Why I Had a Hysterectomy at 36
For many months after my surgery, I still dreamt that I was bleeding. I would glance down — blood all over the place, soaking my underwear, running down my thighs. A lapful of blood. Damn, I’d think, and then Oh well, there it is again. Resignation would set in.
Then I’d wake up, and joy! No blood. No periods, no clots, no breakthrough bleeding, no cramps, no birth control pills, no aching lower belly. No tampons and pads in every purse, overnight bag, bathroom cabinet, glove compartment and desk drawer, just in case. No planning vacations around the periods (only to have them interrupted anyway by kamikaze between-period assaults).
This is the story of my hysterectomy at age thirty-six: what my experience was like, why I made the decision I did. It’s obviously not the right choice for every woman, but it was definitely the right choice for me.
In the Beginning…
The day after my nineteenth birthday, I underwent emergency surgery to remove a ruptured ovarian cyst. I had been in the university hospital all week as they tried to determine what was causing my sudden, incredible abdominal pain. Two pelvic ultrasounds later, the university doctors decided it was probably cysts. They weren’t entirely sure, but they needed to do something. So they sent me downtown to the “real” hospital for surgery.
I went under at six o’clock on a Friday night, not knowing if I was undergoing merely exploratory surgery or would wake up with only one ovary. (If they found that both ovaries needed to be removed, a second surgery would be scheduled.) The surgeon put a scope in my belly button and verified the presence of the cysts: one on each ovary. The left cyst had burst; the right one seemed likely to.
I was lucky. The surgeon was able to cleanly remove the cysts, leaving both ovaries in place. However, as I lay in the hospital recovering from the six-inch incision in my lower abdomen (below the “bikini line,” as they call it), he told me that I would now be taking birth control pills — until menopause, pausing only if I wanted to get pregnant. Nineteen was very young to develop ovarian cysts, so they would almost certainly grow back. Because the cysts form on the nodes that the ovaries create when they produce an egg each month, taking oral contraceptives to suppress ovulation was the only way to be (relatively) sure they would not grow back.
I was only nineteen. I didn’t question the fact that I was basically given no choice in the matter. I felt grateful to the doctor for saving me and in awe of the medical system. So I went on the pill.
And after I got over the horrors of the possible side effects detailed in the pill’s package insert (blood clots, stroke, heart disease, death death death), I loved it. I enjoyed the extremely regular cycle — my periods now started precisely every fourth Tuesday at three o’clock in the afternoon and were finished by the weekend. I appreciated not having to worry about pregnancy, which I had obsessed about even before I ever had sex. And I very much enjoyed my now-tiny periods and complete absence of cramps. I had always had awful periods, starting in high school, with very painful cramping. Now my periods were not even heavy enough to fill a junior-sized tampon in eight hours, so I went back to pads. It was grand.
When I was twenty-five, my periods changed. Suddenly, they were double or triple what I had grown accustomed to. My period still started on time, but I flooded the little “thin maxi” pads. I had to go out and buy tampons and remember how to insert them. The bleeding didn’t stop by the weekend either; it dragged on. Certain that I was hemorrhaging to death, I went to see my new gynecologist.
“Well,” he explained to me after I told him my symptoms, “it could be fibroids, but you’re awfully young for that.”
“My mother has fibroids.” I didn’t know what they were, exactly, but she had had several procedures to try to alleviate heavy bleeding, with limited success.
“They do run in families.”
He examined me and quickly concluded, “Yes, fibroids. Your uterus is the size of a small lemon, or a six-week fetus.” He wrote me a prescription for different pills and sent me on my way.
I stood in the subway station waiting for the train home, my hand tentatively on my abdomen, trying to feel what the doctor had so easily detected. Something’s in there! I marveled. Growing! It was sort of creepy and sort of fun, in the perverse way that having undergone major surgery in college had been fun: yes, it was scary and painful, but it also made me special in a way. It made a great story. Now the story had another chapter.
I researched fibroids — looked through my dog-eared copy of Our Bodies, Ourselves, and of course talked to my mother. I learned that fibroids are extremely common (even in twenty-five-year-olds), affecting perhaps three-quarters of all women; that they are benign tumors, which do not become cancerous; and that most women don’t even know they have them because they often cause no symptoms and therefore can be left alone.
Fibroids are easy to remove. Most common (fifteen years ago, anyway) was a procedure called myomectomy, where the fibroids are excised and removed vaginally or through a small abdominal incision. Everything I read and heard pointed towards a wait-and-see approach and away from hysterectomy: “the last resort.” I learned I should ask a lot of questions, become informed, take charge of my own medical decision-making, not let the doctor tell me what to do. (Ironically, my doctor didn’t tell me to do anything, except for suggesting a change of pills.)
But the new pills did work, and my nice, light, reliable periods returned.
For about a year and a half, that is. Then I lost a little weight, got married, and during our honeymoon trip to visit my new husband’s family in the southern United States, the demon periods returned. The loss of blood made me dizzy and nauseated, and the cramps sent me to bed several afternoons in a row, the fainting “delicate” bride. I passed clots the size of my pinkie finger (and was told by an old family friend, in a gorgeous Southern drawl, “Oh, that’s nothing, honey, I’ve passed clots the size of my foot!”).
Again terrified, I rushed back to the doctor as soon as we got home, and again changed birth control prescriptions. I mentioned my weight loss, but the doctor didn’t see any connection. However, the fact is that whenever I lost five or ten pounds, my periods stepped up in severity. I asked about hysterectomy, but the doctor brushed the idea away. I very clearly got the message that women in their twenties do not get hysterectomies: certainly not newlywed women.
I never wanted children. When I was a little girl, I did not play with dolls. I read books, wrote stories, and played with tiny ceramic animals who drove around in Matchbox cars on complicated roadways I built out of mud and sticks. When I was in high school, I wrote myself a note to read years later explaining the many reasons not to have children (the world is too crowded, I wanted to have a career, and — vainly — I worried about stretch marks), in case I should forget.
Luckily, my husband also did not want children. I did spend several years arguing with my Jungian analyst who tried to convince me that the reason for this bizarre aversion was some sort of misguided rebellion against my mother, or a failure to mature; but it has always been less of an aversion and more of a lack of positive interest. I have a nephew who is the world’s most adorable child: being an auntie is the best. But I have never wanted to have children.
Again, the new pills eventually worked, a little. I had to go through several different prescriptions before I found one that didn’t make me bitchy or starving or pimply or queasy. I didn’t have crazy-heavy periods; but they weren’t the little light ones I was used to, and they didn’t always stop by the weekend. I now always used tampons, with a pad backup. But the bleeding seemed to stabilize, and I lived with it.
At about age thirty, I had my first post-fibroid-diagnosis ultrasound, to get a baseline image of the size of my uterus. It had reached (on the fruit scale) “larger than an orange,” or about a twelve-week fetus. That seemed like alarming growth to me, but my nurse practitioner didn’t seem concerned.
However, this ultrasound also revealed that my fibroids were “intramural,” that is, embedded within the uterine wall (the myometrium) as opposed to forming entirely inside the uterus. Therefore, they could not be removed by myomectomy without destroying the uterine wall. A hysterectomy would be the only option for removing them, but nobody was recommending such a drastic procedure.
Two years later, I was bleeding even more heavily, so I had a hysteroscopy. This is a slightly more invasive procedure — technically a surgery. A doctor inserts a scope up through the cervix in order to look at the uterine walls from the inside. It is a little painful, and I was nervous about having it done. But I was sure it would show that some fibroids had now grown inside the uterus, causing the dramatic bleeding, and that now a myomectomy would be possible, at least for the new fibroids.
Alas, no: the walls were smooth, clean, lovely.
“I should just have a hysterectomy,” I said.
My nurse practitioner laughed. “Of course not.”
I didn’t push it. Hysterectomy was major surgery, after all; probably a drastic and imperfect solution to my potpourri of problems. If I had a complete hysterectomy, removing my troublesome, cyst-prone ovaries, I’d go into instant menopause and have to decide whether to take hormone replacement therapy. If my ovaries were saved, I’d still have to take hormones so the cysts wouldn’t redevelop.
So I waited. Maybe something better would come along.
In March 2000, I read an article about Dr. John Rock’s invention of the birth control pill in the late 1950s, and the religious and social, as opposed to medical, reasons why oral contraceptives were designed with a four-week cycle. In an ultimately futile attempt to gain the approval of the Catholic Church, Dr. Rock proposed that the regimen should mimic a woman’s natural twenty-eight-day cycle, including seven days of placebo. Apparently, it is perfectly natural and healthy for women to increase the length of their cycles by skipping the placebo pills and going straight to the next active pills. In fact, recent research showed that monthly menstrual cycles are less healthy for women; historically, women have had far fewer periods during their fertile lifetimes than we do now. Most women would be pregnant or nursing, not undergoing the monthly wash of hormonal changes that period subject us to. This hormonal superabundance has been linked to many serious diseases, including breast and ovarian cancer.
That was all well and good, but the exciting news that I took away from the article was, Wow, I could have a period once every three months! I immediately asked my nurse practitioner about it; she had not heard of the new research. I sent her a copy of the article. She worried; she had been taught that longer cycles were unhealthy, that increased pill usage would cause cancer. She researched further and talked with other practitioners who were trying the new regime with their patients. Eventually, she agreed to let me switch from my tri-phasic pills to a low-overall dose. Unfortunately, it also involved a lengthy and frustrating educational process with my insurance company’s pharmacists who kept trying to explain to me that I could not have a refill, since my ninety days were not yet up.
But once we worked that out, the three-month cycles were lovely. No bleeding for twelve straight weeks! Heavenly! Best of all, when the periods came, they weren’t any heavier than they had been when I bled every (three or) four weeks. I had worried that all that saved-up blood would come back to haunt me, but it doesn’t work that way. I really felt like I was getting away with something. I told all my friends. (In fact, my nurse practitioner soon told me that a majority of her pill-taking patients switched to the extended cycle.)
Pain in the Head
Then the headaches started. Sometime during the first few days of my period, I’d get these crushing, impossible-to-ignore headaches that would send me to bed for a day or two or three. I would take megadoses of ibuprofen, which would tear up my stomach. I would sleep as much as I could get away with, but often I had to tough it out and go to work. I was in agony; I felt like I was blinking through a sick yellow fog, as if I had a demon living in my temples and the base of my skull. It took a few cycles for me to make the connection, since my periods were now so infrequent. But I started charting them, and indeed, it was a menstrual headache.
Back to the doctor, where I was told that they had never heard of menstruation causing headaches. “You can increase the ibuprofen if you want.” I didn’t much like that solution. A friend suggested acupuncture. The acupuncturist asked me a ton of questions, put needles in me head to toe, and gave me noxious-smelling tea — but the acupuncture worked. More or less. For a while. Oh well, they were only four times a year. I could live with that.
I had another ultrasound: large grapefruit.
In January of 2002, I went on a yoga retreat in a lovely rustic setting, three large teepees in the thickly-wooded mountains by a rushing river. I had been doing Ashtanga yoga daily for four or five years by this point and was thrilled to be at this gorgeous place with other serious practitioners, sharing vegetarian food, dipping into the hot tub, walking through the woods.
In the middle of an afternoon practice session, I felt the familiar sensation of a period starting — but I was only in week nine, still three weeks away from my period. I rushed out of the asana room to the dark privy down the hill: yes, dammit, I was bleeding. I didn’t even have any pads or tampons with me; I crammed toilet paper in my panties until I could beg a tampon from another yogini. I bled on and off for the rest of the retreat and called my nurse practitioner in yet another panic when I got home.
“Maybe twelve weeks is too long for you. Maybe you should back off a little, to nine weeks,” she suggested. “Go ahead and stop taking the pills now, have a period, and then start up again.” I hated the idea — I didn’t want any more periods, with the mess and the pain and the inconvenience and now the headaches — but the breakthrough bleeding was scary. Perhaps the twelve-week cycle was not for everyone.
She offered, “I can make an appointment for you to talk to a surgeon if you like.”
“But I can’t have a myomectomy, my fibroids are embedded in the lining of the uterus.”
“True, but there are some new procedures coming along. One of them might be appropriate for you.”
I told her I’d think about it.
The nine-week cycle seemed to work, but then it too failed. I went to a six-week cycle. Soon I would be back where I started and would have twelve three-day headaches a year as well: thirty-six days, a month of pain. I started computing my sick leave: I would use it up quickly at this rate. I did not want to be a sickly person; I had always been healthy. My body seemed to be rebelling against me, taking over my life.
I tried total vegetarianism; I tried lots of meat-eating; I tried giving up alcohol. A friend performed “energy work” on me, holding my feet as I lay on the floor in her warm dark room, crystals sitting on my abdomen over my womb, as she visualized the fibroids breaking up and passing away harmlessly. I now could feel the fibroids often: as I turned and twisted in yoga, if I ate a big meal, during sex. It felt like a tightness, not so much painful as pressure-full, an impediment. I asked for something stronger than ibuprofen for the headaches and was given a migraine drug which made me loopy and lightheaded but enabled me to function.
I was now bleeding almost all the time. I was on the six-week cycle, so I would have a heavy period (with the accompanying headache) every six weeks. Then a few days after my period had ended, it would start up again: a slow dribble, sometimes more, sometimes almost nothing. Sometimes it would stop again for a few days, but as soon as I let my guard down (wore light-colored pants or didn’t make sure I had a pad in my purse), there it would be again: red in my underwear, red on the toilet paper: Surprise! I’m still here!
And at some point, I just decided, That’s enough. I was ready to talk to a surgeon, to learn what these “new procedures” were. Yet in my heart of hearts, I knew I wanted a hysterectomy. I didn’t know how long it would take to convince the doctor, and I was worried about taking so much time off work to recover. I knew thirty-six was still young. But I had to do something.
There was a six-week wait to see the surgeon. During those six weeks, I bled, I waited, I thought about how nice it would be not to bleed. I made lists and lists of questions. I researched on the internet and found few options that I didn’t already know about, other than a few drugs with drastic side effects.
I met the surgeon and liked him instantly. He was tall and gawky, just doctor-like enough to reassure, but refreshingly informal. He spent forty-five minutes with me, answering every question. He had looked at my charts and records and knew what I had been going through. I admitted to him that I was considering hysterectomy, and he didn’t dismiss the idea. He told me hysterectomy was a good, permanent solution to fibroids, but that it was major surgery and that (obviously) I would be rendered unable to have children.
He went over every option with me, in great detail:
1. Do nothing. Live with the symptoms as I had been. In fifteen or twenty years, I’d get to menopause; most fibroids shrink then.
2. Myomectomy: surgical removal of the fibroids. I did not think this was an option because my fibroids were embedded in the uterine lining, but he wanted to do a hysteroscopy to see for himself. He had already scheduled a room, and we would go straight there after this consultation.
3. Uterine artery embolization: a surgical procedure that interrupts the blood supply to the fibroid tumors, causing the fibroids to shrink and disappear. As he explained it, this is far less invasive than hysterectomy, but in his experience, it causes a lot of pain and is not a permanent solution: the fibroids tend to grow back. Because the blood supply to the fibroid is also part of the blood supply to the uterus, it cannot be cut off completely, so the process of the fibroid “death” is slow and, reportedly, agonizing. He did not recommend this.
4. Ablation. This procedure cauterizes — burns off — the endometrial lining of the uterus. In many cases, bleeding completely stops after the procedure, sometimes permanently. According to the surgeon, this is an outpatient procedure and relatively painless; you can return to work within a day or two. But it is only about 60% effective, and it does not remove the fibroids.
5. Hysterectomy. Total surgical removal of the uterus. If the uterus is not too large, the surgery can be performed vaginally (it helps if you’ve had children). Options include removing the cervix or not, and removing the ovaries or not. Recovery is generally six to eight weeks.
In the procedure room, I climbed onto the table for another hysteroscopy. Same story: clean, smooth walls. “Well, you’re right,” he said. “No myomectomy for you.”
“I really think I want the hysterectomy,” I said, my feet still in the stirrups. “But I’m worried about my ovaries, if we leave them in: will the cysts grow back?”
“I’m willing to do the hysterectomy, if you want. And at your age, I would definitely leave the ovaries in, and I wouldn’t worry about the cysts. I think the risk is pretty low. But you should go home and think about it. It’s a major decision.”
Wow, I thought. He’s willing to do a hysterectomy! And he thinks the cysts won’t grow back? That’s news.
We set up an appointment for late the following week to go over whatever decision I made.
I went home. I felt sure I had already decided. I tried very hard to remain undecided, to think seriously about all the options. I hated the other options, every one of them. I loved the idea of hysterectomy, of having the hateful thing gone out of my body, of having the bleeding guaranteed to stop forever. I was even beginning to love the idea of six weeks off work to lie around the house and recover.
The question of the headaches remained an open one. Since nobody knew what exactly was causing them — was it the bleeding, the pill, my own hormonal cycle? — nobody could say whether the surgery would cure them.
I talked to my husband. I talked to my friends, my co-workers, my brother, my mom and dad. I still felt sure, though I tried to act as though I was still deciding. (I don’t think I fooled anybody.) I discovered that many of our women friends, especially older women, had had hysterectomies, a surprising number of them in their thirties. “Greatest thing I ever did,” I heard over and over again. “You’ll never regret it for a moment.” My grandmother had had one; all three of my aunts had. It felt like my mother and I were the only two women in our family with wombs.
Nearly all of my friends were extremely supportive of the idea, once I told them as many of the details as they could stand to hear. My mother gave me a pleasant surprise: I had expected to hear one final lament about grandchildren, but instead she said, “Wow, you really have been through a lot with this.” She offered to come down and take care of me when I got home from the hospital.
I also did try very hard to reconsider the question of having children. Yes, I’d been certain all my life, but was I really certain? Was I willing to close that door forever? I visualized being pregnant, having an infant, a child. Holding, carrying, dressing, playing with a child. Breast-feeding a baby. A little person who would be a part of my husband and of me. But I couldn’t want it. It did nothing for me. I kept returning to my own life, the completeness of it, my satisfaction with it. Nothing was missing.
I went to my next appointment with a host of questions — what exactly would my recovery be like, what exactly was going to happen in the surgery, how many days would I be in the hospital, what were all the potential complications. The surgeon spent nearly an hour with me, answering all my questions in detail. I asked him how many hysterectomies he had performed; he laughed and said, “Oh, I don’t know, probably a thousand.”
We discussed anesthesia. He recommended a new method, an epidural, plus a sedative: safer than general anesthesia. He called it “the Cadillac of post-operative pain care.” I was worried about being at all conscious during the surgery. He said I would probably not be conscious, but assured me that we could decide later after I had talked to the anesthesiologists; he put “epidural/ general” on the form.
He was a little concerned that because I had had abdominal surgery years before, there might be “adhesions”: internal scar tissue, areas that would require extra work and could involve other organs. He thought the surgery would take anywhere from one and a half hours (if simple) to three hours (if he found lots of adhesions). There was no way of telling what would be the case until he opened me up.
I signed paper after paper. I agreed that I understood I would be unable to bear children (about ten different forms making absolutely sure I was clear on this). I acknowledged potential complications, such as infection, hemorrhage, injury to adjacent structures, trouble with anesthesia. I gave instructions about blood transfusions (if necessary). Then we scheduled the hysterectomy.
The surgeon was about to leave for a one-month vacation in Italy, so the wait would be six weeks. I thought that was good, that it would give me time to get used to the idea, to prepare at work.
Actually, it turned out to be excruciating. I had plenty of time to remember how much I’d hurt after my ovarian cyst surgery, how long that recovery was. I obsessed over increasingly bizarre worries: the surgeon would be off his game, just returning from vacation, jet-lagged, his concentration would be lax…by the weekend before the surgery, I was imagining that there would be an earthquake while I was on the table and that the surgeon’s hand would slip and injure me beyond repair. (Hey, it was San Francisco: it could have happened.) Also, I had been told that if I came down with a cold before the surgery, they would have to postpone it, so I became rigid about avoiding germs. (It didn’t help that my sister-in-law was scheduled to have her wisdom teeth removed the weekend before. She came down with a cold, and the oral surgeon wouldn’t perform her extraction.)
Finally, the day arrived. At my preoperative appointment, the day before the surgery, a nurse took my vital signs, asked a ton of questions (including whether I had had a cold recently), and the assistant surgeon did a pelvic exam. I had more questions at this point, particularly about the anesthesia: when would I be able to talk to the anesthesiologist? The assistant surgeon told me there would be ample time before the surgery tomorrow.
I was so nervous I could barely sleep. Just knowing I was not supposed to eat or drink anything, even water, made me all the thirstier. Somehow the night passed.
My husband drove me to the hospital at the crack of dawn. We waited forever, first in a general surgical waiting room, then in a surgical prep waiting area. A nurse started me on an IV: “Breakfast!” I wasn’t at all hungry, but I was relieved to see all that liquid going into my arm.
Then everything started to happen fast. I was wheeled into the surgery area. A member of the anesthesia team introduced himself to me, said he’d be assisting. Did I have any questions? Oh yes, I did. I explained my concerns: it was vital that I not be at all conscious during the surgery. Suddenly, my surgeon was there too, bright and cheerful. “Let’s just do the general! Then you can be sure.” I was so relieved. One member of the team seemed to be there only to comfort me in my fear and pain. He stroked my head as I leaned forward for the long epidural needle to be inserted in my back and told me everything was going to be fine, that I was doing great.
Then I was wheeled into the operating room…all was confusion…then there was nothing…then I was waking up in the recovery area, and several hours had gone by. I was very cold but couldn’t easily move and was afraid to try. Then the surgeon was floating over me. “It went great! We got it out cleanly, there was no endometriosis, your ovaries looked great, it only took an hour and half!” Then he floated away.
I was in a hospital room, full of flowers and potted orchids and books. The first night, I was woozy and confused; by the next morning, I realized I couldn’t feel my legs. I insisted they pull that damn epidural out; soon, I had my feeling back. A cheery nurse made me get up and walk. It was exhausting and painful; I held my hand rigidly to my abdomen. It felt like everything would fall out if I didn’t.
Some time that first day, the surgeon came to see me again and gave me more details about the surgery. He told me he had been more worried than he let on that the surgery would be difficult because of possible adhesions and endometriosis, so he was really thrilled that it had gone so well. Also, he told me that my uterus was riddled with dozens of small fibroids, that it looked “like an asteroid.” I sort of wished they had saved it to show me.
Recovery and Aftermath
My recovery was wonderful. The three days my mother stayed was just long enough for me to feel comfortable taking care of myself: the day she left, I was able to put my own underwear on. I could go up and down the stairs slowly but easily. I walked every day, first inside the house, then outside, trying to increase the distance each time until I exhausted myself and cut back a little in the third week.
After about a week and a half, I started trying to do some yoga. After about three weeks I went back to my Ashtanga class. It took me a few months to build up to being able to do all the poses I had been doing before surgery (especially the backbends), but I could do more almost every day — with a few little relapses whenever I pushed myself too hard.
In the fifth week of recovery, my husband and I spent the week in a small town on the ocean. Walking on the beach really helped my recovery. At one point, he pointed out I was still walking rigidly, as if in pain; I realized that, yes, I was in some discomfort, but I was also holding back unconsciously. I tried walking more fluidly and found that I could. Also in the fifth week, we tried sex again. We were both nervous at first, but everything went quite well, thank you.
Mostly, though, I spent my days on the sofa, reading a giant pile of books. After six weeks of this life of leisure, I went back to work. I was still a little weak, but my strength returned quickly.
It has now been sixteen years, and I have not had a moment of regret. After the surgery, I relished being hormone-free for the first time since I was nineteen. Until my late forties, I had regular “menstrual” cycles: I could sort of tell when I was ovulating. The headaches never returned.
I did still have periods…since I still have a cervix, essentially just the stub-end of the uterus, a tiny amount of endometrial lining sloughed off each month. It was all of one drop, the cutest thing ever. It was as if Barbie had a period. I diligently kept track of it…till I started having hot flashes. But that’s another story.
And I haven’t had a period dream in years.
Originally published as: One woman’s choice: fibroids and hysterectomy. Women’s Health Journal — January 1, 2004, Latin American and Caribbean Women’s Health Network.