A true account written for all the women (and their families) who may be going through a similar experience. By Amy Goerwitz.
At my last annual exam my family doctor noticed that my right ovary was enlarged. To investigate why, she sent me for a pelvic ultrasound. Sure enough, something was there that didn't belong, and it was pretty big, too. In fact, it was as big as a hockey puck, 3 inches high and wide, and about 1.5 inches deep. The news couldn't help but make me worry because the growth could have been any number of things, both malignant and benign. Since my family doctor was a generalist and did not know the specifics of ovarian masses, she referred me to a gynecologist.
The gynecologist did her own exam, looked at the ultrasound results, and, on the off chance that growth might go away on its own, recommended a second ultrasound a month after my first. I didn't like having to spend a month wondering what was growing inside me. My father-in-law had recently been treated for an aggressive cancer, and, although the specialist assured me that my mass was very unlikely to be malignant, I wanted to be doing something about it, and not just waiting around.
I tried not to think too much about it as the month passed. When I finally returned for the second ultrasound it revealed no change in the mass. Although the ultrasound revealed to my gynecologist that the mass was not changing (rapidly, at least), it couldn't tell her much about what it was, since all an ultrasound really does is show how people's insides reflect sound waves. The only additional information my ultrasound(s) gave my gynecologist was that the mass wasn't receding; that, if it was cancer it wasn't a fast-growing kind; and that it wasn't a classic ovarian cyst.
The gynecologist, after considering my age at the time (35) and medical history, was pretty sure that my "alien," as I had started calling the mass, was an endometrioma. But only through surgery could she determine whether her feeling was right—or whether I had something more serious, like cancer. Surgery would also allow her to see the extent of the growth and, with any luck, remove it. Before meeting with her I had researched endometriomas and found out that surgery was the recommended treatment, so I was not surprised when she advocated it. At that point, it seemed like the only sensible course of action.
My endometrioma, also known as a chocolate cyst, differed from a true ovarian cyst in being made from endometrial tissue that had migrated from the uterus and attached itself somewhere else (in this case, my right ovary). Although similar to endometriosis, endometriomas form balloon-like (or in my case hockey-puck-like) shapes. Every month, the endometrial tissue bleeds a little bit into the balloon, causing it to grow. It's kind of like a balloon that slowly fills with blood. Over time, the blood turns a dark chocolate-brown color; hence the name "chocolate cyst" (see the photo, left; from the ARHC website).
My endometrioma didn't hurt (except in retrospect I realize that I felt a dull thud inside me during sex). In fact, I had no idea that it was even there until my family doctor found it. My gynecologist reassured me that I did not need the surgery immediately; the mass might have been there for quite a while, and I could schedule the surgery sometime during the next few months at my convenience. The only thing I did have to worry about was the possibility that if the endometrioma kept on growing, it might burst, spreading its contents throughout my abdominal cavity, irritating my internal organs and causing a lot of pain. Two months later was as early as we could arrange a mutually convenient time, so we scheduled the surgery for then.
When I agreed to the surgery, I had hoped that I it could be scheduled right away. I had never had surgery before, and I wanted to get it over with. When it turned out that I had to wait two months, I decided to try not to think about the surgery until a week beforehand. I knew that if I worried about the surgery every day that I could become obsessed with it, and that my life would become more stressful. So I did not tell my coworkers what was up, because I did not want to my surgery to become the main topic of lunchtime conversation for the next two months. I did, however, tell my family and long-distance friends about the surgery. They gave me the support and advice I needed, without me having to deal with daily comments.
Most likely the surgery was going to end up as an outpatient procedure called a laparoscopy. The surgeon would make three small incisions, one in my belly button, the other two below my pubic hair line, and then she and her assistant would insert some instruments: a camera, a light, and various tools. She would be able to remove the mass and send me home the same day. My life would be back to normal in a few days.
If the surgery had any complications, though, it would change into a laparotomy—a more invasive procedure that would require my doctor to extend one of the small incisions by my pubic hair to three inches to allow her more maneuverability. A laparotomy would also require me to stay in the hospital for a few days and would take 4-6 weeks to recover from. Because the gynecologist could not tell whether the growth was next to my right ovary or embedded in it, I gave permission for the ovary to be removed, if necessary. In addition, because I had not be able to get pregnant for the last seven years, the doctor suggested that she check to see if my Fallopian tubes were blocked.
In case I turned up with cancer, the doctor also asked if she could remove any other organs. Because I would want to investigate the medical alternatives if the mass was malignant, I said that I would rather be awakened and told what was going on and asked permission to schedule additional surgery. In retrospect, I am not sure how much research I could have done while recovering from surgery, but I still would rather be able to discuss the situation with my husband, even if I ended up returning to the operating room the next day.
The anxiously-awaited-for surgery day arrived at last. I decided that, since I was not planning on other abdominal surgeries any time soon, that I would try to enjoy this one (as much as that's possible) and pay close attention to everything that happened. I was curious about the process, and not particularly squeamish. I had often heard that patients who are involved in their treatments recover faster, so I wasn't shy about asking lots of questions. My doctors didn't seem to mind my desire to know so many details.
I showed up at the Women's & Infants' Hospital at 7 a.m., having refrained from eating since midnight the night before, as my doctor had instructed me. I found a room full of women in sweat pants, accompanied by their husbands, friends, or mothers, all waiting for their own surgeries (I later found out that 53 women had surgeries that day). One by one, we were called into a small room to have our blood drawn for a complete blood count and a pregnancy test. Then we were each ushered into curtain-divided rooms and assigned a nurse. My nurse took my blood pressure, had me change into a hospital gown (putting all my belongings into a labeled plastic bag) and explained what was going to happen. I was also visited by several others, including a resident doctor who would be assisting, the head of anesthesiology, the nurse anesthetist who would be handling my case (he inserted an I.V. line before he left and assured me that he wouldn't let me fall asleep permanently), and my own doctor. I met many people that morning and felt well cared for. My husband was allowed to stay with me until I was wheeled to the operating room.
My surgery was scheduled for 9 a.m., but the room was not ready until 9:30 a.m. I am a photography buff, so I asked my doctor ahead of time if I could see the laparoscope before the surgery began. I also asked if she could give me copies of the pictures taken during the surgery. She agreed to both requests and I was allowed to take my eyeglasses into the operating room to see the camera. Having my eyeglasses with me had an unexpected benefit: They stayed with me all day so I could see wherever I was. Otherwise, with my bad eyesight, I would not have been able to see much of anything until my belongings were returned to me at 9 o'clock that evening. I hate not being able to see, so for me being without glasses might have been more unpleasant than my surgery!
The last thing I did when they turned on the anesthesia was to look at the clock. It was 9:45 a.m. A laparoscopy would last about an hour and half; that's what I was hoping for. If there were complications, the laparotomy would take two or more hours. The anesthesia worked very quickly. I was completely unaware of the many things that the surgery team did to me. In fact, the next thing I remember is being woken from a dream as they wheeled me into the recovery room. The first thing I asked for was my glasses. I looked at the clock and it was 12:15 p.m. - two-and-a-half hours had gone by. I knew without asking that I'd had the more extensive procedure, a laparotomy. I asked anyway.
Meanwhile, my husband had been anxiously waiting through the surgery. The two-and-a-half hour procedure had been, in a sense, harder on him than on me. He sat there wondering until about 12:30 p.m., when the doctor appeared with photos in hand, telling him I was fine. As expected the growth (the blue-tinged thing in the photo [right]) had been an endometrioma, which, unfortunately had been adhering to my appendix and peritoneum. She had switched to the laparotomy to better maneuver around the endometrioma. Had she known ahead of time that my endometrioma was adhering to my appendix, she would have asked permission to remove the appendix. But, since she didn't have my advance permission, the appendix stayed. I am kind of fond of my internal organs, so it is just as well that I didn't have to part with this one.
My doctor visited me in the recovery room at 1:00 p.m., and repeated most of the same information she'd given to my husband to me. In the recovery room a nurse took my vital signs every fifteen minutes and suggested that I get some sleep—a suggestion that I ignored. I hoped that I would not be in a recovery room ever again, so I wanted to remember it. I was fascinated to watch the patients come and go. Did I look as bad as them? I suspected so.
At 2:00 p.m. I was wheeled to my very own hospital room, where I allowed myself to rest. At 4:00 p.m. the nurse came to remove my catheter (i.e., the tube they'd inserted into my urethra so urine wouldn't accumulate in my bladder). No one had told me that I would have a catheter inserted! It turned out to be no big deal, but I still wish I had been informed. I was kept on an I.V. until the next day, with Lactate of Ringers (a solution of electrolytes) and some antibiotics dripping into me. My abdomen hurt from the incision and I was given medication to relieve the pain. I came to really appreciate the hospital bed which allowed me to sit up without using my stomach muscles. It also allowed me to sleep propped up slightly. Because my I.V. made me cautious, I mostly slept on my back—a position that normally I rarely use. I took a nap before dinner.
At 7 p.m. my husband and son came to play cards with me, and I still managed to trounce them at our nightly game of Hearts. I don't even think that they let me win...
At 10 p.m., I finally decided to get out of the bed and use the bathroom. The nurse checked and measured my urine. The only blood I saw was on the toilet paper (which would continue for a couple days). I was allowed to put on my underwear. By the way, I was told to wear loose clothing to the hospital, such as old underwear and a sweatsuit, but it wasn't until then that I realized why. My abdomen was quite swollen from the surgery and the I.V.s. In fact, when I weighed myself three days after the surgery, I had gained ten pounds, and all of it was in my abdomen. I had actually thought beforehand that I might come home weighing slightly less than before—after all, they were going to be removing a part of my body. This weight came off within a week; I just wish I had known beforehand that it would happen.
At 7 a.m. the resident doctor came to check on me. The good news was that everything looked fine, and the doctors were quite proud of their work. But, while removing my surgical bandage, he caused two tape burns on my delicate abdominal skin. During my recovery, these burns would end up to causing more skin discomfort (pain and itching) than the surgical incisions did. Ironically, after the doctors took so much care to hide my surgical scars, these nickel-size tape burn scars are much more visible than the carefully hidden incisions in my belly button and below my pubic hairline. (They faded over time, though, and were hardly noticeable six months after the surgery).
A little while later, a man came to draw some blood for testing. Having my blood drawn is not one of my favorite activities, and I was surprised that no one had warned me that he would be coming. I made sure when my doctor visited me a little while later that I would not need more blood drawn the next day.
After surgery, I had been put on a liquid diet and by the next day I was quite hungry. Broth, Jello, and cranberry juice just did not carry my stomach very far. The nurses had told me that I would need to "pass gas" before I could eat anything else. I asked my doctor about this and she was surprised that I was on a liquid diet. She explained that because she did not operate on my intestines that there was no need to keep me on liquids or worry about how my intestines were working. She changed the order and I was brought a second breakfast. The hospital also brought me some delicious cookies as a mid-morning snack.
The day after surgery my job was to get up and walk around. I was stiff, sore, and walking slowly. I walked the hospital corridors and explored every nook and cranny. There really wasn't much of anywhere to go and I secretly wished the hospital had some treasure hunt or other distraction to make more interesting my walks through the mundane hospital halls.
I went home the evening of the second day after surgery. By then, I had visited both maternity floors and seen the brand new babies. I had also window shopped at the hospital store and read the employees' bulletin board in the basement. I had explored most of the hospital.
The first week of recovery went as I had expected. I did a few things around the house but mostly took it easy. I got used to wearing sweat pants (never my favorite attire). I volunteered for a few hours at my son's school and joined him for lunch one day. I discovered that I could not wear my jeans so I put on full skirts when I went off to the school. In general, I tired easily. But I was determined to do at least little something each day.
I was told that I shouldn't drive for two weeks, which lead me to believe that I would be mostly recovered by then. Every day I was feeling a little better but I was still quite sore. When two weeks came along, I still couldn't wear my jeans, and I was very sick of recovering. I wanted to be well. My lower abdominal muscles were very tender, especially on my left side, which surprised me because my surgery had been on my right side. There were times when I wondered if my doctor had somehow twisted my abdominal muscle before sewing me back together. Meanwhile, my first post-surgical menstrual period arrived on time and, to my pleasant surprise, it was a day and a half shorter than usual. (Interestingly, the surgery had more effect on the timing of my subsequent periods, which varied in their lengths by more than a week. In addition, my face was breaking out more than normal and my hormone levels seemed to be readjusting themselves. I felt like I was going through puberty again.)
At four weeks I could wear my jeans with minimal pain and felt 95% recovered. I had my follow-up visit to my doctor who confirmed that everything was going fine, and that I could resume having sex with my husband. With most of the inflammation gone, my incision created a "dimple" because of how the skin was sewn to a leathery part of my abdominal wall. Though barely noticeable, the incision itself feels very thick. I suspect that part of my abdomen will never be the same as it was before surgery.
At six weeks, I felt 98% recovered, and the memory of the surgery had receded from my everyday thoughts. For months after that, though, I still felt twinges and tenderness near my incision as my nerve endings in that area regenerated.
I wondered sometimes how long I had had the endometrioma. For twelve years (i.e., since I was pregnant with my son), I had been told by various doctors that I had a "tipped" uterus—one that leaned backwards. The recent surgery showed that my uterus was actually anteverted, or pushed forwards, because of the large endometrioma behind it. Since the endometrioma had not grown noticeably in the three months from when it was first measured until it was removed, I couldn't help but wonder if it had been there a long time, and that our (new) family doctor had simply discovered what the other doctors had missed. Maybe all the earlier doctors had felt the endometrioma and thought it was my "tipped" uterus. I will never know the answer to that question. Maybe some month I'll discover (by implication) that it was the endometrioma that had been causing my seven years of secondary infertility, and that the laparotomy had actually cured it.
Throughout my ordeal, I met many women who had undergone similar abdominal surgery. These women offered their support and told me their stories. I am amazed at how common abdominal surgery in general is, and, specifically, how often women have operations on their reproductive organs. These operations have become commonplace and are often taken for granted.
Is it really possible that Mother Nature designed our bodies so poorly? Or is surgery just the "easiest" cure for common problems? I confess to discomfort at how quickly physicians put women under the knife—although in my case I'm sure it was the best course of action, given the current state of medical knowledge and practice.
It is with some reluctance that I have acquired this new bond that connects me with so many other women. In our modern world, abdominal surgery almost seems like a threshold to a new stage of womanhood.
I hope reading about my experience has made you more informed about any similar experience you may have. If you have any questions, feel free to write to me at the address given below. Feel free also to take a look at the resource list I've put together, and let me know if you think something is missing. Finally, take a long look at the account of these same events, written from my husband's point of view. It may help give you a little perspective on things, and prepare you for how your S.O. might react.
I keep all responses I receive (which are often highly personal in nature) strictly confidential. Some time ago, however, one correspondent wrote me something that seem so poignant and broad in its application that I asked her if I could reproduce it here. I placed her (Anne's) story, along with mine and my husband's, in the stories section of this web site. Since then I have received permission to reproduce several more endo-related stories. See the note on the stories page about adding a story of your own.