When Doctors Say No - How to Get to Yes!

September 24, 2018

 

The news has been flooded with stories about Serena William’s struggle with the medical community as an African-American woman. In the past few years, the medical community is coming to grips with an undercurrent of bias that minimizes the pain of women of color.

 

The truth is that more African-Americans die from heart disease, diabetes, cancer, and other illnesses. Why is that? You could argue that a higher percentage (around 20%) of African-Americans live below the poverty line. Serena Williams is not in this number. Why would she have to fight for someone to listen to her complaints? By all standards, she should have access to the “platinum” status healthcare.

 

A recent article in Tonicrecounts a story from a physician in the ER. He shared that a young African-American girl, in a depressed neighborhood, was a victim of a brutal hostage situation that ended with her sustaining life-threatening gunshot wounds. The doctors and nurses worked hard to save her life. Once she came out of coma, she refused further care. They labeled her ungrateful. 

 

In another case, a young, privileged, white woman was in a horrific car crash that left her horribly disfigured. When this young woman came back to consciousness, the hospital staff had a line of psychologist and experts in her room to help her with the trauma of disfigurement.

 

The little black girl, who was dismissed as ungrateful, actually had PTSD from her ordeal. This trauma was the source of her refusal for help. She was in shock. Yet, she was not offered the same services. Yes – there is bias. 

 

My first question about the little black girl was “where were her parents? Who was advocating for her?” Sadly, I think the answer would be “no one”. Unfortunately, they may not have known how.

 

Who is responsible for the gap in her care? Her parents? The doctors? Our country? Or is there something else?

 

I have my own history with the medical system. I have dealt with dismissive doctors (Black, White, Asian, etc.), uninformed adults in my life, and over prescription of pharmaceuticals. It is my belief that African-American women must learn how to advocate for themselves. They also have to teach their children to advocate for themselves. Doctors are “practicing” medicine. We have a responsibility to ourselves to help them help us.

 

Here is my medical story and how advocacy for myself saved my life.

 

What is this Crazy Pain?

 

All my menstruating life, I have been racked with debilitating cramps. Not the kind of cramps that you get Day One, take a Motrin, and move on. These cramps felt like a cat was scratching the inside of my uterus. I would be doubled over in pain, trapped in the bathroom, caught between vomiting and the “other” thing. My monthly menses was like getting food poisoning for two and half days – every – single – month.

 

My trips to the doctor to find relief were constant. In the beginning, when I was a teenager, the doctors would dismiss my pain. They would prescribe ibuprofen and send me on my way. However, I knew that something was wrong. I just didn’t have the information to advocate for myself. It was like my pain was diminished by these doctors. I knew something was wrong but did not know how to ask for help.

 

As I grew older, I tried different things. Long baths, birth control, massive doses of ibuprofen. You named it, I did it. Nothing seemed to work. I never let my pain hold me back. The only time in my life where I remember my pain being managed was during my college years. This is when I discovered that 800 – 1000 mg of ibuprofen and birth control would make my symptoms to bearable. Unbeknownst to me, I was resolving my pain by killing my liver.

 

For a while, ibuprofen seemed to make a huge difference in my pain management. However, I kept wondering why my pain was so intense. There must be something else. Yet, every gynecologist I had ever visited gave conflicting diagnosis.

 

What Do You Mean “It’s in My Head?”

 

When I would meet with a new doctor to figure out what was happening inside me, I would run through my litany of symptoms. Some of the doctors looked on with a bored look, waiting to get to their next patients. Others listened intently. Some of the doctors ordered batteries of tests, others just talked to me in the room. I saw no less than 20 different gynecologists.

 

All of my appointments ended the same way. 

 

Here is a prescription for 800mg ibuprofen. 

 

The final straw for me was a visit to an African-American female doctor who I thought would listen to me. She ordered a number of tests, promised to investigate the cause of my issues, and help me figure out the next steps. I had a number of my friends who had hysterectomies for symptoms less debilitating than mine. My hope was that we could consider this route. That was when this doctor turned on me.

 

She flat out refused to consider a surgical option. She held up my ultrasound pictures as evidence that my uterus was in pristine condition. Sure, my ovaries had huge cysts on them, but they ran a CA-125 marker test for ovarian cancer and that was negative. In her opinion, me and my beautiful uterus (her actual words) needed to try a low dosage of birth control pills. This would resolve my ovarian cysts and all would be better.

I was angry. This appointment resulted in more of the same. I needed to find help and fast. This would be the final straw for me. I resolved to find help wherever I could.

 

Finally – Help!

 

In the fall of 2016, my savior arrived in the form of a gentle obstetrician with a Scandinavian last name. I approached this doctor’s appointment with fire in my veins. As the appointment started, I told her that I could no longer continue in this state. My life was becoming adversely affected by whatever was happening in my reproductive system. I explained that I did not want to bear children nor did I want to keep my uterus. I wanted a hysterectomy and nothing short of that would suffice.

 

To my surprise, she put a deal on the table. She agreed that there was something wrong. Her guess was that I had a severe case of endometriosis and may need surgery. She acknowledged that my ovaries were consistently cystic but refused to consider their removal. A compromise – she asked me to commit to a year of Lupron injections. This would put me into early menopause and relieve me of my symptoms. She wanted me to try this solution. If it did not cure me of my condition – she would perform a hysterectomy.

 

I agreed.

 

My first shot resulted in bliss. That is until my hair turned dry and brittle. My skin dulled. Hot flashes consumed my days and nights. I gained weight. I lost interest in my husband’s attentions. Menopause wasn’t fun at all. However, I did not have the horrible pains every month. 

 

Lupron was not a long-term plan. The side effects were too risky after a year. Soon after I stopped, the pain returned with a vengeance. Together, my doctor and I decided that we would move forward with the hysterectomy.  This was after she tried to get me to try an IUD which I vehemently refused. 

 

The Shock of a Lifetime – Dodging the Proverbial Bullet

 

My husband and father accompanied me to the hospital. I changed into my gown and prepared for my new pain-free life. When the doctor entered my room, she looked worried. She was concerned that the scar tissue in my pelvic area had sealed my ovaries into my uterus. She wanted my permission to remove my ovaries. I broke into tears. I told her that my research showed that ovary removal shortened life spans. Women without their ovaries were subject to heart problems, higher incidences of stroke, and more susceptible to cancer. We had quite an animated conversation about the research that I had done about the effects of a partial vs. full hysterectomy. She was impressed by my grasp of the procedure. She also affirmed by research that removing my ovaries could shorten my life.

 

I asked her to try to save one. She agreed. 

 

My surgery went off without a hitch. When I woke up from anesthesia, I heard my surgeon tell my husband that she had never seen endometriosis as bad as mine outside of a textbook. She said that I had scarring throughout my pelvis, on my colon, and even on my liver. She said it looked like my ovaries sprayed endometrial matter throughout my body every month. 

 

When I was fully conscious, my doctor let me know that she was able to save my ovaries. She was able to call in a specialist to help detach them from my uterus. She said that my uterus was literally melted into my pelvic region. She was relieved that we had removed it. 

 

I went home two hours later to begin recovering.

 

One week my later, my doctor called me to let me know the results of the testing on specimens taken during my surgery. She confirmed the diagnosis of endometriosis. She let me know that because we kept my ovaries, we would need to keep a close eye on it go forward. She also confirmed a never before diagnosis of fibroids. And then she laid a whammy on me.

 

“Stephanie, we found something else,” she said

 

“What else could there have been? You found it all,” I replied with a laugh. After all, a previous doctor told me that my uterus was beautiful and perfect.

 

She wasn’t laughing.

 

“We found two spots of pre-cancer on your uterus.”

 

My mind spun like a tornado. I could not process what she said. I asked and she repeated her statement. I asked her what that meant.

 

“Stephanie…um…I don’t know how to say this. But if we would have waited another year, we would have been having another discussion about treatment options for uterine cancer.”

 

I broke down. My aggressive advocacy for myself, a hysterectomy, had actually saved my life!

 

“Thank you Doctor,” I sobbed. “I have two small children. Two little girls. Thank you for listening to me. For 30 years, no one would listen to me. You saved my life!”

 

Then she said four amazing words to me. 

 

She said, “you saved your life.”

 

We both knew that she didn’t want to do this surgery but I stood strong in my conviction that I wanted this done. She was just the right doctor at the right time. 

 

I saved my life. 

 

This close call stunned my family. My husband and father both broke down when I told them. We all knew what was at stake.

 

Advocate for Yourself

 

Over the last eight years, between advocating for my mother during her cancer battle or my own health issues, I have learned the power of advocating for myself. I have always pushed my children to advocate for themselves at the doctor’s office. I allow them to run their appointments and speak directly to their doctor about their bodies. I realize that it took me over 40 years to do the same for myself.

 

Here are 4 easy steps to advocate for yourself:

 

  1. Do the research yourself. If you think something is wrong, go into your doctor’s office armed with knowledge. Ask them as many questions about their thoughts or diagnosis. Continue to ask questions until you are satisfied with the answer. The best questions is “why?”

 

  1. If you get a diagnosis, do the research and find out what treatment options are available. Doctors do not know about all the options out there to treat your condition. Inform yourself. Understanding that removing my ovaries would shorten my life allowed for a discussion with my doctor. Without that research, I would have said yes blindly. By doing the research, I was informed and could make the decision for myself.

 

  1. If you don’t like their answer – CHANGE DOCTORS! Find a doctor that will listen to you. You don’t have to take what they give you. Go outside your network. Get a second opinion. Every time I have gone out of my HMO network to get help, my HMO suddenly provides the care that I requested.

 

  1. Question pharmaceutical solutions that are given too quickly. You have your smartphone at your appointment. Pull up the medicine and research it right there with your doctor. Ask about the side effects. Be informed about what you are putting in your body.

 

My near miss with a devastating diagnosis has taught me one thing. It’s not about race, class, or education level. We all need to find our voice to help our doctor’s help us protect our health. 

 

It could save your life.

 

Stephanie Walton is a business leader, coach, and author of Succeeding with Passion: Simple Strategies to Drive Your Life, Relationships, and Career Forward. 

 

Find out more about Stephanie at succeedingwithpassion.com

 

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