the hardest things for me is to navigate and learn that I have limitations. I’m not going to be like everyone else. I’m on a special diet. I do my best to take care of my body. I have to stick to certain routines or pay the price with fatigue and pain. I have to stay on top of my health with doctor’s appointments. I have to budget for medical emergencies. All of this can feel overwhelming.

Having a chronic illness can become a full-time job, so I’ve had to learn the word no. I sometimes don’t want to add more to my plate, even when the activity is fun. At the same time, I try not to let endometriosis hold me back when there’s something I really want to do, like take a trip. I’ve just had to become more intentional with my time.

O: Yes, living with endometriosis has become more of an emotional journey than anything. It’s about navigating my body and my time in an intentional way. This discussion has been powerful for me in highlighting these things as self-care and self-advocacy, rather than as burdens and reminders of the life I used to have or want to be living. Right now, it’s difficult — but it hasn’t always been, and it won’t always be.

J: I’m so glad to hear that this discussion has been empowering. Bouncing ideas off someone else who’s going through what I’m going through is immensely helpful and soothing. It’s easy to get trapped in a “woe-is-me” mindset that can be dangerous to our well-being.

Having endometriosis has taught me so much about self-care, standing up for myself when necessary, and taking charge of my life. It’s not always easy to maintain a positive attitude, but it’s been a lifeline for me.

Thanks for chatting, and I wish you the best as you move forward with finding pain relief. I’m always here to listen if you need an ear.

O: It’s been wonderful getting to talk with you. This is a powerful reminder of how important self-advocacy is when dealing with a disease as isolating as endometriosis. Connecting with other women dealing with endometriosis provides me with hope and support in times of distress. Thank you for allowing me to be a part of this and providing me the opportunity to share my story with other women.

Jennifer Chesak is a Nashville-based freelance book editor and writing instructor. She’s also an adventure, travel, fitness, and health writer for several national publications. She earned her Master of Science in Journalism from Northwestern’s Medill and is working on her first fiction novel, set in her native state of North Dakota.