fingerlakeswanderer

fingerlakeswanderer
Birthday
May 09
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cassandra
Bio
Lorraine Berry lives in the Fingerlakes region of New York, although it's her transplanted home. On weekends, she can be heard throughout the area, cheering on her beloved Manchester City F.C. When not writing at Does This Make Sense? or Talking Writing, she can be found hiking with her two dogs, hanging out with her two daughters, eating what her beloved Rob has cooked for her, or teaching creative writing at a small college in the area.

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MARCH 19, 2009 9:50AM

Coming Out of the Closet: My Hysterectomy

Rate: 24 Flag

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 on Monday, 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.

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Sorry about the two posts in the same morning. I've kind of been on a writing jag this a.m. I'm going to stop now. But thanks for letting me share.
Thank you so much for your information. I had a hysterectomy 10 weeks ago. I already feel so much better than I did for the entire previous year. I was worried about sex too, at least partially because my husband is 7 years younger than me (38 to my 45) and so he is often, um, ardent.

But anyway, thanks for the post, I wish I had read it this time last year, I might not have waited and taken enough aleve to give myself an ulcer, if I had.
my god you're on fire
either that, Ben, or I'm desperately trying to avoid grading student papers. But yes, my head is full of stuff that can't wait to get on paper. Thanks.
And Regana, I wish that someone had told me the same thing. I put myself through a lot of agony before i had the operation. It was unneccesary. Thanks for validating what I've said.
I'm glad this turned out so well for you.

Everyone in my family and most of the older women I know had an early hysterectomy which set them into early menopause. I'm very resistant to the idea. It pisses me off that some day the same thing will happen to me and there appears to be nothing I can do about it. Why is it so inevitable that every women have to have a hysterectomy? Shouldn't there be some woman, somewhere, who didn't nearly die of anemia before having her uterus chopped out? I'm glad that hysterectomy is available, since it's clearly life saving, but disheartened at the low success rate of non-surgical alternatives.
Allie,
IT depends on what kind of hysterectomy they had. If their ovaries and tubes are removed as the same time as the uterus, then yes, it will send you into menopause. But there's absolutely no reason to take the ovaries if the problem is the uterus. So, you should find out what procedure they had done. I'm starting menopause about the same age as my mom, so that's not something that happened to me.

Another advantage is that I can never get uterine or cervical cancer.

I agree; it does seem that every woman has problems with her uterus at some point. But when you think of the statistic that one in five men will get prostate cancer, the problems with reproductive organs seems to be a common thing for both sexes, although as we are well aware, for the longest time the treatments for women were simply to "cut it off."
Not quite sure why many issues need to end in a polarization. Not sure why one person's choice for health reasons (or any other reason) is taken so personally by others. Are some hysterectomies unnecessary? Yes, but you did everything you could before you made this very important decision for your health and well being. By your well told story with retrospective, you obviously made the best decision. Rated.
Thanks for being on a writing jag this morning! You can write, girl.

Hystos are the elephant in the corner. Too many women believe that there are always alternatives when there are not always alternatives. These alternatives leave a person open to cancers, bowel damage and other deadly consequences of letting conditions get out of control.

Then, we are too eager to be defined by the presence of our uterii. You are still the wonderful, whole, and delightful person that you've always been. Just without the PMS, the screaming, and the disabling periods.

Congratulations on your bravery in bringing up this subject. Your post will go a long way toward injecting some facts into the globalized yakking, bad amateur medicine, and mythology.
Thank you for posting this. My wife is currently having to make a similar decision and I will share this essay with her.

She has pretty much made up her mind and in her case she is probably not going to have the surgery and wait to see if menopause solves her uterine problems. Her problems are not as severe as those you describe and she already had one procedure for them (endometrial ablasion) and the complications from that are the over riding factor in why she wants to avoid another surgery. Every body is different.
Thanks for sharing. This same operation is in my near future, and I feel so much better about it, reading this - I have many of the same fears/thoughts you expressed here.
Your passion is so evident in everything I read from you.
I want to make sure that anyone who is facing this, or has questions, should feel free to pm me. I'm happy to talk about my own experience, and can comment on having it done laproscopically (as I did) versus other methods. I have two tiny scars on my abdomen (one that's in my belly button), and that's it.
Oh, this ended better than I thought it was going to! Multiple orgasms, better sex.... Yee haw!

Freedom, Freedom!
FLW, I admire women like you who decide for themselves when enough is enough and aren't afraid of making the tough choices. A term that's long out of fashion applies: Moxie.

I also liked what you said about time. It's an insight into the male/female perspective I hadn't encountered, although I have to say I'm cyclically oriented myself and a longtime believer in the kharmic wheel (what goes around comes around).
oh, Good, you answered one question I had, whether it can be done effectively laparoscopically, and how bad, thus, would the healing process be. I may or may not be in line for a hystero, so am intensely curious about it. My mom had one when she was 29.

and sex? Well, I'm effectively negatively reinforced re that now, so hystero or no hystero is not really the issue.

Ooops! TMI, yet again.

Thanks for being so open and frank on a subject too often kept shrouded.
Healing time? It varies. You should be able to be up and doing things like going to the bathroom by yourself within a day or so, and then slowly, over the first week adding new activities. I was so weak from loss of blood that I had a hard time staying upright for about 5 days, but I was back at work within 2 weeks. I think I was hiking and doing other activities within a month. But the stitches are internal, so you don't have to deal with that either. I think I was on painkillers for about a week, maybe less.
P.S. the other thing you should know is that insurance companies try to treat this like "drive-through" surgery. I was supposed to be released w/in 24 hrs., but my doctor simply indicated I needed an additional 24 hours in the hospital. Had surgery on a Friday morning, was released Sunday.
Fucking insurance companies.
Thanks for this post, FLW.

It's a difficult diagnosis, because it can't be treated surgically in the same way fibroids can, but the symptoms are similar, and often more severe.

I was one of the lucky ones who was (finally) able to get by without the surgery, but reading your post, I'm thinking maybe I should have just done that anyway, because it still took quite some time to resolve... and the quality of life issues are pretty significant, just not the kind of info you want to share when you really need to sit down because you can't stand forever waiting for the train or in a line, or even at the stove making dinner.

As for the anemia for anyone in a similar situation... I recommend shellfish. Clams, oysters, for example, are much higher in iron even than beef. Of course, I would never say no to lamb. I don't eat them raw as a rule, but add a can of either (not smoked) to a bowl of hot soup.

Foods rich in vitamin K are also helpful at stopping bleeding. But not at re-building blood cells.
Thanks for this. It's an option I've been given and I felt like you originally did. So if eventually I have to make that decision, this makes it a little bit easier. rated.
I'm glad you feel better and your sex life is OK, but I could never have such an operation unless I was convinced by at least ten people that I would die without it.....and even then.....there are other options.....
Like you, I had a partial hysterectomy at age 42. It is no picnic I can testify. My own mother needed one at age 76, fully ten years after mine. It was wonderful for me to be in the position of informing her, for a change. It took me fully six weeks to recover, my mother...two!

Freed from the pain, the incredibly long periods etc., I too reveled in my sexuality, and my younger husband did too.

I'm sorry you got that stupid, ignorant email. Very glad it did not stop you from going through with it. (I had a female doctor also.)

Thanks for sharing this.
I'm kind of in the midst of a huge health/reproductive organs/WTF is going on? conversation with my doctor.

My poor, scarred uterus will probably be adding more scar tissue if I have to get scraped any more! (I got pregnant with an IUD. Everything about that sucked, including the abortions involved.And then having the stupid thing removed, after it had "migrated'. The IUD, that is.)

Now I'm in some sort of weirdly early menopause - And am taking hormones to induce a vague menstruation; a shedding of the built up uterine lining. Fibroids are not my friends.
I feel like I live every day as the day before getting my period. Cramps beyond belief. And nothing happens.
I'm pretty sure a lot of this has to do with taking Depo Provera after the ectopic pregnancy due to the IUD. I got pregnant at the drop of a hat, at that time. Cervical cap, Iud, pill? Pregnant, pregnant pregnant. So Depo was the only option left. That or motherhood, which I was conciously trying to avoid.
I'm now sort of feeling like "Take it away! I don't need it!", but maybe I'm over simplifying things.
My breasts are rebelling on me too - I had a lumpectomy one year ago (almost exactly to the date!)

Sorry, I'm blogging on your blog! But I feel like some things that are discussed here on OS - like this post - provide so much info that so many of us are looking for! Just hearing from other women and sharing their experiences makes me feel so much better!

Hopefully you, and other commenters, feel the same about sharing all this information.
aim,
i had a friend who had similar problems with pregnancy: at one point, she was taking the Pill and had an IUD and still got pregnant.

I don't know what to tell you to do. i wouldn't presume to act as your doctor. But, if your doctor recommends hysterectomy, I can't tell you to do it--but I can tell you that it turned my life around. I can't imagine what my life would be like now if I was still losing two weeks out of every month to bleeding so bad I couldn't be away from fresh supplies for more than 1-2 hours.
Thanks fingerlakes.
You are really genuine and nice.
My doctor isn't recommending a hysterectomy at this point - but I'll be damned if I go another year feeling this way!
My first wife had this surgery at age 27. It may have saved her life but she did have some times of regret and wondered if she had been punished somehow. This is a tough one and I was only a bit player in this scene. I can only imagine the various thoughts that a woman has to work through and I am disgusted by the person who felt the need to share such nastiness with you. I am glad that things worked out for you....
Great post, Fingerlakes. I'm still pretty young at 24 and my uterus seems to be fairly healthy for the moment, aside from the usual monthly reminder of its presence. But I've had the same sorts of fears about a possible hysterectomy in my future, and your experience has eased those. Thanks for sharing.
I had a lot of the same symptoms that you did. I lost so much blood that I ended up in the ER with a blood count so low that the ER doctor was afraid I would have a stroke. And yet, everyone I knew kept telling me I had to find "alternatives" to a hysterectomy. In my case, it turned out to be Stage 3 uterine cancer (at age 38), so I didn't have a choice. But I was amazed at how many people seemed to think I had failed somehow, because I had a hysterectomy.

Surgery is always serious and shouldn't be taken lightly, but my quality of life is so much better since having a hysterectomy. I didn't realize how bad I'd felt for so many years, with all the bleeding problems I was having. I went to one gynecologist after another, and nothing worked - and I was told to just "live with it". Now, I feel so much freer - I can go to a movie any day of the month without having to get up every hour to change my triple layer of pads! I can go out without having to map out every bathroom in case I need to change my tampon! I don't have to keep a change of clothes at work because of blood stains! It's like being freed from an enormous weight.
Karen,
Thank you for your comment. I'm not sure why we (and I include my former self in this) are so judgmental about hysterectomies. Yes. They were abused and a lot of women had them when they didn't need to. But deciding that no one needs a hysterectomy is ridiculous. I suffered, too, and I wish that I had gone with the option earlier, instead of using it as the last, possible option.

I am glad that you are free of the cancer, and that your life has been freed up. As I said before, if my doctor had told me that my gall bladder or my spleen was making me miserable, I'd of have that sucker out in a minute, but having a hysterectomy just seemed so wrong.
I think until some women have been in these shoes, they don't know how it feels and how getting rid of a diseased organ can make you feel like your life is worth living again.
FLW, I cannot say that I have experienced anything of what you've gone through with your uterus, but I can say that most all of us have had to face some life-altering tough choice like yours. You write about your experience with grace, with dignity, and with hope for all women who may have to face a similar procedure. Thank you for your frank honesty and your beautiful writing.
I am glad that you took control and did what was best for you without listening to all the harpies who always know what is best for us but can't find their own rear ends with both hands.

And, yes ;-), this was far more information than I ever wanted to know, but, hey I come from a different generation.

Good post. Good on you for your decision making.

Monte
awesome! you are certainly not a womb-an....enjoy the multiples!
You are woman and I love your roar! Beautifully expressed and tenderly shared. Here's to your continued satisfaction.
Thank you for this post - very honest to spell all this out.
I think hysterectomies scare the shit out of women, as well they should, and your coming clean is a blessing and a gift. God bless you for doing so in such clean, honest, beautiful prose. And screw anyone who damns you for doing so. You made a decision that was right for you and your body and it sounds like a good and intelligent one. Wow, people can be cruel, but then you, as a brilliant woman always knew that. Thank you so much for writing about this and helping the rest of us out with your honesty and information. We need women like you!!!!!