8 Minutes Later, Instagram Saved Me!

by Kash Brown

February 8, 2023 at 8:00AM CST

Surgery…again!

I am no stranger when it comes to having ups and downs with health and misdiagnosis. In 2020, I had brain surgery at the height of the pandemic, but we will save that story for another time. Today, we will talk about my recent diagnosis, how Instagram saved my life, and why women need to advocate for their health.

The disparities in women’s health are challenging, and there is an even more significant gap in the inequalities black women experience. If you’re a woman, have a mother, sister, aunt, niece, or other women you care about, take a moment to read my story. Hopefully, you’ll take away something from this to help a woman close to you. Here are a series of events leading up to my diagnosis and having an 11 lb tumor removed.

New City! New Doctor! Yikes!

February 1, 2021: My three children and I relocated from the SF Bay Area to Austin, TX. Moving to a new state was difficult, and choosing the best primary care provider took time. After months of research (i.e., talking to locals and reading reviews), I finally narrowed my options and decided.

I scheduled an appointment with my primary care provider and OBGyn doctor, who works at the same hospital, to establish a relationship and loop them in with my medical history.

Intro to the new health team

September 1, 2021: I met with my primary doctor for a check-up. He conducted a physical exam, checked my vitals, and had blood drawn.”Everything looks good so far! Check the app for the results of the labs within 24 hrs,” he said. I mentioned to my doctor that I had scheduled an appointment with my OBGYN, and he said it wasn’t necessary since my last Pap smear with my previous doctor was normal. I told him that was fine; however, I planned to keep the appointment to meet her, so I’d know who I’ll be seeing in the future.

September 15, 2021: I met with my new OBGyn doctor. She reviewed the medical records from my previous OBGyn doctor, asked some basic questions, then proceeded with a physical exam, which included a Pap smear. Upon doing the exam, she mentioned that my medical records showed I had the Mirena IUD inserted and asked if I was still using it as a form of birth control. I replied, “Yes, but mainly to minimize the flow during my period.”

She continued to examine me and asked if I was sure the IUD hadn’t fallen out. I told her, “I’m sure I would’ve noticed.” Once my OBGyn completed the exam, she said I needed an ultrasound to check for the IUD since she couldn’t feel the strings, so she sent a referral to the radiology department.

Ultrasound: They found what???

September 20, 2021: I met with a radiologist for an ultrasound to see whether the IUD was still in place. Standard ultrasounds do not recognize IUDs, so they conducted a pelvic MRI scan instead, which took almost an hour to complete.

December 6, 2021: I met with my OBGyn doctor to discuss the results of the MRI. The IUD was on the scan; however, it also revealed my enlarged uterus. They found two fibroid tumors the size of a four-month and two-month-old fetus.

When I heard the news, I began to panic and became flooded with emotions and many questions. I was glad I kept my appointment with my ob-gyn doctor against my primary doctor’s recommendation because I wouldn’t have known about this issue.

Recommendation #1: Keeping my lady parts!

I asked my OBGyn doctor what my options were to eliminate the tumors. She followed by asking if I was planning to have more children. I told her most likely not, but who knows what the future holds. She said that since I’m in my 40s and don’t plan to have more children, she recommends a hysterectomy. They would remove my uterus and ovaries, and I’d go through early menopause, but the tumors won’t return. The ovaries produce estrogen, which feeds the tumors, so in her opinion, this was the only option. It was a lot to take in, so I said, “I’ll think about it and get back to her.”

Instagram: Silently Listening

I walked out of the doctor’s office with so much uncertainty. Eight minutes into driving home, I got on Instagram to distract myself. I know that wasn’t a good idea, but guess what? A reel of a black male OBGyn doctor based in Chicago appeared on my Explore Page with the words “Fibroid Slayer” across the video. I don’t follow him, and I’ve never searched for similar content, so I assumed that Instagram heard the conversation between my doctor and me. When I played the reel, Dr. Pierre said, “If you are ever diagnosed with a fibroid tumor, and your doctor recommends a hysterectomy, ask them about a Laparoscopic Myomectomy instead.” My mouth hit the floor. I was in shock!

The Call Back: What are my options?

I immediately called my doctor, but she wasn’t available. I emailed asking if a Laparoscopic Myomectomy (LM) was an option. When she replied, “yes,” I almost lost my mind y’all. I asked her why she didn’t mention this previously. She said, “I didn’t consider it an option since you’re in your 40s and don’t plan on having more kids.” Frustrated, I said, “That’s beside the point. As my doctor, you are responsible for presenting all of my options to me.” She suggested I meet with the Reproductive Endocrinology and Infertility (REI) department specialist conducting the surgery to determine the best approach to removing the tumors.

Recommendation #2:

March 10, 2022: It’s interesting how in your most vulnerable state, everyone claims they are keeping your best interest in mind, but it doesn’t always feel that way. 

The specialist walked in, and her demeanor was very rigid. We introduced ourselves and proceeded to discuss the options to remove the tumors.

She began by saying her professional opinion is that the hysterectomy is an outdated procedure and that she highly recommends a Uterine Artery Embolization (UAE) instead. It was news to me as I was under the impression we were meeting to discuss the Laparoscopic Myomectomy (LM). When I asked about the Laparoscopic Myomectomy (LM), she said it was a high-risk procedure and didn’t recommend it.

I asked why the UAE procedure was the best option, so she explained further and strongly suggested I move forward with her recommendation. She provided her office’s direct number and asked me to contact them to schedule an appointment for surgery. I accepted and said I’d follow up with her office; however, something didn’t sit right with me.

Trust Issues: It’s not me, it’s you!

Now, I’m more confused than I was previously. I went from having only one option to now having three. I didn’t feel confident in making a decision. The clock is ticking, and the doctors are pressing for me to schedule an appointment for surgery as soon as possible. It’s different than going to the grocery store and choosing whether to buy name-brand or off-brand spaghetti sauce. My livelihood is at stake, and these doctors are practically throwing a dart with their eyes closed and hoping one lands.

Back to Instagram

At this point, I’m more confident in Instagram helping me decide than my doctor. So, guess what I did? Yep! I direct messaged the doctor whose reel I saw previously on Instagram. Now, I know what you’re thinking. How do I know if this guy is legit? Well, duh! I Googled him, of course. Lol! Plus, I checked my health insurance out-of-network directory and saw him listed as a provider. I’m so thankful for Dr. Pierre. He was very responsive and helpful in providing more context around the three options given to me. He was 100% against a hysterectomy because black women are typically targeted for this procedure and lose the ability to have children when there are other options. When I mentioned Uterine Artery Embolization (UAE), he strongly recommended I avoid this procedure. He said that even though it’s an option, any doctor in this field would not recommend it because the success rate is slim (i.e., 20% if you’re lucky).

He said he became an OBGyn doctor because he’s passionate about minimizing the discrimination black women experience regarding their health. I saw on his Instagram account that women from all over the country had flown in to have him do the Laparoscopic Myomectomy (LM) procedure, and I even considered it; however, I knew nothing about Chicago and wasn’t 100% comfortable with traveling there alone and staying for a week after to recover.

This newfound knowledge made me feel better positioned to decide, but I wasn’t entirely convinced.

Taking Charge… 3rd Opinion

September 30, 2022: I reached out to my old primary care provider in California and explained what I’d been experiencing with my new doctor and recent diagnosis. She sent a referral to her OBGyn department and asked me to send the MRI scan and report of the results. Several months had passed since the initial MRI, so she asked if things had changed. I told her the tumor had become more visible, causing my stomach to protrude.

October 3, 2022: I didn’t have the proper software to download the images off the CD and send them. Fortunately, both hospitals share the same system, so my doctor in California could access the images online.

October 12, 2022: A surgical consult was scheduled with my doctor in California on November 14, 2022.

November 14, 2022: I met with my doctor in California virtually to discuss the procedure and pre-op work. She suggested I have another MRI done at her hospital to ensure she had a clear visual of where the tumors were since she would be conducting a robotic myomectomy using the images rather than a camera. I’m still unsure why, but this is what she said then. She scheduled my MRI on December 1, 2022, and surgery on December 27, 2022, which meant I’d have to fly to California twice.

November 26, 2022: As the date approached, I still needed to receive an email confirming the surgery date. I contacted the doctor’s office in California and learned there had been a mix-up. The scheduler booked my appointment for a different patient, so they had to find another time for me to have surgery.

Fortunately, another date opened on December 13, 2022, but it didn’t make sense to fly in for the MRI on December 1 to fly back two weeks later. I asked the surgeon if I could have the MRI and pre-op work done during my trip for the surgery to avoid flying back and forth. She notified her office, and they were able to accommodate my request.

I canceled my previous flights and re-booked the new dates. The surgeon recommended that I not fly for at least a week after the surgery to avoid blood clots from sitting for long periods.

Back to California

December 9, 2022: It was a jam-packed weekend. I touched down at the San Francisco airport, picked up my rental car, drove to my son’s house, and dropped off my things. I knew I’d still be recovering from surgery through New Year’s Eve, so I decided to make the best of my weekend before surgery and step out for a girls’ night. I’ll spare you the details, but your girl had an amazing time.

December 11, 2022: Fast forwarding to Sunday, this is where having a girls’ night out goes wrong. I hung out late with my home girl and overslept the next morning. I had a Covid test scheduled at 9 am and MRI at 10:30 am. I woke up at 9:55 am, brushed my teeth, threw on a pair of sweats, a t-shirt, and some slippers, and rushed out the door. I contemplated whether I should still get the Covid test first or get the MRI and try the Covid test after. I made a conscious decision and went to the MRI appointment, which was a crucial part of my surgery. I arrived right on time. The radiologist introduced himself and asked that I remove all objects and put a robe on. As we entered the room for the MRI, I shared that I had brain surgery previously and should be ready for the scan. He decided to delay the process while he confirmed my medical records before proceeding to ensure there weren’t any metal objects that would impact the pelvic scan. Better to be safe than sorry! After approximately 20 minutes, he got the approval to do the MRI scan.

MRI Scan

The radiologist gave me earbuds to minimize the sound of the MRI machine. Although I’d had 2 MRIs in the past, you never get used to the loud buzzing, scanning, and beeping sounds it makes. He had me lay down on the narrow MRI bed, put a warm blanket on me, gave me a button to press in case of emergency, and pushed the bed inside the MRI machine feet first.

I could hear the radiologist talking to me through the speakers of the MRI machine. Every time he did a different scan, he let me know. Halfway through, I began to get warm. I assumed it was because of the blanket, but I didn’t want to take it off and possibly impact the scan by moving. By the end of the scan, my body was so hot, and I could feel the sweat on my face. When the radiology technician pulled me out of the MRI machine, I told him I was hot, and he said I should’ve pressed the button. Being in the MRI machine is similar to a microwave and can cause the body to overheat. I was inside for approximately an hour. It was the first time I had experienced this, so I wasn’t aware of what was happening. When he took the blanket off me, my gown was damp from sweating. I got up, walked to the dressing room, and changed my clothes, so I could hurry and try to take the Covid test.

Covid Test

I drove to take the Covid test in the hospital’s parking lot at a different location. Upon my arrival, I realized there weren’t any other cars there. The attendees prompted me to pull into the drive-thru, show proof of identification, and move forward to take the test. I was so happy because, without it, I wouldn’t be able to have surgery.

As I approached the next stop in the drive-thru, I rolled down my window; they swabbed both nostrils and said they would send the results to my doctor and me within 24hrs. It was a near miss, but everything worked out.

Pre-op Meet & Greet

December 12, 2022: Today started as a good day. I arrived at the hospital early, but as I drove around looking for parking, I quickly realized I had a problem. Parking was almost impossible. I circled the lot for 20 minutes without any luck. The receptionist asked when I’d be arriving, so I explained my circumstances.

She gave me 15 additional minutes to make the appointment and said my doctor would reduce the time to ask questions since I was late. I arrived with 1 minute to spare, and my doctor made herself available to address all my questions and concerns. Although I was late, she understood the importance of being transparent about the process and ensuring I was at ease.

She shared that the tumors were much more extensive than she thought and was unsure whether she wanted to proceed with the surgery. The new MRI scan showed the tumors were now the size of twin 6-month-old fetuses. She suggested I return home and take medication for three months to shrink the tumor before surgery.

I asked if she was sure, so she reviewed the images again and confirmed the surgery could be done but may require a vertical incision down the middle of my stomach to remove the tumors due to their large size and placement. She wasn’t 100% certain this would be necessary but wanted to ensure I was aware of the risk and worst-case scenario.

By the end of my appointment, I felt confident I’d made the right decision and was happy she would be removing the tumors.

Time for Surgery!

I am not a morning person. My surgery was scheduled for 5:30am, the first of the day, so I decided to pull an all-nighter to avoid oversleeping. This is not recommended as doctors suggest getting rest before surgery to prevent nervousness and potential inflammation.

I stayed at my son’s house, so he could drive me to my appointment. Although I was scheduled for 5:30am, the front desk receptionist that checks in patients didn’t arrive until 7am. There were several people in the waiting room for surgery as well, so it took approximately an hour to get registered before they took us to the pre-op area. Once everyone was checked in, they dismissed the person that drove us there and told them they would receive a text when it was time to pick us up.

They took the group of patients upstairs to a large room where there were 8 beds, each separated by an individual curtain. I used the restroom, then the nurse gave me a hospital gown, yellow socks, and a bonnet for my hair. There was a balloon type of blanket on the bed that looked to be made of soft aluminum foil and it was attached to a machine that blew warm air inside. After I changed my clothes, I layed on the bed, pulled the blanket over me and was immediately relaxed.

There were a few nurses that came to make sure I was comfortable, the anesthesiologist stopped by to ask some questions pertaining to my medical history and whether I had allergies to medication. I explained that my body has a low tolerance for medication, since I don’t typically take any and that in the past I had a severe reaction to anesthesia medicine and went under too deep. I had also experienced a lot of nausea.

This information helped the anesthesiologist take some initial steps to minimize the effects of the anesthesia. A nurse gave me a pill and placed a small patch behind my left ear for nausea. Another nurse came by to put the IV in my hand. I watched as she inserted it in my hand and placed tape over it, but something didn’t seem right. A different nurse stopped by to make sure I was all set and mentioned that the IV drip was too slow. The nurse that put the IV in my hand said she thought it was ok. I asked both of them if they were certain it wasn’t a problem and they reassured me it was fine. My doctor stopped by to answer any remaining questions I had and confirmed we were ready to go for surgery.

The nurse rolled my bed to the operating room and there were roughly 8-10 people in the room. I recall there being a recorder and everyone in the room introducing themselves and stating their role. The anesthesiologist took the lead as she needed to put the medicine in the IV to put me to sleep. I heard her say, “The IV drip is too slow.”

The nurse that applied the IV said she thought it was fine, but the anesthesiologist interjected and said if the IV wasn’t correct, the anesthesia medicine would not flow properly and could cause me to wake up during the procedure. The anesthesiologist put the surgery on hold while another IV was inserted, then gave the approval once she verified it was correct. There’s moments like this when you don’t know if and or how to advocate for yourself, but having someone like her in the room does provide comfort and makes a difference.

The anesthesiologist proceeded with injecting the anesthesia into the IV and the last thing I remember saying was, “10, 9, 8, 7…” Next thing you know, I was being awakened by a nurse. My doctor stopped by and shared that the procedure was a success.

Post-op

Great news! My doctor removed the tumors, which weighed 11 pounds, and didn’t have to cut an incision vertically down my stomach. She cut five incisions across my stomach in the form of a rainbow; two horizontal incisions on the left and right sides, all one inch long, and one vertically above my belly button, approximately 2 inches long. I’d asked my doctor initially if she could just cut an incision in the lower abdomen like a c-section to hide the scar; however, this wasn’t an option due to the size and location of the tumors.

My son picked me up from the hospital around 2 pm and took me back to his house. As the medication wore off, my stomach began to feel like I’d just done 5,000 situps. It was the most uncomfortable and painful feeling I’d ever experienced. Although my son had picked up my medication from the hospital pharmacy, it wasn’t until the pain kicked in that we realized the pain medicine was not in the bag. It made for a long night, and my doctor reissued the medication at a nearby pharmacy so my son didn’t have to drive an hour back to the hospital.

Although my doctor requested that I stay a week after surgery before flying back home, I decided to stay four days to recover so I could get back to my youngest son. The flight back home was okay. Per my doctors’ instructions, I walked down the aisle every hour to keep my blood circulating. I had a middle seat and gave the guy sitting in the aisle seat next to me a heads-up, and he understood.

Now, what???

This blog started as an idea to write something quick to tell my story about my experience with the hope of helping someone else. Now, I’d like to express how important it is to advocate for yourself. From the beginning to the end of this blog, you read how there were several scenarios where either myself or someone else had to speak up on my behalf to ensure I received the proper care and best outcome from this procedure.

Generally, we’re afraid to question or challenge doctors. Yes, they are professionals and may have the necessary credentials, but it’s your life. They are human, just like you, and can make mistakes. The information they provide is not necessarily incorrect, but if something feels the slightest bit off, get a second or third opinion if you have to. It’s okay to tell your doctor you need time to digest the information they are providing. You don’t have to get a referral from them to seek another opinion, but keep a copy of your records in case the other doctors need to see them. All you have to do is download your medical records in the hospital app or go directly to the medical records department, show proof of identification, and they’ll print your documents for you.