Endometriosis Story

Trust yourself. You know your body best.

One month ago, I was texting my friend about a doctor's appointment I had that day. I said, "I really don't feel like going; maybe I will just cancel." Making the appointment alone was difficult because I've been so frustrated and honestly fed up with all these doctors. I didn't have the energy to be dismissed by yet another person when I expressed my suspicion of having endometriosis.

Backstory: I've been dealing with hormone imbalances since high school. After years of unexplained symptoms, such as getting my period twice a month, experiencing severe menstrual pain, rapid weight gain, mood swings, chronic fatigue etc. I was finally diagnosed with PCOS (Polycystic Ovary Syndrome) at 21. After some terrible experiences with various gynecologists and endocrinologists, and spending six months with an IUD that worsened my symptoms, I promised myself I’d manage my condition holistically and address the root cause. Through extensive research and working with countless holistic doctors and acupuncturists, I managed to restore my menstrual cycle to a normal length, gain control over my PMS, and improve my energy levels. I go into more detail about it all in my hormone balancing post you can read here

For a while, I felt a sense of relief. However, as time went on and my routine remained unchanged, I began to notice recurring symptoms that I had previously ignored or attributed to my lifestyle as a professional athlete. Determined to find answers, I sought help from various doctors and specialists again and SPOILER ALERT they all made me feel crazy, misdiagnosed me, insisted it was just residual PCOS symptoms, and shamed me for not just taking prescription drugs like birth control to fix my issues.

Fast forward to a few months ago, while speaking with a close family friend named Emma, she mentioned that she was undergoing endometriosis surgery again. She has a similar story of being dismissed by doctors for years, only to later discover, during surgery, that she had stage 4 endometriosis. I won’t go into her details now—I'd love for her to share her full story in a different post—but in short, against all odds, she managed to get pregnant after undergoing the surgery and had a beautiful little girl. This follow-up surgery was intended to fix a few more issues and remove any returning endometriosis, which often grows back with stage 4 cases.

Hearing Emma’s news gave me confidence to trust my gut and not give up. Despite having been told by a doctor just a few months ago that they were confident I didn’t have endometriosis, I suspected they were wrong. So with Emma's encouragement, I called to schedule an appointment with her doctor.

I went to the appointment to see the endometriosis surgeon. Once I arrived, the nurse asked me why I was there; what I wanted to say to her, woman to woman, was that I’ve been dealing with debilitating pain and health issues for the past 10 years. I've tried all the diets and treatments, undergone dozens of tests, and seen more doctors than I can count on two hands. They all tell me I'm healthy and that I just have PCOS, but I know my body. I can feel that something is off, and based on my research and stories from friends, I'm here because I’m pretty sure I have endometriosis. But instead I responded defensively, "I want a second opinion on my endometriosis diagnosis." She asked if another doctor had diagnosed me, and I lied, saying yes because I didn't think I would be taken seriously otherwise.

She took my vitals and said the doctor would be in shortly. I was relieved she didn't ask me to strip down and wear that silly paper gown I've had to wear at every other gynecologist's office. So, I waited there, nervous for this doctor to come in. When he entered, he asked me the same question: "Why are you here?" This time, I found the strength to tell him, “Listen, I've been dealing with a lot of pain and health problems for years. I know I'm not a doctor, but I know my body well, and I'm fairly certain I have endometriosis. I've seen countless doctors, and they've all dismissed me. So when my friend told me you performed surgery on her, I thought I’d give it one last shot and come see you.” 

To my surprise, he immediately validated all my feelings and concerns, saying that almost every woman he diagnoses with endometriosis has been dismissed by doctors for years. He told me he would ask a series of questions, and I should answer them to the best of my ability. We reviewed all the symptoms and questions, which I can share in more detail in a different post if that would be helpful. At the end of our discussion, the doctor mentioned that based solely on my symptoms, he was almost sure I had endometriosis but suggested we still do an ultrasound to see if we find anything. He explained that it doesn’t always appear in ultrasounds, but sometimes it can.

 

During the ultrasound, he confirmed my diagnosis of PCOS in my right ovary and then as suspected, found signs of advanced endometriosis. I remember lying there, already feeling a sense of relief while simultaneously feeling so sad, and mad wondering how this was possible. I had undergone ten ultrasounds before, and nothing had ever been discovered. 

We finished up and went over everything we had discussed. He reminded me that he technically can’t confirm 100% that I have endometriosis until we perform the surgery. During this procedure, the surgeon makes two small incisions in the lower abdomen and one in the belly button. They then use a camera to go in and remove any lesions they find. Different methods are used to remove the endometriosis, including burning or cutting (excision). Based on my research, excision seemed like the most effective option, so I was relieved to hear that this is his method. I absorbed all the information, left the appointment, and got into my car.

The moment I closed that car door, I burst into tears—tears of relief. I never thought I would cry with happiness over needing an invasive surgery, but I was so grateful to finally have proof that I wasn’t crazy and that it wasn’t all in my head. After all these years of being dismissed and gaslit by doctors, I was finally being taken seriously. 

The next thing I knew, I was being wheeled into the operating room, and by a happy coincidence, I saw my friend Emma on my way in because we had both been scheduled for surgery on the same day. (the one who recommended I come to see this doctor.) The surgery went well; he removed all the endometriosis, all my reproductive organs were intact BH, and I went home to start my recovery.

So here we are. It’s been almost a month since the surgery, and although I’m still not 100% healed, I already feel so much better. A huge weight has been lifted off my chest. I am so excited to finally live pain-free and no longer be so worried and frustrated about my health

So girls, this is your sign and reminder to keep fighting for your health and advocating for yourself. As I’ve mentioned, I’ve seen countless doctors and specialists who have all dismissed me, misdiagnosed me, or made me feel like I was crazy. They insisted that my lab results and ultrasounds were normal and that it was unlikely I even had endometriosis. According to them, all my symptoms were just “normal girl things” that come with having a period. What’s even more upsetting is that the average time to receive a diagnosis for endometriosis is 7 to 10 years! That is insane.

It makes me so angry, and sad and frustrated that my story isn’t unusual, it’s a story 1 in 10 women experience. And It’s why I’m sharing this post and why I've shared my experiences with my health and what I’ve learned about women’s hormone health over the past 10 years. I’m hoping it helps at least one of you. 

Trust yourself; you know your body best.

Please don’t hesitate to reach out if you need support. I’m always happy to help. You can message me here or on Instagram ❤️❤️ 

xx Maya