“R&B Songstress Asiahn Opens Up About Her Fibroids Diagnosis: “Why Don’t Doctors Listen To Us?”
A friend sent me this article knowing what it would mean to me. I was considering writing about the events of the past five years sometime in the future, but the sight of this tagline compelled me to share now.
Prior to 2017, I’d only heard the term fibroid once but didn’t consider exactly how it could affect its host. I say ‘host’ because fibroids are (at their core) parasites that drain you of virtually everything that makes you…well…you. As my eyes glossed over the article’s intro, something said that this was going to hit me in a vulnerable place. It wasn’t wrong.
Every line, every word, every experience, every internal thought Asiahn shared eerily resembled my own. Thankfully I was blessed to not have to live this out in the public eye, but then again, she will undoubtedly bless others by having to do so.
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“We’ll do an ultrasound just to see what’s going on.” That is what my then gynecologist said to me as I followed him down a winding hall, briskly jogging, memorizing the colored dots on the floor in case I fell behind. After about a 40 minute wait, he showed me my uterus which was riddled with what looked like tiny little bubbles. I’d never seen my uterus before and could hardly believe that these little ‘bubbles’ were what was causing the recent shift in my health. It was 2017 and I was in year two of what I assumed was just side effects of growing older. If you knew me in my prior life, you know that I was careful, yet spontaneous. I was always driving or traveling somewhere and always up for a new adventure. I loved to have fun and (even if it scared me) experience life! That all changed during the “Burnout of 2015”. After that frightening episode, I began struggling with PTSD induced anxiety and on top of that began having more painful periods and nausea throughout the year. My weight crept up and I found myself missing work. Months passed and by the following year, I was fresh out of a relationship, regressing into a hermit, bailing on plans with friends, rescheduling photoshoots and becoming a shell of my former self. I decided to see another doctor who looked more ‘like me’, thinking she could help – being an African American woman and all. I was sadly mistaken. She simply gathered the files from my previous gynecologist and suggested I start Lysteda. No new ultrasounds, no real follow-ups. I made my case for how I didn’t want to ADD more hormones into my body (that has its own set of risks, ESPECIALLY for women of color) but she kindly dismissed my concern as ‘believing the hype’. When I asked her for more testing, she suggested I go home and think about Lysteda** a little more, then schedule something else. I was BIG mad, but said nothing more. She had already been 3 hours late to the visit (apparently one of her patients went into labor), caused me to miss an entire HALF day of work, and because it was now after hours she didn’t have the patience to at least SET UP another ultrasound?! Ya’ll I was so mad I think I actually cried.
I was so frustrated with everything, I began researching fibroids on my own. Up to this point, no one other than my mom and two close friends really knew what I was dealing with.. They supported me and I decided in order to avoid surgery, I’d try to shrink my fibroids naturally by changing my diet. It wasn’t easy, but I conducted my own little “experiment” where I would alter what I consumed around the same time of the month to see if it made a difference. For about five months it actually worked! My symptoms appeared to get better. I could actually get through a work-day without throwing up all over the place. Not only did my symptoms improve, I found out (via independent research) that fibroids cause hormones to get off balance and leave sufferers vulnerable to hormonal issues such as anxiety, depression, and weight gain! I began mapping out what my life had been like for the past few years.
Up until my burnout, I’d NEVER had an issue with anxiety. I’d been stressed to the max, but never to the point of panic. It all began making sense as each individual symptom I’d been experiencing melded together, pointing to the possible truth. This truth was that my fibroids began growing in 2015 which left me more vulnerable to burnout and every bizzare symptom that had been gradually creeping into life. You know, there is a certain relief that overwhelms a person when they find out what’s wrong with their body. They’re not happy about having an illness, but knowing what it is gives them the hope of a cure. I experienced that relief and hoped that it would stay. Up until the fifth month of my diet change, the natural treatments were working; but…..as 2017 came to an end, my symptoms unexpectedly went into HYPERSPEED!
That’s when I truly understood what Asiahn meant when she said, “I found myself stuck on the floor, sweating profusely, crying in the fetal position unable to grasp why this is my life? How can I continue to live this way? How had I done it so long? And why can no one help me? Every month taking a million pain killers that could ruin my liver or kidney, suffering in agony with no recourse. Was anyone listening at all?”
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Every bit of agony I’d experienced before TRIPLED in severity and was leaving me exhausted, mentally drained, and fearful of the future. That’s when I buckled under the emotional isolation and decided to open up to more of my family members. To my dismay, just about every woman in my family had dealt with fibroids or endometriosis! I WAS FLOORED! WHY DID NO ONE TELL ME ABOUT THIS!?! WHY WAS NO ONE IN OUR FAMILY TALKING ABOUT THIS!? After the initial shock wore off, I began to realize that maybe they had their reasons. They were probably in the same boat I was currently in; embarrassed that no one would understand or self-conscious about what their body was going through. Shoot, maybe they figured all women went through it and never thought to dig any deeper!
Sympathy eventually took over the space anger had occupied and I began to converse more with friends and family, noting down their experiences and treatments.
One of these conversations with a cousin led me to my current gynecologist. He not only attended med school with her, but delivered both of her kids, advocating for her in every way possible. During my first visit towards the end of 2018, Dr. P asked me about my experience and suggested treatment options based off of how I WANTED my future to look. I poured out my soul to him and for once, felt like someone was listening. I was very aware that as a physician, time was of the essence, but had learned from my prior two gynecologists that if I didn’t speak up for myself, I’d be tossed to the side. He could have been having THE WORST day ever with a million patients waiting to be seen, but he never let me see it. THAT is how you treat patients. The Doc even went so far as to talk statistics and revealed that women of color suffer from fibroids at a MUCH higher rate than white women! McLeod Health, National Institutes of Health estimates that, “25% of African-American women will suffer from fibroids by the age of 25 and 80% will have them by age 50.” This means that each of these women will potentially face anemia, infertility, nausea, excruciating muscle/joint pain, debilitating abdominal pains, anxiety, and depression. Once I made known my desire to [one day] be married and carry children of my own, he laid out my options. He didn’t slap HYSTERECTOMY on the table AT ALL, but was very clear that having one was the only way to TRULY rid myself of fibroids once and for all. I respected him for that. However, after further discussion, we decided to take steps towards a myomectomy. I scheduled a follow up appointment for another ultrasound to see what was going on and found that my fibroids had grown in size. In the year since I’d had that first ultrasound, my fibroids had grown from tiny bubbles into 4 cm and 5 cm spheres. I wasn’t discouraged though, because I had a plan. My MRI appointment with the surgeon (one of my gyno’s colleagues) was scheduled for a date……
…..just as the pandemic was revving up.
Sigh.
I seriously considered putting off my MRI until the pandemic calmed down. At this time COVID-19 was brand spanking new and no one knew ANYTHING about it. I didn’t feel safe going into a hospital or traveling for that matter. I attempted to wait it out and had a few virtual visits until the pain kicked up into the stratosphere! There was a solid day where I camped outside my bathroom because I could throw my entire life up in an instant. I sat scrunched up so tightly that my legs went numb; but I didn’t dare move an inch because any slight movement would cause pain that would send me to the front of the line at Puke City.
THAT WAS IT!
I was dehydrated, exhausted, weak, and at that point willing to risk going out into the world if it meant a chance at ‘getting my life back.’ Over a period of weeks, I went back and forth for testing until I was able get on the list for surgery.
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September 2020. I received my negative COVID-19 test (which burnsssssss) and began quarantining for my surgery. I checked-in with my therapist and she helped me craft a spiritual game plan to push past the fear of the unknown and put my WHOLE faith in God! There were so many complications that I faced given my shunt and prior surgeries. My lifelong dream of being a biological mother was at risk. A myriad of other issues loomed but I was willing to dig my heels in and take this thing day-by-day. Fibroids had taken over my life for TOO long and they HAD TO GO! October 5, 2020. My parents supported me by driving me up to Duke Regional and helping me relax before the surgery. This was a blessing in and of itself.
The morning of the surgery was a surreal experience. My recovery was too real for words! (This entry is already turning into an e-book so I’ll save the deets for a separate post.)
Now here I am. Two months post operation and still healing. It turns out in the six months between my last consultation with Dr. P and my surgery date, my fibroids had grown to 7 cms. That’s the size of a grapefruit! If I had not had the surgery when I did, there was a good chance that I may have lost my ability to have children altogether.
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My prayer is that every woman battling fibroids right now will find peace, support, and faith in the process. Some women have fibroids and experience no change in their daily lifestyle; but for those like Asiahn and myself who have found their dreams pummeled with stones thrown from this unexpected curveball, we need help. We need encouragement and a safe space to be able to be vulnerable. We need to not fear being laid off from our jobs or losing money because our energy is literally being sucked away from us. We need our men to understand why we may have ‘a belly’ out of nowhere or experience spurts of weight gain/loss. We need the PUBLIC to be kinder when judging our appearance. We need people to stop asking us when we’re going to get pregnant. We need people to stop asking us IF we’re pregnant. We need to be told that we’re still beautiful even if we wear the scars of surgery. We need to be loved. We need community.
I was SO blessed to be connected with a Fibroid Support Group and can honestly say that having women who understand me on that level was life changing! I learned so much about fibroids and if it weren’t for some of the things shared by members of the group, I would still be struggling today! For example, an article was shared by someone in the group that spoke of Vice President Elect Kamala Harris’ plans to invest in fibroid research and treatment. This is something WE NEED! I understand there are a trillion other conditions floating around in this world, but it seems timely that this condition will finally be looked into more in depth. This is a time where our country (our WORLD really) is entering a time of rebirth; it’s very fitting that we are possibly entering a time where this condition, that takes away the ability of so many to GIVE birth, can finally be tamed.
I am not sure what the future will hold, but if you have made it to the end of this article, take time to check on the women in your family. Ask them how they are doing. Speak up when you notice them acting out of the ordinary.
If you are a woman suffering (or who has suffered) from fibroids, take time to share your story with the girls coming up in your family. Chances are they may walk the same journey so offer support NOW! Teach them to know their bodies and recognize changes. Teach them that it’s okay to ask for help or advice.
— Joc
** I later found that Lysteda is non-hormonal but was not made aware of that initially.
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