Life seemed to shift after I turned 30, like in that old, “your body serves you papers after you turn 30,” sort of shift. In 2015, 27 days after turning 30, I discovered that I had uterine fibroids. The diagnoses came after Chris and I returned from spending Thanksgiving in Oman and was delivered by a tired physician who seemed resigned to the fact that I had no other choice but to live with this condition. I was grateful in that moment. At least I could put a name on what I had been dealing with and why I faced excruciating pain month after month and what I thought was the obvious reason why I couldn’t have children. But then they got worse, and month after month the pain became unbearable resulting in the occasional sick day because working while struggling with “uterine migraines” is impossible. There were days when I thought I would pass out from the pain and blood loss. Then there was the miscarriage and the dark night of mourning that confirmed that I could get pregnant but that I wasn’t fit to be a parent in that season.

Through it all, the part that upset me the most was feeling as if the medical providers dismissed my concerns. I get it, physicians are swamped, understaffed and some places, like the clinic where we once received our, care didn’t even have a proper OB/GYN facility so all reproductive health concerns were managed out in town at the country hospitals. But two of the three providers that I worked with didn’t seem to listen and it sucked. I kept telling them that I was in so much pain, and while I wanted to have kids, I wanted them to get to the root of the problem and tell me why it felt like my body was attacking itself. More than children, I wanted to be free of the pain. But I kept getting the sense that my records and providers were focused on babies and not fibroids. My last primary care manager (PCM - military for main medical provider) before moving to Spain was an angel. He listened intently, asked me what I wanted to do and supported my decisions, even offering to answer any questions about a planned surgery while on vacation! It’s sad to say he seemed out of place, because he was SO good at what he did. But I wasn’t complaining because at least I got to experience a calm after the storm.

Shortly after arriving to Spain, I scheduled an appointment with my new PCM because I wanted to continue my efforts to address my fibroids. I still had heavy and painful periods and I still wanted to get rid of them. My first PCM in Spain was also an angel. Not only did he listen to me, he recommended I testing my thyroid, which explained A LOT and led me down a path of clarity and greater health. He listened, he cared and once again, based on my experience with a good number of PCMs, he seemed like he was out of place because he was SO good at what he did.

For three years, I have been battling heavy and painful periods. I have had bleed-outs where I’ve destroyed clothes, tried all types of natural remedies to help with the pain and prayed and cried and sought answers. Yes, I’ve talked with providers and yes I’ve gotten ultrasounds to see what was up with my body. I even got an ultrasound when I arrived in Spain where I found out I had four, not two fibroids as I originally thought. I went to three different hospitals in Bahrain and each only detected two fibroids. Three months after my last ultrasound, I schedule another appointment in Spain where they found two more. I was shocked and confused. The entire time I kept getting the same song from a number of providers, “uterine fibroids don’t necessarily cause miscarriages.” Ok but what about the pain and bleeding? Again, while having a baby is a dream and would be a bonafide blessing, getting these tumors out of my body has been priority number one. I got tired of the run around and feeling as if my concerns were inconveniences. I had to fight all the conspiracy theories and fears of provider bias that flooded my mind. They made me wonder if I indeed experienced racial and gender bias. Some horror stories outline the sexism women face when going to the hospital; we’re perceived as melodramatic and exaggerating our pain. If you’re a black woman, there’s the added assumption that you have a high tolerance for pain or that you just don’t need care at all, and don’t be pregnant.

I'm not opposed to going to the doctor for regular check ups, but I usually don't go to the doctor unless I absolutely have to and the pain is too intense to function or focus on anything else. Now, I have gotten prescriptions. One doctor decided that I might do well taking an opiod for pain relief and I refused. I tried one pill and not only did it NOT get rid of the pain, it made me feel crazy and off. At the time, I managed a $40MIL federal budget and had to be sharp at all times. What do I look like going to work high and putting commas and decimals in the wrong place? Plus, the medication didn’t solve the problem. I was in terrible pain three days per month for 3 years. I would try to explain it to my husband in a way that he might relate. So, while I don’t have the same body parts, I know that if someone were to punch or kick him in the groin three days per month for three years, well, that would not have even lasted because that level of pain would have resulted in immediate medical attention. But for me, and other women, it’s this uphill battle.

Few doctors trust their patients to be experts of their bodies and experiences. I and several other women I know typically go to our doctor appointments armed with prior research on our perceived ailment. We’re prepared to deliver our recommendations and specific lab requests so that we don't walk away from our appointments feeling like we were given the runaround without nary a solution. For one doctor appointment, I even brought a book I had read cover to cover to show my provider only to have just looked at it like I was handing over a wad of chewed up gum. But everyone doesn’t feel empowered to speak up and challenge the powers that be and some of us are tired of only getting attention when we cry out in frustration. The times when I felt like the doctor really listened usually came after I shed real, genuine tears. I don’t want to have to cry. Nothing wrong with crying, but why do I have to cry for you to listen to me and take me serious and treat my problem?

This is a lament and I know it’s all over the place. But in an effort to share a sliver of what I've learned in this season, I leave you with three points for your healthcare journey.

Document everything. Every time you feel sick or off, write it down. Write where you were, the time of day, what you were doing, eating and anything else that might trigger an incident. Put it in your phone, write it in your calendar, send yourself a running email and update it every day you feel off, bad or after every doctors appointment. Take notes at your doctors appointments and ask if you can record your appointments too, especially if you can’t bring a friend or loved one to the appointment and you want to remember the exchange.

Do your homework. You might not have every ailment in the book, but if you suspect something, look it up and come to your appointments with a few suggestions on what it might be. While this can be tough and there are things that only labs can detect, your efforts to figure out what might be going on could narrow down the diagnosis. I once had a medical student advise me on this and it was awesome. I was dealing with the side effects of H.Pylori, had already suffered an ulcer, though I didn’t know it, and my stomach was on strike. But because I did my homework and Googled my symptoms, I went to my appointment asking the doctor to put in labs to test for H. Pylori and sure enough, I had H. Pylori. The endoscopy showed a healing ulcer and I walked out of the appointment with a prescription for medication to treat my condition.

Be persistent. I know it’s stressful to have to repeat yourself and go through the motions. I know you feel like no one is taking you serious or listening. Self advocacy is key, but you have to keep pushing. If you can recruit a more outspoken or no nonsense friend, family, etc. to accompany you then do it. I know a number of folks who avoided major medical mistakes all because another person was willing to speak truth to power on their behalf. Sometimes you hit a roadblock and feel like you’ve said all you can say, and then comes that amazing person who presents the doctor with a question that forces them to think twice and that also lets them know that someone is on to their shenanigans. If you can’t be persistent because you're all talked out, find a trustworthy companion who can help you carry your burdens through the finish line.

I get that doctors are busy and have a lot on their plate and the system overall is pretty weak, but so many people are at risk of dropping out of care because they don’t believe that anyone cares. This isn’t the end. I hope to bring good news about the miraculous disappearance of my fibroids or the non-invasive surgery option that could result in less pain and a quicker recovery. Maybe there will be more breakthroughs on the root causes and gold standards for prevention treatment of uterine fibroids. Until then, I’ll keep hope alive, pray for healing and remain persistent in my efforts to alleviate the pain.

What are your experiences navigating healthcare? What advice do you have for overcoming any roadblocks while seeking medical care?

Pain-t a picture