My endo story part 2: the surgery

Once I found out that a chocolate cyst on my right ovary was the cause of my pain, I was relieved. I certainly wished it would have been the type of cyst to go away on its own, but at least I had a diagnosis—and an end to my pain and discomfort was in sight (or so I thought).

The day of my laparoscopy, my husband and I arrived at the hospital bright and early for the usual surgery prep, which always seems to involve a lot of sitting around and waiting. Once I was wheeled back for surgery, I remember talking to my doctor for just a moment before the anesthesia hit.

The next thing I (vaguely) remember is that incredibly frustrating state where you're trying rather unsuccessfully to battle your way out of the murkiness that comes from waking up from surgery. I've only had anesthesia a couple of times in my life, but every time I grow increasingly frustrated at those first few moments when I desperately want to stay awake and lucid but just keep slipping back under.

Soon after I woke up, my doctor came in to tell me that she had successfully removed a rather large chocolate cyst but that she had to take my right ovary, too. She also told me that while she was in there, she spotted a few spots with scarring that were signs of endometriosis on both sides of my body. None of this really sunk in at that point because I was still so groggy—later, I had to confirm with my husband that what I thought my doctor said was actually what she'd said.

At that point, I didn't feel remorse over the loss of my ovary or concern over mention of endometriosis. At that point, I was just incredibly happy the surgery went well (surgery, and all its inherent risks, scares me). At that point, I was just glad that my doctor was able to remove the cyst and ovary without opening me up more. At that point, I just wanted to go home and recover!

Even though a laparascopy is a minimally invasive outpatient surgery (I only have three tiny "band-aid" scars to show for it; and one is hardly visible in my belly button), it's still not fun to recover from.

For one, as usual I suffered from nausea from the anesthesia, which lasted quite some time and prevented me from being able to stomach the thought of food, even though I desperately needed nourishment.

I also struggled with discomfort from the gas trapped in my body from the surgery, which manifested itself in shoulder and chest pain for a period of time.

Then there was the fact that the surgery was right around my abdomen—which you don't realize you use for pretty much every movement. It was incredibly difficult even to sit up to take a drink of water or get up off of the couch or out of bed to go to the restroom for the first couple of days.

Should you undergo a laparascopic surgery, I recommend a few things:

1. Have someone on hand to help you sit up and to bring you nourishment and water and such the first few days. My husband was around some and my mother-in-law was kind enough to stop by a few times, too, but in hindsight I should have insisted someone be more available because it really is painful to even get up at first by yourself.
2. Ask for a stool softener. Trust me on this. I had no idea I would need one after surgery and the result—shall we try to say tactfully—was rather painful.
3. Remember that just because your surgery isn't minimally invasive doesn't mean it's not going to take its toll on your body. Recovery will take a while. Don't expect to be back to your usual tricks within a couple of days, as I did.

I had no complications and recovery from the surgery went well, despite the fact that my high expectations for how quickly I'd recover were dashed rather quickly.

At my follow-up appointment with my doctor after the surgery, she gave me some information on endometriosis and mentioned that if my husband and I started trying for kids and had trouble, she could refer me to a fertility specialist who could assist.

I still didn't think much of=n the diagnosis at that point, honestly. I figured that the cyst was the problem, that it was a bit of a fluke, and that now it was gone I'd be back to normal. The scarring she showed me didn't seem like much to worry about, and if my doctor wasn't concerned, neither was I.

Sure, the fertility concerns that accompany endometriosis gave me pause, but my husband and I weren't quite to the point where we were worried about that yet, and I figured there was no use stressing about that until the time came.

Little did I know that I'd be thinking about endometriosis a lot more—and a lot sooner—than I expected.

Next up: The pregnancy and beyond.
Previously: The cyst.

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