As Diana Whitney tells
About five years ago my period changed dramatically. I was bleeding badly, so badly that I had to change my pads every 30 minutes. I would bleed for two weeks or more and then bleed between cycles. I also had terrible clots – the clots were huge, bigger than my fist, and very painful.
At the time I was living in New Jersey and commuting to work in New York City. I took public transport and had many humiliating experiences with bleeding in my clothes. Once on the train, the blood literally gushed out and dripped down my leg. I was uncomfortable sitting, so I stood there panicking the whole time, checking the back of my pants and praying that no one could tell what was going on. Fortunately, I wore black.
This traumatic cycle lasted for months. At work, I was the last person to get up from a board meeting or conference because I was afraid I had stained the chair, which happened several times. But even with these extreme symptoms, I didn’t know anything was wrong. I normalized it in my own head. I told myself I am a woman; Women go through hormonal and physical changes.
It never occurred to me that it could be fibroids. Although my mother had fibroids, we never had this conversation. I didn’t even think about seeing a gynecologist until I talked to my sister about my symptoms. She’s a doctor, and she came to the house and looked at the inside of my eyes, the inside of my mouth, and the palms of my hands.
“Nkem,” she said, “you have to see a doctor. You literally look like you have no more blood in your body.”
Until then, I couldn’t even take a few steps without feeling like I was passing out. I immediately made an appointment for a blood test. When the results came back, the doctor called me and said, “You need to go to the emergency room straight away. Your hemoglobin level is not beneficial to life.”
It turned out that my hemoglobin was dangerously low by three. Normal hemoglobin levels in women are between 12.5 and 15. I learned that I had severe anemia for all those months of heavy bleeding.
I went straight to the emergency room where they ran a series of tests on me. They did an echocardiogram of my heart because I had a persistent cough and discovered that I had cardiomegaly or an enlarged heart. My heart had been working at overdrive trying to make up for the lack of blood in my body.
The emergency doctors wouldn’t let me go after the tests. They were afraid that if I walked out the door I could get into cardiac arrest at any moment. I needed a blood transfusion, so I was hospitalized for two or three days. It was December, just before Christmas. I was exhausted and shocked that my condition was so serious.
At the time, my providers attributed all of my symptoms to a large fibroid on the surface of my uterus. They decided not to do a myomectomy to remove the fibroid and instead put me on oral contraceptives to manage the bleeding, which was their immediate concern.
Taking the pill worked for about a year. Then it stopped working and they put me on a contraceptive injection. That was in 2017 and I’ve been on the ball ever since. I’m a slave to this shot because it improves the quality of life so much. But I know it’s just a band-aid. The only way to treat fibroids is through surgery.
In the past few years, more fibroids have grown all over my uterus. They are different sizes, shapes, and locations, some in my uterine cavity. I need good care, but when I moved to Maryland it was difficult to find a doctor. The first one I saw was terrible and very condescending. Once, while doing my ultrasound, she casually said, “Your uterus is severely distorted.”
I realized that I needed a compassionate doctor who could be a partner in my journey. I had already gone through a lot of physical trauma. My condition almost killed me. I didn’t need the added mental trauma of being abused by my doctor.
Finally, I switched providers and it’s like day and night. My new doctor explains things to me, he takes the time to listen and address my concerns. We work together as employees in my care to ensure that I am treated optimally. When he suggested surgery, I felt comfortable talking to him about the options because he is so compassionate. I am a good candidate for a minimally invasive myomectomy and we plan to do so next year.
There is a huge stigma about talking about female reproductive problems, especially fibroids. After moving, I discovered a group called The White Dress Project that is focused on raising awareness about uterine fibroids and breaking down the walls of silence that surround this condition. Fibroids are alarmingly common: about 70% of white and 80% of black women are diagnosed with them by the age of 50.
There are many racial health differences when it comes to treating fibroids. Black women are more likely to be offered a hysterectomy as our only option. We are more likely to have severe, symptomatic fibroids and more likely to be hospitalized for them. We have larger fibroids and tend to need more blood transfusions because of heavy bleeding. We also develop fibroids at a younger age. The burden on African American women is significant.
Until I found The White Dress Project, I felt like I was suffering in silence. It was liberating to find my voice and tell my story. I’m Nigerian-American and culturally we don’t share our stories when it comes to health issues. We keep them private.
But sharing your story is an important part of this organization’s mission and I can see how much I’ve grown by being a part of it. I can now share my story without fear. My own struggle with fibroids has grown into a lifelong mission of the advocacy. I feel like I am giving the gift of my story to the world so that it can help someone else.
Nkem Osian is a patient advocate at The White Dress Project, an organization dedicated to raising awareness in the country of the uterine fibroid epidemic and filling gaps in care, education and research. She shares her fibroid story to break the silence around this common but often overlooked gynecological condition. https://thewhitedressproject.org