August 25, 2022

Salewa Akintilo’s Endometriosis and Self-Advocacy Journey

Woman in a nice dress smiling

This is a firsthand account submitted through SWHR’s Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.

I’m a 29-year-old living with three “invisible illnesses:” Crohn’s disease, polycystic ovary syndrome (PCOS), and endometriosis. Chronic pain has been a part of my life since I can remember, but I didn’t get diagnoses for my conditions until I was 19, 28, and 29, respectively. Like many others, my journey has been expensive and arduous, and it isn’t over.

As a young girl, I always had stomach issues. I would eat something and less than an hour to 24 hours later, I would have terrible stomach pain and diarrhea, and I would be sweating and puking. Sometimes, I would have eaten the same thing as the rest of my family but would be the only one sick. Doctors both in Nigeria and America told my parents and I that I simply had a sensitive stomach. At 14, I started school in the United States and started getting sick very often. I had my first ovarian cyst when I was 15, and then started having pelvic pain on top of long, heavy, painful periods. My primary care provider (PCP) told me that it was all in my head and due to my weight fluctuations, so he wouldn’t do any further tests. The gynecologists put me on birth control pills. Nothing improved and I was shamed often for being so sickly because “it was all my fault.”

By 19, I had been to emergency rooms (ER) and doctors’ offices often. Sophomore year of college, the ER visits had gotten so frequent and the stomach pain so bad that my PCP referred me to a gastroenterologist. They found that my gallbladder wasn’t working properly and needed to be removed. Once that was done, they called me back to tell me that they noticed blood in my stool and some other things that needed to be observed by a colonoscopy or endoscopy. Then they discovered that I had ulcerative colitis. They suspected I’d probably had this since I was young. Let me tell you, I almost cried out with relief. Finally, I wasn’t crazy. People would listen to me and see that it wasn’t me ruining my health. There was something else going on.

I struggled a lot in my junior year of college but made it somehow. At the end, I went back to the gastroenterologist in worse pain. I underwent a pill camera and found that I had Crohn’s disease. I remembered that my PCP had brought this condition up at one point but discounted it because I didn’t have one of the common symptoms: weight loss. I was “too big” to be a person suffering from Crohn’s, he thought. This is something that I still hear today, along with “you don’t look sick.”

I was put on a new drug in 2016—after years of various medications, hospitalizations, home remedies, and diets didn’t work. Five years later, I hit remission! The new drug has been life-changing, both positively and negatively. It does make it harder for me to fight infections, so I get sick very easily and take much longer to recover. Sometimes, a round of antibiotics isn’t enough and I need steroids to help my immune system.

While I was dealing with Crohn’s, the pelvic pain never went away but the gynecologists never knew what caused it. PCOS and endometriosis were mentioned a lot, but I didn’t have two of the common symptoms, so they were discounted. Their solution was to try different birth control pills and then an intrauterine device (IUD), which made things worse. The gynecologist at that time gave me strong painkillers and ‘called it a day.’ After eight months, I found another gynecologist who removed the IUD and had me try a different IUD. The pain remained, but I wasn’t getting periods. This gynecologist told me that if the pain didn’t send me to the hospital, then it really wasn’t that bad. It took two more years of pain and imaging due to my Crohn’s disease to force my gynecologist to do further testing, only to discover that I indeed have PCOS. She told me I needed to lose weight and put me on a new drug. This ruined my body and made it difficult for me to work. Instead of sticking to my old pattern of dealing with it, in two months I sought out a second opinion from an endocrinologist. She took me off the drug immediately and we came up with a plan together that has been helping me. I had taken the time to do thorough research and find a new gynecologist. At the end, she solved the mystery of the pelvic pain: endometriosis.

Currently, I’m dealing with a bunch of negative side effects from trying different meds. But I’m being gentle with myself. That’s really the biggest thing for me now. Be it taking naps, staying in on weekends, or eating microwaveable vegetables instead of fresh veggies on days when I’m too weak to cook. I’ve also added a primary care nurse practitioner and a chiropractor to my medical team; they have been great additions. All the things that I had previously been told “didn’t exist” by past health professionals, they’ve confirmed exist and are trying to assist me in dealing with them.

My advice to others is to listen to your body and don’t give up. You have to be your champion, your advocate. It’s your life, fight for it. Then, find a health care professional that listens to you and also doesn’t give up. This journey isn’t a straight path. Science still has a lot to figure out about women’s health. Yet, it is ever evolving and I believe one day it will solve all those mysteries.

When I get sad or frustrated about my situation or every setback, I think about the saying “into every life some rain must fall”. All one can really do is weather out each storm and come out stronger each time.