My endo story part 1: the cyst

Some women don’t find out they have endometriosis until they try to get pregnant and have trouble conceiving. Others battle symptoms starting as early as their teens—and often it takes many years before they are accurately diagnosed with endometriosis. I am (perhaps) lucky in the respect that I did not have problems with endometriosis until my mid-20s and was diagnosed (relatively) quickly.

(Although, in hindsight, I actually think I may have been suffering from endometriosis symptoms in my early 20s, too, including some bouts of rather intense abdominal and back pain. But I was told at the time the problem was very small kidney stones—although I’m not even sure that the doctor who diagnosed me was confident that was the problem.)

In the spring of 2009, I felt some pain and pressure in my lower right abdomen. At first I thought perhaps I had pulled a muscle, so I didn’t do anything about it for a day or two. But the pain and pressure got a bit worse, to the point where it was uncomfortable to sit down, and certain movements when standing exacerbated it.

As so many people in the Internet age do when faced with an unknown health problem, I googled my symptoms. According to WebMD, that bastion of self-diagnosis, the problem might have been my appendix. 

Mention certain things, like your appendix, and you can get into the doctor pretty quickly. When I saw my general practitioner, she asked some questions, felt my abdomen, and looked rather alarmed. She immediately put in an order for a scan at the hospital and told me to head right over because she, too, was afraid it was my appendix.

Ah, the doctor's office. An endo sufferer's favorite place.

I spent a few hours at the hospital, chugging the required liquids, holding still for the scan of my abdomen, and waiting for the results. Eventually a nurse walked into the waiting area, which was full of other people preparing for tests or waiting for results, and promptly blurted out in front of everyone: “It isn’t your appendix. It’s just an ovarian cyst.” And then she walked away.

I left, fuming, because first of all I’m pretty sure the way she told me my diagnosis violated every single health care privacy law known to man. And because she didn’t provide me a single ounce of additional information—not even a “don’t worry, your doctor will call you,” or anything like that. She just told me I had an ovarian cyst and sent me away as if this explained everything.

So, of course, I rushed home and started googling again. I learned that ovarian cysts are pretty common, for the most part are benign, and most often go away on their own.

My doctor’s office finally sent me a notice in the mail a week or two later that said simply that I had an ovarian cyst. Thanks for the news, doc. There was no mention of needing to speak with the doctor, no mention of further tests, nothing.

So, since I’m not a fan of medical treatment unless absolutely necessary anyway, I just went about my business, figuring the cyst would go away eventually, much like a small goiter I once got on my throat.

There were times when I didn’t even notice the cyst and other times when the pain came back in full force (which, I now realize, was probably a result of my cycle). Months went by, though, and it didn’t go away on its own. Finally, in the winter of 2010, I contacted my doctor again because the pain and discomfort was getting worse. I was quite sure the darn thing was getting larger, not smaller. 

My doctor scheduled an ultrasound to get a look at the cyst and, after seeing its size, referred me to a gynecologist in a larger city about 35 minutes away.

It took a while to get an appointment with her, and then I went through another round of ultrasounds of all types—finally—in April 2010 I was told the problem was a large chocolate cyst attached to my right ovary. It needed to be surgically removed.

I couldn’t get an appointment for the surgery until June 2010, but at least I had an accurate diagnosis and knew the end was in sight. My doctor planned to perform an outpatient surgery called a laparoscopy, in which she would make a small incision and insert a tiny, lighted instrument into my abdomen to remove the cyst. If the cyst was too large or my ovary had to be removed with it—which she wouldn’t know until she got in and looked—she would likely have to perform a laparotomy instead. This would mean a bigger incision and a stay in the hospital.

Knowing (at least kind of) what to expect, it was just a matter of dealing with the discomfort and waiting for my surgery.

Next up: The surgery and The pregnancy and beyond.

Photo: benchilada via flickr