Endometriosis+ | Part One
A diagnosis and surgery after 15 years of searching
One week ago, I had a laparoscopy where my doctors found and treated endometriosis, interstitial cystitis and a cyst on one ovary. As I continue to recovery from surgery and heal mentally and physically, I want to share my experience with you in hopes that you continue advocating for yourself and fighting for answers.
For fifteen years, I have dealt with GI issues that no doctor has been able to concretely explain. By the age of 28, I had already undergone two colonoscopies and every other test under the sun.
A decade ago, I started developing chronic joint/body pain and fatigue. A rheumatologist diagnosed me with an autoimmune disease, and the next said that my issues weren’t rheumatological. A gynecologist diagnosed me with PCOS, and the endocrinologist I insisted on seeing said that was a misdiagnosis. This cycle seemed endless.
As all of these symptoms worsened over the past few years, I began developing new ones including constant lack of appetite, nausea, abdominal and pelvic pain. On top of this, my anxiety and depression were taking over my life. While some lifestyle changes helped improved my quality of life, I was still struggling.
One doctor finally mentioned endometriosis. After much research and more doctors, I realized that this could be the answer. I fought hard to get a referral to an endometriosis specialist and finally on January 14th, 2025, I was able to walk into my first appointment.
With the warmest welcome and eyes looking at me with utmost empathy, my doctor listened. She was there with me. And then, she told me she believed that I have endometriosis. She cried with me in my relief, and we came to the decision that a laparoscopy was the best option. I asked for the earliest date available.
Still, there was doubt. How many times have I taken some kind of test hoping for ANY answer? And this was a SURGERY! A diagnostic surgery… what would happen if I go through this and don’t have answers after all? I was already hanging on by a thread — how would I handle it?
Loved ones tried to reassure me by reminding me that it would be a wonderful thing to not have endometriosis, so in a way it was a win-win. But anyone who has spent half their life searching for answers knows that the win, at this point, is a diagnosis.
I prepared to the best of my ability and tried to stay focused in my life, but I spent those next few weeks in a nervous fog. Partially because I was undergoing surgery. Mainly, because I was absolutely terrified to open my eyes after the laparoscopy and see my partner’s devastated eyes, knowing exactly how much this would break me.
I have spent hundreds and hundreds of hours on the phone making appointments, fighting insurance, begging for referrals to specialists, following up on lab results, going to doctors appointments, getting blood work, taking x-rays, MRIs, CT scans. This has been a part-time job.
It all led to this. One doctor who listened. Who believed me. Who has sat with countless patients crying to her that they are at the end of their rope.
That doctor got to tell me (well, she got to tell my partner), that she found the endometriosis and excised it. That she found a cyst on my left ovary, and removed it. And that she found interstitial cystitis, and treated it.
There is much more to express, and I will. But for now, this is where I am and this is what I have to share. I am still processing. Still in shock at what my body went through during the surgery. Absolutely amazed at how each day I see my body healing itself. Incredibly proud that I kept going. Curious as to what comes next. Deeply grateful for the healthcare I had access to, the support system that I have, and the safe home I was able to return to and recover in. This is an immense privilege.
I don’t know what comes next — I am still fully in recovery mode. But what I do know is that when I was in the thick of it, I wanted to hear stories about people who actually got to the light at the end of the tunnel. So here is one little story of hope.
If there are specific questions that I can answer that will help you on your journey, please let me know and I will respond in my next essay.
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