Why Self-Advocacy is Key

Throughout the years I’ve been managing endometriosis, I have become skilled at self-advocacy. I am persistent about getting doctor appointments, researching, listening to my body, and not taking no for an answer when I know something is wrong.

The first step toward better advocacy was paying attention to the pain and fullness on the left side of my pelvis. I pushed through my fear of cancer and surgery and made an appointment with a gynecologist.

She did a vaginal ultrasound, one of the most painful procedures of my life. Her bedside manner lacked compassion, and I didn’t ask anyone to hold my hand (now I know better!), so it didn’t go well, and there were a lot of tears.

Regretting not getting a second opinion

The doctor told me I had ovarian cysts that needed immediate removal, and her urgency terrified me.

She scheduled surgery the following week, and I’d had my first ablation before I knew it.

Knowing what I know now, I would have gotten a second opinion. But that was before I researched treatments online, so I trusted my doctor's recommendations.

Because she only drained my endometriomas, they returned with a vengeance six months later. I consulted a different doctor who recommended another ablation surgery.

Ignoring what I know was best for my health

I agreed. I felt somewhat better after the second surgery but needed to advocate for myself when that surgeon wanted to put me on birth control. Historically, I haven’t reacted well to birth control, and I explained to the doctor that it causes me heart palpitations.

She asked me to try. After only two days of scary heart palpitations, I stopped taking the pill and didn’t return to that gynecologist.

I got a six-year reprieve from my worst endo symptoms. But things progressed once I moved to Vermont, and within about three years, I had an endometrioma rupture.

After an ER visit, I saw a gynecologist at the local hospital. She insisted on another vaginal ultrasound, even though I'd had one at the ER. It was another painful and traumatizing experience, even with the ability to hold my wife's hand during the procedure.

Feeling pressured but standing up for myself

During the consult after the procedure, the gynecologist gave me two options: hysterectomy or Depo-Provera. I felt pressure to decide on the spot.

But I stood up for myself and told her I couldn’t make that decision at that moment. Then I looked for another doctor.

I discovered my current doctor, one of the most compassionate, thoughtful, and attentive doctors I've had. She listened to my concerns, wasn't dismissive of the research I'd done, and recommended excision surgery.

I had that surgery in June 2020, relieved I’d listened to my gut and found a new doctor because she provided excellent care.

Unfortunately, about six months later, my pain returned with new symptoms, including ankle swelling, nerve pain, and worsened sciatica that PTs, chiropractors, an ankle doctor, and a spine doctor couldn’t understand or treat. I returned to my surgeon and asked her if I could have sciatic endo.

She knew little about it and didn’t have the surgical skill to treat it, so she recommended I try a surgeon in Boston. Once again, my persistence paid off, and I had surgery in May 2021.

I experienced another six months of relief before symptoms returned, and I’m now waiting to speak to the Boston surgeon again to see if he would recommend another surgery.

Without self-advocacy and persistence, I might have lost mobility, been unable to work, or had many other debilitating symptoms. Although I'm not without symptoms now, listening to my gut and heart and asking for what I need helps me get the care I need and deserve.