When I got back to the States, I talked to my parents again about that horrendous day. They both expressed concern that it could be a sign of endometriosis, and insisted I see a doctor about it. So I did — many of them. They conducted a few ultrasounds, but didn’t see anything concerning. “It’s probably just bad cramps,” they said. “Let’s try a different birth control,” they said. That’s how it went for a while — with no amount of Advil, or changes in birth control, making a difference — until I somehow ended up at a urologist’s office. He told me about a disease called interstitial cystitis, a bladder pain syndrome with very similar symptoms to endometriosis. Though he couldn’t say for sure, he thought that might be what I have, and I received a few rounds of bladder medication just in case. I was thrilled to have a diagnosis, and convinced myself the medication worked.
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In reality, though, I couldn’t say for sure. My pain wasn’t constant; it came and went as it pleased, with no major rhyme or reason. When it went, I didn’t know if it was because of the medication, or because it was just on a break from torturing my body. Either way, I was appeased for the time being by the bladder meds. Then, I moved to New York and stopped receiving care, and pretty much ignored the whole problem for a few years.
Which brings me to a month ago.
Back in Chicago now, I had another instance of the so-painful-it-makes-me-nauseous cramps, and texted my mom through tears asking if she knew a urologist I could see to continue treatment for interstitial cystitis. The next day, I had an appointment with a urogynecologist she insisted was amazing. I told him my whole sordid history, including the fact that previous doctors ruled out endometriosis.
“How did they rule it out?” he asked. “I don’t know, through ultrasounds, I guess,” I responded. “The only way to truly rule out or diagnose endometriosis is through surgery,” he said. So there we were. Based on my years of pain and symptoms, he recommended doing the laparoscopy so he could see for himself whether it was endometriosis, interstitial cystitis, or none of the above. But ultimately, it was my decision. After all, this wasn’t some You’ll die if you don’t have this surgery or You have a potentially malignant tumor that would definitely be removed surgery. This was a We don’t really know if this surgery will solve anything, but it might give us more information surgery.
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At first, I was gung ho about having the surgery. Finally, something that will tell me whether or not I have endometriosis—and my doctor recommends it, so why not? But the more I’ve thought about it, the less sure I become. At another recent appointment after we scheduled the surgery, he asked how my symptoms have been. (He had been treating me with bladder medication in case it really is interstitial cystitis.) I told him I haven’t had any horrible pain since I first met with him, and he asked if I still want to go through with the surgery. The question threw me for a loop. He was doing his due diligence and making sure I’m totally on board, but my brain thought, If he’s asking and not insisting, then maybe I shouldn’t be doing this. Still, I told him I do want to move forward with the procedure, and he reassured me that he really agrees we should, and it’s important to get an answer one way or another considering my history.
