Mar 052012

I have been dealing with chronic, often debilitating pain for more than a year, but this is the first time I am writing about it publicly. Many of you have followed the travails with my lower back pain, but this is something different. Lots of medical information coming up, so if that’s not your cup of tea, you can stop reading. The summary: I had surgery, it went well, the prognosis is good.

The first time I experienced severe pelvic pain was in December 2010.The pain was so bad that I vomited, and Colten drove me to the emergency room. When we arrived, they checked me in, then announced that the ER was “on lockdown.” This is one of the closest hospitals to us, but it happens to be the only Level 1 Trauma Center in the area, so it’s where you go if you get shot, for example. They told us the lockdown had something to do with law enforcement, and they weren’t bringing any more patients in beyond the triage area. It was a classic, “What do we do now?” situation. I had stopped throwing up, so I took some pain meds and went home. It lasted for a day or two, then went away.

Then, in July, I had the same feeling: excruciating pelvic pain that ratcheted up from 0 to 10 in less than 10 minutes. I went to the emergency room (where I had morphine for the first time), I had an ultrasound, and doctors diagnosed me with a ruptured ovarian cyst. I followed up with my gynecologist, who noted that it could simply be a one-time thing and we should just keep an eye on it. Then it happened again in November. Back to the ER, another ultrasound, this time the diagnosis was ovarian torsion, a pretty rare thing that happens when you have a big ovarian cyst and it causes your ovary to twist. And I had a big cyst. (I tweeted about this trip to the ER briefly). The torsion resolved itself, so they sent me home. But this time, after the morphine-worthy pain, I had continuing pelvic pain for about a week and other symptoms. It was debilitating, so bad that I couldn’t get out of bed.

I spoke to my gynecologist, who put me on hormone therapy (the birth control pill), and wanted to see me six weeks later to get another ultrasound and see if the cyst had resolved itself. I did a ton of research on ovarian cysts, and there just isn’t that much useful information out there. There are also different kinds of cysts, and that can affect the way you treat them. The treatment options were generally lame: birth control pills, pain management, surgical removal of the cyst (which could always grow back), and worse case scenario was a hysterectomy. In the 6 weeks I was on birth control, I had horrible side effects: constant, extreme nausea, headaches, and debilitating fatigue. I couldn’t work, I couldn’t eat, it was pretty awful. I got my 6 week follow-up ultrasound, and the doctor who did it (not my doctor, another one in the practice) thought the cyst had shrunk. I had an appointment to see my regular gynecologist a week later.

Then, in December, it happened again. I wasn’t crazy about the gynecology resident who saw me in the ER this time around, and seemed to doubt how much pain I was experiencing. She repeatedly called the cyst “not that big,” and didn’t really have an explanation for my symptoms. I called and caught my gynecologist up to speed since I wanted to discuss options when I came in for my appointment. I also had some new symptoms. When I saw her in the office, she had gotten all my previous ultrasounds, all the ER reports, and read them over. Now, she suspected that in addition to the cyst, I had endometriosis. When I did my research, I discovered that I had all of the common symptoms (except infertility, because I’ve never tried to get pregnant, so I don’t know). Endometriosis is notoriously difficult to diagnose because you can’t see it on an ultrasound. And even if they do diagnose it, we’re back to crappy treatment options: birth control pills, pain management, or surgery. I talked to my doctor and agreed to a laparoscopy: she could go into my abdomen with a little camera and assess the situation: see what the ovarian cyst was like (and remove it) and see if there was endometrial tissue elsewhere.

Last Wednesday, I went in for a hysteroscopy (to remove a cervical polyp found during one of my many ultrasounds) and a laparoscopy, which was mostly going to be exploratory and to get rid of that cyst. When she got a look inside my abdomen, it was much worse than anyone expected. I had multiple cysts on my left ovary (that she suspects are endometrial, not functional, cysts, but we’re waiting on the pathology report), endometrial adhesions surrounded my left fallopian tube causing it to twist, and endometrial adhesions on the walls of my bowel. So, she removed the ovary and fallopian tube and repaired the bowel wall.

When I woke up from general anesthesia, I was really out of it. I was in one recovery room, then moved to another room after about an hour, where I finally saw Colten. He brought me up to speed on the details of the surgery and even showed me a picture of my ovary! Everyone agreed that it had to come out and that I must have been in a lot of pain judging by the way it looked in there. I was so nervous about post-surgery nausea and vomiting, since I had experienced it in the past and generally have a pretty sensitive system. But I felt okay.

Because the surgery was longer and more complex than expected, my recovery will be longer. I have some pain, bruising and swelling in my abdomen, three incisions, and I feel exhausted. My belly button hurts. (Plus, I had to remove my belly button jewelry. I have had this piercing since 1991. I can’t put it back in because of the swelling. Truly the end of an era!). I feel very loved and cared for by friends and family, who have been calling, emailing, and texting their well wishes. It has felt strange not to be on social media, and when I have gone on, I wasn’t sure if I wanted to share what was going on. I hope it helps explain why I might be quiet on Twitter and Facebook this month. I’m supposed to be taking it easy and not working (nearly impossible for me to do), so I am trying to follow doctor’s orders. Thanks for reading.