More than a headache
Exclusive story by Sophie Anwuli Okolo
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More than a headache
By Sophie Anwuli Okolo
Content notes: mentions of blood, menstruation, diagnosis process
It started with bad headaches, the kind of headaches that stop you in your tracks. I was getting them nearly every day, and sometimes multiple times a day. I chalked the headaches up to stress, complicated grief, and anxiety. I mean, science tells us that our emotional and mental health can have physical manifestations in our bodies. Then, a few months later, I got my period on time, but it never left… for six weeks. I couldn’t wrap my mind around it.
Had my body reached a point of ultimate stress that it couldn’t function properly? Did I have an unknown, underlying condition?
During those weeks, I was focused on the first thought, hoping it would stop very soon. The bleeding was heavy and often painful, and I had never worn so many pads in my life.
Everything came to a head when I was carrying my friend’s nine-month-old infant down the stairs. We had just finished playing in my room and it was time for a change of scenery. I picked her up, grabbed some toys, and proceeded to walk down the long stairway when I suddenly became dizzy and lightheaded. The whole world was spinning. I still can’t explain what happened, but I lost my balance and fell down the stairs with the baby.
All I could think about was the baby — I was praying she wouldn’t get hurt. I held her tightly as I fell, feeling my body hit the stairs several times. I was a bit more than halfway down the stairs when I grabbed a handrail and stopped myself from continuing to fall. My friend ran down the stairs, immediately grabbed the baby, who was thankfully not hurt and just looked surprised, and asked me if I was hurt. I kept apologizing as she tried to comfort me until I burst into tears from the shock of it all, and the pain of the bruises. At this point, I knew something was horribly wrong because I felt like my body was failing me.
The day after I fell, I made an appointment with my healthcare provider. She was very surprised by my symptoms. She asked if I was pregnant, and I said no. She asked if perhaps I was pregnant but wasn’t aware. I said no again and felt slightly annoyed about being asked the same question. She got worried and asked a third time — she said my body was acting as if I had just given birth, especially because I was still bleeding, and diagnosed me with menorrhagia (heavy periods).
I was getting very concerned by all her questions. But I remembered my mom suffered from fibroids, which led to her getting a hysterectomy, so I mentioned it to my doctor. She ordered some blood tests to determine if I had fibroids and wrote me a prescription for ibuprofen to force stop the bleeding in 10 days. My friends who were aware of what was going on, especially a friend who had a hysterectomy, thought I had a reproductive health issue. I thought so too. I felt scared because of my mother’s experience, so I wanted answers from my blood tests as soon as possible.
But the ibuprofen didn’t fully work. There were days when the bleeding stopped and I thought it was over, but it would resume. It was debilitating and frustrating. For the sake of humor, I joked with my friends of faith that I could now understand a bit of the Bible story mentioning the woman who bled for 12 years. The ibuprofen helped reduce my sharp, stabbing headaches, but my symptoms were still unmanageable. I would leave events because of the pain, carrying extra pads so I wouldn’t stain anywhere I sat, but it happened anyway. From a church pew to a friend’s car, my flow was always heavy, and I needed to change my pad every 30 minutes to an hour. It was truly ridiculous.
The next week, my doctor followed up with my blood test results and mentioned that my prolactin levels were abnormal. I had levels of someone who was pregnant or had given birth, so she ordered yet another pregnancy test. It wouldn’t be the last test despite my insistence that I was not pregnant. I just felt defeated because they didn’t believe me. It was so hard to not be listened to. A few weeks later, I was referred to a women’s health specialist and by that time, my bleeding had stopped. She took another look at my results and referred me to an endocrinologist because prolactin is a hormone.
The endocrinologist was concerned about my abnormal prolactin levels and asked if I was lactating even a little bit. She gave me a task once I got home: to stand under a warm shower, press my breasts, and monitor if my breasts were leaking. Thankfully they weren’t — when I reported my lack of lactation to the endocrinologist, she circled back to my debilitating headaches and asked if I still had them. I said yes, and she ordered an MRI. That was the game changer.
The MRI revealed I had an adenoma — a tumor — growing on my pituitary gland at the base of my brain. The specialist explained that prolactin is a hormone released by the pituitary gland, which regulates the body's balance of many hormones. Prolactin also stimulates breast development and milk production in women. Everything now made sense! At first, I felt a huge sense of relief.
The diagnosis threw everyone for a loop, especially me. How did I get a tumor? Why did I get it? Did I inherit this condition despite no known brain health conditions in my family? I later learned that most pituitary adenomas are benign, slow-growing masses that represent about 10% of primary brain tumors. They also occur spontaneously and are not inherited. That scared me more than it being inherited because it meant I could develop any condition, not just brain tumors, at any time.
Luckily, I don’t need brain surgery, which was a big relief, and while the future is uncertain, I hope it stays that way. The doctors prescribed me a medication called cabergoline that shrinks the tumor and suppresses hormone production. So far, I’m responding so well to treatment that my endocrinologist had to reduce the dose. My headaches have significantly reduced and my period is back to normal, which is a huge relief. My prolactin levels went from abnormally high to below normal, which is a bit worrying, so the goal now is to increase them to normal levels. But I’m still glad that I no longer have debilitating symptoms.
Since my diagnosis, whenever I hear the phrase "brain tumor,” I shudder. And while I know and understand that mine is benign, I’m still fearful for my future because I worry about infertility – a condition that has been linked to my type of pituitary tumor.
To help cope with my fears and challenges, I joined a support group of folks with pituitary adenomas. Joining this group has been both helpful and scary: now I know that I don’t have to go through this experience alone, but as I learn about what others go through with this condition, I see that some stories are worse than mine.
I often wonder how my brain tumor has affected me physically, mentally, and emotionally in ways I’m not even aware of; most days, I live my life like nothing happened. Perhaps it’s a coping mechanism because I want to maintain control to feel normal. But when you’re living with ongoing trauma, it’s hard to tell what’s a sign of traumatic grief and what’s a symptom of a brain tumor.
In the words of C.S. Lewis, “No one ever told me that grief felt so like fear.”
Sophie Anwuli Okolo is a Forbes Contributor, TEDMED Research Scholar, and founder of Global Health Aging, a creative consultancy and award-nominated website featuring a broad range of news stories, research, and diverse opinions regarding healthy longevity. Her writing has appeared in Salon, MarketWatch, and Philips, among other publications. She also is a Columbia University Age Boom Fellow and featured as a Science Communicator in Diversity in Action magazine. Because of her contributions to science, Sophie has been elected to the Sigma Xi Scientific Research Society and New York Academy of Medicine. She has a BS in Bioinformatics and an MPH in Gerontology.
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