Why I blogged my hysterectomy
- Published: 09 April 2011
- Hits: 3861
When Lorraine Berry chose to write about her decision to have her uterus removed, she received a nasty email the day before her surgery from another woman who denounced her choice to be public about what she was about to undergo. Six years later she’s healthy and has no regrets about the procedure – or blogging it.
10 April 2011
One of my blog readers asked me if there have been moments when, as a blogger, I feel that I have revealed too much of myself. The answer is not straightforward.
As a writer, and as a teacher of creative writing, I urge my students and remind myself that putting certain things down on paper requires a relentless honesty, and sometimes, that honesty requires courage.
So, sometimes, as I'm hitting the 'post' button on a piece, I have done so with shaking hands, worried that I'm about to get lambasted. And yet, I also feel as if I could not not write about what I needed to say. I have never regretted posting anything.
BUT, what has happened more often is that people reading my blog posts have felt that I should not have written about what I've said. So, I've had my usual share of being told that I'm an uptight feminist who can't get laid, or, ironically, a slut who shouldn't sleep with men on the first date. Whatever. Most of that stuff I can shake off.
But in 2005, I chose to write about my impending hysterectomy, about why I had made the decision, and what the medical reasons for doing so were, and about my own confusion as a feminist about what it meant to willingly give up my uterus.
The reaction to that piece hurt me.
Recently, I combined two pieces that I had written about my hysterectomy into one long blog post. The purpose of doing so was to reclaim my body, my decision, and to let women know, once again, that medical decisions they need to make in consultation with their doctor should not be the subject of other people's derision.
I broke my own privacy to try to make it okay for other women to make private decisions.
Ironically, when I posted the following on a feminist site, and explicitly talked about how horrible it was for me that other women didn't support my decision, I got even more comments from women who argued that I had just not known my body well enough to have known what I was doing when I agreed to the hysterectomy.
And so it goes.
In November of 2005, I underwent a hysterectomy. I was 42, and I had suffered from a condition that weakened me. In the weeks leading up to the decision, I blogged about it. I needed to. I was frightened beyond measure that losing my uterus would somehow take away some essence of my femaleness. I was terrified that I would never know sexual pleasure again. I was especially scared because I had been told when I was younger that women who had hysterectomies did so because they were too sexual, and this was their punishment. It was a lot of crap to work through.
I’m combining two blog posts I wrote. The first was written just before my surgery. It goes like this:
Karen Novak, one of the most brilliant people I know, frequently says the kinds of things that wind up staying in my head, tucked away in some back room, and then, sometime later, re-emerges when that piece of wisdom crashes into some life experience I’m in the midst of.
In this case, we were talking about time. About whether it was possible that men and women had different conceptions of time. She argued that men see time as linear; women see time cyclically.
“We can’t help it,” she said. “Every month, we are reminded that we are part of a big cycle. We bleed. We stop bleeding. We ovulate. We bleed again.” Time gets broken up and its repetitive nature is literally written onto our bodies. Men, as far as I know, have no regular reminder that time is cyclical. I imagine that it moves forward for them.
Okay. I know that this reeks of essentialism, the kind of essentialism that makes me crazy. But, I also think there’s some validity to what she said. And while all women do not currently menstruate, or no longer menstruate, the cultural reminders of women as monthly, cyclical creatures is there all around us.
On November 18, I will no longer be among the women who bleed. I’ve alluded to health problems before in this forum. For reasons that may elude a lot of you, I want to talk about the fact that I’ve chosen to have a hysterectomy in just over three weeks.
And I use the word “choice” deliberately. My uterus is a sick organ. It is making me sick, to the point where I have been in the hospital recently, so anemic that I could barely stand. I’m experiencing chronic pain. Two weeks out of the month, I feel like an overripe kumquat—squishy and swollen—and, if kumquats had feelings, my guess is that being overripe would make them as cranky as I’ve been. Cranky, and sad, and angry as hell that I’m a hostage to my body.
And yet. It’s my uterus. The organ within which I carried three pregnancies and from which I delivered two healthy children. The organ that, every month since I was 13, has made its presence known. It’s not like my liver or my spleen or my heart. I mean, I know they’re there, doing their jobs, but it’s not like those organs send out an all-points bulletin to the rest of my body that special attention must be paid to it.
And my uterus is such a political organ. Our culture is engaged in an all-out war about what women may do with their uteri. Whether my uterus belongs to me, or as some would argue, it belongs to the government or my neighbor or anyone else who is anti-choice.
And, truth be told, hysterectomies get a lot of bad press. Once upon a time, doctors removed uteri like they took out tonsils—if you were done with it, what the hell did you need it for?
I admit. As women I’ve known have chosen to have hysterectomies in the face of health problems, the thoughts that have gone through my head have been uncharitable. They were downright arrogant. They went something like this: “You are a victim of the male medical establishment. If a man had a small problem with his prostate, would we advise castrating him?”
I really wanted to believe that most hysterectomies are unnecessary, that women have them because it’s more convenient to take out a uterus rather than work to fix a problem, that women’s reproductive organs are only valuable if they’re producing babies.
And then this happened to me. And so, I’ve avoided this surgery. I’ve tried alternative treatments. I’ve been determined that I should hold on to this part of me. And then, some other voice started speaking to me. The one that asked me questions like, “If this was your spleen causing you this many problems and pain, would you even be having this conversation? Wouldn’t you have gotten the damn thing taken out immediately?”
My uterus is not the essence of my being. I’m not a “womb-an.” I have a disease that is going to get progressively worse. Its symptoms can be treated—in my case, unsuccessfully—but its cause cannot be eradicated without removing the organ where the disease is.
And so, I’m making this choice. To be healthy. To make a decision in which I choose not to suffer any more.
So, that was the first blog post. I underwent surgery on November 18, 2005, and then spent about a week convalescing. I had lost a lot of blood during surgery, and I was weaker than I expected. I was also a bad patient.
A friend of mine, a nurse, who had offered to take care of me while I was laid up, got so tired of listening to me whine about how much I wanted to get out of the house and go to Target that, three days post-surgery, she took me to Target. Within five minutes in the store, I had passed out. She got to say “I told you so,” and I got to learn that my body is not superwoman’s.
We still laugh about this incident now. My stubbornness. Her exasperation. My being wheeled out of Target in a wheelchair.
I wrote my next blog post about the experience about six months later. I had kept to myself that right before my surgery, an anonymous e-mail had shown up in my inbox. A woman was furious with me, claimed that I was making it okay for women to subject themselves to mutilation, and that I would suffer dire consequences as a result.
I wanted to tell her that I had tried everything: an IUD, hormones, iron supplements, but the reality was that my uterus had become the focus of my existence, because on any given day, the amount of blood that pouring from it could affect even my ability to stand.
I remember when I got the letter, I showed it to my best friend. I also called my gynecologist, Heidi, whom I would trust with my life, and I had her read the letter. They were both angry on my behalf. And I was angry, too.
How dare this woman send me a letter bomb a few days before surgery that I was already terrified of having? How could another woman (calling herself a feminist) be so cruel?
Anyway, this is the blog post I wrote later, to show people that I had come through with flying colours.
Shortly before I underwent a hysterectomy in November, I received an anonymous letter via e-mail. I had not been shy about my need for surgery. I am more than aware that my uterus is a political organ. I fear that just as SCOTUS has recently ruled that there’s no need for a “knock-knock” before violating civil rights, so too, it will soon be permissible to enter a woman’s vagina without her consent. Or, as the case is more likely to be, to tell a woman that she can’t make decisions about what may or may not enter and lodge inside her uterus.
And so, knowing that the personal is political, to quote what was once a revolutionary statement but which seems to have lost its meaning, I chose to write about my decision, and my fear, in undergoing this procedure.
Thus, someone out in the blogosphere decided to send me a letter, under a pseudonym, in which they denounced my decision to be public about what I was about to undergo. In the letter, the person described to me how I’d been duped by the male medical establishment, how six months after my surgery I would begin to suffer the horrible effects of various blood vessels dying in my pelvic region, how I would feel like shit.
And worse, this person pointed out, I would be responsible for the positive push I may have given other women to have the same operation done. That by talking positively about my decision to have my uterus removed, I was contributing to the ruin of other women.
All of this vitriol arrived just a few days before my surgery.
And so, given that it is now over seven months since my operation, I feel that I should check in with the world, and let other women know what the effects have been of having my political organ removed.
I feel fantastic. The condition that necessitated surgery was adenomyosis, a condition in which I bled profusely throughout the month. It was unpredictable, and frequently, in the middle of sexual intercourse, I would start hemorrhaging. I have never been squeamish about sex during menses, and I’ve been fortunate that I’ve had partners who were also not turned off by blood. So, the blood was not the issue.
The issue was the constant pain, and the weakness caused by anemia. I felt sick all the time. My uterus was approximately the size of a 13-week pregnancy, and for someone who is tiny like me, it meant that my stomach bulged. Again, no big deal. But I felt permanently bloated.
We tried other therapies to alleviate the problem. They didn’t work, and in fact, made things worse. One night, after having hemorrhaged for the entire day, and now, too weak to stand, a friend took me to the emergency room. My gynecologist came in to see me, and we decided then that there was no point in putting off the surgery. It was time to overcome my fears and do what was best for me.
My biggest fear about hysterectomy was about sex. And so, I want to talk frankly about that here.
I was deathly afraid that I would no longer be able to have orgasms, or if I did have them, that they would be pale shadows of their former selves. For me, orgasms build, and when they reach their crescendo, I feel contractions deep inside of me–intense, starbursts of pleasure that I had always assumed was the result of my uterus responding to the electricity racing across my flesh. How would I experience that level of pleasure if there was no uterus to contract?
I was haunted by the idea that I would lose a sensation that is of paramount importance to me. Perhaps it makes me shallow, this desire to feast at the full banquet of sex. But I believe that there are few things that are freely available to us, and for me, sex–both the connection I feel to another human being and the loss of boundaries I experience during orgasm–is an integral part of who I am.
I was terrified of losing that.
After surgery, one is advised not to have intercourse for six weeks. For the first couple of weeks after surgery, I felt awful. I lost a lot of blood during the procedure, and my iron level was down to 27 (normal is 42). So, I wasn’t thinking a lot about sex. But, things started to wake up, and I decided to take matters into my own hands, so to speak.
When the orgasm came–complete with the deep sensations of contraction and vibration–I wept. I wept. I called my closest friends. I shared my joy. I felt no shame in doing so. And, when I was able to resume intercourse, it was to discover that everything still worked. In fact, it worked better, as I now did not feel this sluggish, clogged-up sensation in my pelvis.
And life without periods has been interesting. I don’t bleed, of course, but since I still have my tubes and my ovaries, I experience a normal cycle, complete with bloating, crankiness, and breast tenderness. Woohoo!
I realize that for many, this may be too much information. But I was open about having the procedure before I had it done, and I feel an obligation to let those who reached out to me prior to surgery know that I’m well. I’m fabulous.
It’s three years later. Sex is better than it has ever been before. Multiple orgasms. No periods. No cramps. No worry about getting pregnant.
I’m 45 now, and menopause is setting in. (Heidi told me that recently, when I was telling her about my mysterious hot and cold flashes. I had been pretending they were something else.)
I know that hysterectomy is not the choice for everyone. But I feel as if I need to de-mystify this operation that so many of us fear.
I still believe that there are some doctors out there who perform unnecessary hysterectomies. And Heidi took only what she needed to take out, so I still have my ovaries and my Fallopian tubes.
But I don’t feel any different than other women out there. My sexual desire level is high—but I expect that’s normal for being in my 40s. (It is true what they say: being in your 40s is awesome!) My lover and I take every opportunity that we can to touch and snuggle and caress, lick, penetrate and come.
In an odd sort of way, I feel as if my hysterectomy freed me to be even more sexual.
And I refuse to say that that’s a bad thing.
Lorraine Berry is a writer of fiction, non-fiction and articles for various trade magazines. She teaches creative writing and is grateful to live in gorgeous countryside, have two daughters whom she adores, and to love and be loved by a great man. Yes, she knows how lucky she is. She blogs here.