An Open Letter to the HERS Foundation on the Anniversary of my Hysterectomy

Dear HERS Foundation:

A little over a year ago today I spent my nights nursing my newborn to sleep then surfing the internet for information about my pending hysterectomy. I had been diagnosed with cervical cancer and while the carcinoma was microscopic, in situ, and promptly removed, my doctor urged me to complete my young family as soon as I could and then to have a hysterectomy. I was pregnant within a week or two, and so found myself a year later with three small children, two of them under two years of age, still reeling from the health scare, and absolutely overwhelmed by the prospect of a major gynaecological surgery that would leave me unable to care for my babies on my own for more than a month. 

We sought several opinions from several sources -- other doctors, books, and the internet -- and I made a profound effort to arm and empower myself with as much information as I could.

That's what I`m like.

I research.

I read.

I ask questions.

I do not take medical interventions lightly. I think wholistically. I prefer natural solutions to surgical or pharmaceutical ones. I'm skeptical of the modern medical system's commitment to women's overall well-being. These are the same reasons I chose midwife attended waterbirths for my three babies. 

But I didn`t find a single source that advised anything but a hysterectomy for cervical cancer. It was obviously the right decision. Early detection and surgery almost certainly saved my life.

It has been one year since my hysterectomy and this post is for any soul out there who is about to undergo a medically necessary removal of their uterus and is wondering the following things:

Will I be less of a woman after I have a hysterectomy?

Will I be ugly after a hysterectomy?

Will I never want to have sex again after a hysterectomy?

Will I still be able to orgasm after a hysterectomy?

Will I be a husk of my former self after a hysterectomy?

Why might a woman be convinced of these things? Because the activist(s?) at the HERS foundation have spent a tremendous amount of energy spewing vitriol all over the world wide web so that women like me, who read and research on the internet, expect these consequences and worse. Their objective, besides selling books and DVDS, is to make sure women are terrified of having hysterectomies for any reason. According to HERS I would wake from aenesthesia an unrecognizable shadow of my former self, castrated, stripped of my sexuality and my ability to ever enjoy sex again. Not only that, but HERS adds for good measure, I will probably be startled to find that I love my children less because my body, without a uterus, will be unable to produce the hormones needed for "maternal feelings."

These are the things that had me crying on my pillow night after night leading up to the removal of my uterus. I was terrified. Like, sobbing into my pillow so the baby wouldn't be woken by my wailing kind of terrified. Though now that I've been through the surgery and the recovery the dire warnings of the HERS foundation seem almost laughable. Almost. They caused me so much anxiety.

Now, HERS foundation, I'm asking you nicely, please stop being such an asshole on the internet.

It's not that I have any doubt that hysterectomies are over-utilized in Western medicine and it's not that I don't think activism and education about this subject aren't valuable. I respect your mandate of educating women about our bodies and our medical options.

It's your methods that really piss me off.

I certainly believe that women should research any major medical procedure to the best of their abilities prior to consenting to it. Learning about our options is our right and our responsibility. But the HERS foundation, under a supposed mandate of "educating" women is actually hindering our access to medically relevant information by spreading so much misinformation and crap.

HERS claims, for example, that a women without a uterus can't manufacture oxytocin, the love hormone responsible for maternal bonding. They are wrong. Oxytocin is produced by the hypothalmus. If one needed a uterus to manufacture it, men wouldn't have any in their bodies, but they do. This is just one example in a long list of crimes against science the HERS foundation has perpetrated in their "informational" materials.

These "facts" and this awful video by the HERS foundation insists that without a uteurus a women's torso will slump and balloon, her vagina will probably turn inside out and hang down her leg, and she will almost certainly gain thirty pounds while she ponders suicide and leaks feces.

I'm not recommending a hysterectomy to anyone who doesn't certainly need one -- it's no cake walk, Baby. If I could be whole again, I would be. But I'd rather be alive. And a hysterectomy did not make me ugly. It did not make me less of a woman -- I am still 100% woman. It did not destroy my sex life or my ability to orgasm, it did not make me love myself or my children less. I can still run 5K (without, I might add, leaking feces), I can still breastfeed (without, I might add, pondering suicide), and while I don't at all keep up with the housework, I really can't blame the surgery.

There is quite a bit of calm, neutral and sometimes reassuring information out there for women researching hysterectomies. But HERS-formation oozes through the cracks on message boards, on blog comment sections, and on wikis. There were warnings from so many people who said a hysterectomy ruined their sex drive, their life, or their wife.

"My wife was a beautiful, vibrant sexy woman before her surgery. Now she's a withered shadow, an empty husk of the person she once was. I would do anything to go back in time and stop the surgery. I would do anything to have my beautiful wife back."

I started to notice odd similarities though -- not just in the experience being described but in the unusual and repetitive turns of phrase, such as "empty husk" that these apparently diverse sources would use to talk about their experience. Then I started noticing crazy turns of phrase, like "you should kiss the ground the HERS foundation walks on." It eventually became apparent that many of the users on, for example, this Health Board for hysterectomy discussion (Mollyfox, Elaine333 and Triple777) are most likely the same person.

The talk page at the back-end of the Wikipedia article on hysterectomy shows a long, persistent struggle between persons trying to keep the page factual and neutral and someone who keeps changing the text to make it scary and confusing. This person would add, for example, the phrase "female castration" whenever possible and contribute all manner of tangents.

"It reads like an anti-hysterectomy manifesto," one Wikipedia contributor noted.

"This article seems to have a very serious POV problem," noted another. "It looks like its been "got at" by an activist of some sort."

Indeed.


Please stop being such an asshole on the internet.

Telling women to never trust a doctor who suggests a hysterectomy for any reason whatsoever is not helpful.

It saddens me to think about the number of women who die every day because they don't have access to hysterecomies. Cervical cancer is a huge killer of women in the third world. It's a shame. If there's just one woman who did have access to a hysterectomy but chose not to because she was terrified by what you posted at www.hersfoundation.com or www.hysterectomyconsequences.com/ and died because of it, then shame on you. That's on you.

Terrorizing women who are about to have a hysterectomy and turn to the internet for information and or consolation is not noble. Whatever ordeal they are going through is probably scary enough without your help.

Why don't you go harass women who have breast cancer or appendicitis for a while? Tell them how they'll love their children less and probably want to kill themselves after their surgery.

Consider anti-caesarean advocacy. I definately fall into the camp that would like to see the c-section rate lowered in North America. I rally for more awareness of the cost of surgical birth to mother's and to their babies well-being. And I applaud some of the really wonderful VBAC and cesearan awareness advocates out there. What they do is tell women that their birth experiences, their bodies, and the way they feel about their bodies and their births matter. What they don't do is insinuate "facts" all over the internet such as "women who have c-sections will never be able to enjoy orgasms again", "women who have had c-sections are less because of it" or "c-sections are unnatural and leave women horribly disfigured."

You empower women by giving them facts, not by flooding them with fear.

Your advocacy has crossed the line from helping women to harming women.


You have personally caused me a lot of very real pshycological harm and pain.

Please reconsider your mandate. Do you want to make money selling books? Do you want to terrorize women who are undergoing a painful transition in their lives? Or do you want to empower women? I hope you choose to work towards the latter. To do so, revisit your tactics. And please stop being such an asshole on the internet.

Sincerely,

Betsy