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Endometriosis: My journey and how I learned to advocate for myself

Did you know that it’s okay to ask questions, seek different treatments, research for yourself, and say yes or no in any doctor’s office?

To be completely honest, I did not know I had the freedom to speak up while in the presence of a doctor. I had always trusted my providers for my medical needs in the past and didn’t feel the need to explore different options for anything, even as simple as treating an ear infection. But this time around, I was facing a new challenge, a new diagnosis that shattered my world. In January of 2020, I was hit with the news that I have stage 4 endometriosis. “It’s everywhere, and it’s bad” my surgeon (at the time) described to my mom while I recovered in the post-op room after my first laparoscopic surgery.

You see, I’m a “go-getter” type person. When I want something, I do everything in my power to get it. In this case, I wanted answers, I wanted a treatment plan, and I did NOT want this to affect the future of my fertility. Sure, some could say I had some pretty unrealistic expectations, but I believe my mindset helped shape the path of the discoveries I made along the way…

You may relate to the overwhelming, initial questions that run through your mind after receiving a new diagnosis—such as, how did I get this? Did I cause this? In what ways will this affect my health? How will this affect my relationships? How do I get rid of this? For the first time in my life, I felt so out of control and worried for my future. But I was determined.

However, unbeknownst to me, the medical team I had at the time would have actually stood in the way of what I wanted to accomplish for myself when navigating endometriosis. Soon after the surgery, the doctor had told me all within a 5-minute appointment what my next steps were. “We will start you on Zoladex, have you on that for 6 months, and then I will go in and remove all the endometriosis through the same surgery method I used the first time.” It’s as simple as that? I thought. I then asked, “What’s Zoladex?”

Remember, I had everything in me to resolve these specific things: I wanted answers, I wanted a treatment plan, and I did NOT want this to affect the future of my fertility. The doctor then proceeded to answer what Zoladex was, describing it as a menopausal drug that will be administered by my bellybutton in shot form, once a month. “But don’t worry, barely anyone complains of any side effects.” He told me. “I’ll have my staff get your insurance approval and we will get you started on this ASAP,” he concluded. And out the exam room he was.

Right away, this doctor barely even satisfied my first need of wanting answers. This was a huge red flag to me. With how short the appointment was after having such a difficult diagnosis for me to process, with how loose his answers were, I wasn’t satisfied with the treatment he wanted me on as well. I decided to do some research on my own about the drug he was to prescribe me and if other women have experience navigating endometriosis with this specific treatment plan. Researching yourself can be overwhelming and difficult, but what I discovered would soon pave the way for the path I was meant to be on.

I found, what I call, was my life-saving source: Nancy’s Nook Endometriosis Education on Facebook. A group with over 150,000 members worldwide that provides evidence-based information regarding the disease, treatments offered, surgeries, and more. I learned that the majority of doctors who treat endometriosis use the ablation- suppression method, which was the protocol my first doctor said I’d be on. Automatically, I recognized that his plan could affect the future of my fertility. I learned that there are better ways to treat endometriosis-- that only a handful of doctors around the world use, which was a unique skill of performing excision surgery to treat the disease. I soon discovered that this type of specific surgery is the gold-standard treatment for endometriosis, why it was the best, and how it would be my best bet at sustaining my fertility. This hit all the specific things I wanted answers for that I set out with at the beginning. I was ready to take the next step I felt was best for me and get the medical treatment needed for endometriosis.

Nancy’s Nook Endometriosis Education on Facebook provides a list of surgeons around the world who are trained in excision surgery, so I used this to find the surgeon I needed. I was then led to Dr. Kongoasa from RHM Gynecology located in Atlanta, GA. I was able to schedule surgery a few months out and got the gold standard treatment for endometriosis that I was determined from the beginning to get.

It’s been almost 2 years since this whole experience and I was taught some of the most valuable lessons I have learned in life so far: advocate for yourself, trust your feelings, and don’t be afraid to ask questions. It was almost as if I had broken free from something I never knew was restricting me to begin with, and those lessons soon applied to almost everything in my life. We don’t have to believe the first thing we’re told on an everyday basis, and it’s okay to think critically in times of desperation.

Although very hard for me to process at first, having endometriosis was a blessing in disguise. It gave me a journey that healed me, allowed me to grow as a person, and led me to amazing people such as Dr. Kongoasa and his staff.

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