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The Ethics of Female Castration: Hysterectomy Plus Ovariectomy

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Over half a million hysterectomies are performed each year in the United States. Approximately 60% – 74% of those hysterectomies include removal of the ovaries or ‘castration’. Castration (also referred to as gelding, neutering, fixing, orchiectomy and oophorectomy) is any action, surgical, chemical, or otherwise, by which a male loses the functions of the testicles or a female loses the functions of the ovaries.So there you have it – ugly as it may be. The correct medical term for removal of women’s ovaries is ‘castration’.

Most women do not know that when they agree to removal of their ovaries that they are agreeing to castration. They don’t know because the term castration is never used. They are told they will be undergoing some far-and-away sounding thing called ‘oophorectomy’. Women falsely believe they don’t need their ovaries because their doctors tell them they don’t. Women are purposely led to believe that their ovaries stop producing hormones once they’ve entered menopause anyway. They’re also assured that hormone replacement therapy can replace their own natural hormones. The truth is that there is no artificial hormone of any kind that can replace a woman’s own natural hormones. A woman’s ovaries continue to produce hormones all of her life. There is never a time when a woman doesn’t need her ovaries or the life-sustaining hormones they produce. No woman can give informed consent to ovary removal when she doesn’t understand that she is agreeing to castration. Far too many women are misinformed, uninformed or not informed.

And, it’s not just that women aren’t informed that oophorectomy is castration or that women agree to ovary removal in the first place. I hear from women all the time who tell me that they did not consent to removal of their ovaries, only to wake up from surgery with them missing. It seems doctors routinely take it upon themselves to remove healthy ovaries when they perform hysterectomies for benign diseases. They say it prevents the possibility of ovarian cancer. It should be noted however that the risk of ovarian cancer in women who have no family history of the disease is less than 1%. Meanwhile, removing the ovaries greatly increases the risk of cardiovascular disease (the #1 killer of American women) and accelerates osteoporosis. Removal of ovaries is linked to a variety of diseases and cancers, not to mention mental impairment and sexual dysfunction.

My healthy ovaries were removed without my consent during a routine hysterectomy in 2007 which I’ve previously discussed via my post “Wide Awake: A Hysterectomy Story.” My life has been altered in ways I never knew or understood was even possible. I suppose it’s true that we don’t know what we’ve got until it’s gone. Our ovaries are such a vital part of who we are as women. Yet, it’s not always possible to know this until we are forced to live without them. Ovary removal is not reversible. The devastating consequences last forever. It’s unnecessary trauma at best and forced castration at worst.

Forced castration is considered to be immoral and barbaric according to every country in the world other than Germany and the Czech Republic. More specifically, it’s considered to be immoral and barbaric to surgically castrate convicted sex offenders. Nearly one hundred men have been surgically castrated in the Czech Republic over the past decade. All 94 men had one thing in common: they were sex offenders being punished for heinous crimes. This practice garnered some unwanted attention when the Council of Europe, a leading human rights organization, published a report calling the practice “degrading, invasive, irreversible and mutilating.” Interestingly, the Council of Europe also stated that “even a minor interference with the physical integrity of an individual must be regarded as an interference with the right to respect for private life.”

Indeed, the South Carolina Supreme Court held in State v Brown (1985) that surgical castration is a form of mutilation and therefore considered to be cruel and unusual punishment and illegal under the 8th amendment of the U.S. Constitution. David Fathi, Director of Human Rights Watch’s U.S. program in Washington D.C., contends that surgical castration is “an irreversible punishment and is a fundamental violation of human rights.” Further, he says “Any kind of mutilation is barbaric.” American Bioethicist Arthur Caplan declares “While prisoners are excluded from moral life losing the right to vote, Americans have not reduced them to non-human status.”

If castration of less than a hundred sex offenders is an alarming violation of human rights, what conclusion should we draw from the fact that nearly half a million women are castrated every year in the United States alone. Is it somehow acceptable to reduce women to a non-human status? If it’s considered morally wrong to surgically castrate rapists and child molesters, then why is there no outcry about the castration of millions of innocent women? We simply must begin asking these profoundly important questions.

Quite literally, thousands of women are surgically castrated every single day in hospitals across this country. That works out to be approximately 9 women every 10 minutes. Keep in mind that these women have committed no crime. Innocent and unsuspecting women agree to hysterectomy and wake up castrated. Where exactly is the outrage? What about cruel and unusual punishment being illegal? Does it somehow not apply to women? What about a woman’s right not to be mutilated? Let’s be honest here. If this were happening to men, there would be mutiny in the streets.

It is past time for us to begin talking about the issue of female castration. The ovaries are ‘essential’ parts of a woman’s body. They are part of the fabric of life and so they are integral to the reproductive powers of the body itself. Female castration is simply not ethical in most instances.

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My Websites and Social Media

Website: Hysterectomy Consequences

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A petition to stop unnecessary hysterectomy can be found on the Hormones MatterTM Sign a Petition page: Help Stop Unnecessary Hysterectomy and Castration

Post Script: This article was previously published with the incorrect title: The Ethics of Total Hysterectomy – Female Castration. It is the removal of the ovaries, often with hysterectomy that we contend should be considered female castration. Total hysterectomy does not include the removal of the ovaries. We apologize for the confusion.

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Post Hysterectomy Skeletal and Anatomical Changes

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I wonder if so many women would “choose” hysterectomy if they knew how it would affect their figure and internal anatomy. I know I would have told my once respected gynecologist “no way” and left never to return if I’d known just a smidgen of what I now know. Here are some of the anatomical and skeletal changes that occur post hysterectomy.

Ligament and Skeletal Changes Post Hysterectomy

An intact woman’s figure has space between the rib cage and the hip bones commonly known as the waist. The waist gives her the curve in her lower back, the natural sway in her hips, her “elongated” torso that’s proportionate to her extremities. This all changes after hysterectomy.

Four sets of ligaments hold the uterus in place. These ligaments are the “scaffolding” or support structures for the core (midsection). When the ligaments are severed to remove the uterus, the spine compresses causing the rib cage to gradually fall toward the hip bones and the hip bones to widen. This causes a shortened, thickened midsection, protruding belly, and loss of the curve in the lower back, giving the appearance of a flat derriere. In some women, these changes cause those hated rolls of fat (weight gain or not). In others, it looks more like a pregnant belly. This can be particularly distressing for women whose hysterectomies denied them the chance to have (more) children.

As if an unattractive figure isn’t devastating enough, these skeletal changes lead to chronic back, hip, and rib cage pain as well as tingling and loss of sensation in legs and feet. It also explains why, even absent osteoporosis, hysterectomized women lose height. With all these changes to the skeletal structure, I wonder if hysterectomy can also cause spinal stenosis. It would certainly seem plausible.

Evidence of my spine compressing started 12 to 18 months post-op. A crease started forming about two inches above my navel. It gradually lengthened over the next 6 months to a year until it became visible all across my midsection. I’ve always been thin (underweight) with flat, toned abs and prominent hip bones. And contrary to what most women experience after hysterectomy, I lost weight. As my spine compressed, my flat abs became “fat” and flabby. My hip bones became less prominent in the front (as my belly pooched out) and more prominent in the back since my rib cage had fallen onto my hip bones. And I now have intermittent back, hip, and rib cage pain as well as tingling in feet. My sacrum / tailbone has also looked bruised since not long after my hysterectomy.

Internal Organs Post Hysterectomy

And how does the body change on the inside? Well for one, it affects the bladder and bowel. The uterus separates the bladder and bowel and holds them in their rightful positions. Removal of the uterus causes these organs to fall impeding function. When the bladder or bowel is full, there can be a feeling of discomfort or even outright pain (exactly what I’m feeling at this moment – constant pain that increases by just walking). Complete emptying can be problematic as can incontinence. Bowels may alternate between constipation and diarrhea. Adhesions can further hamper bowel function even to the point of a life threatening obstruction. I’ve had serious bowel problems ever since my surgery 7 years ago. Chances of bladder, bowel, and vaginal prolapse and fistula also increase leading to more loss of quality of life and future risky surgeries. Hysterectomy has even been shown to increase risk of renal cell (kidney) cancer likely caused by damage to ureters. I have to wonder if functions of other organs may also be affected as our organs don’t work in isolation and may be further affected by the anatomical changes.

Nerves and Sex Post Hysterectomy

And what about sensation after all those nerves and blood vessels are severed? What’s it like having a shortened vagina that’s not connected to anything? Well, it’s no wonder sex isn’t the same! How can it be? And if you enjoyed uterine orgasms, those are obviously a pleasure of the past. Even nipple sensation can be lost because nerve endings are found all along the spine. The severing of nerves as well as scar tissue formation can cause a problem worse than loss of sensation – nerve entrapment which can be quite painful.

I’m not sure which is worse – the hormonal adverse effects or the anatomical and skeletal adverse effects. There’s no doubt though that my body has been drastically altered since the unwarranted removal of my vital female organs.

The adverse effects to a woman’s figure, as well as the many other adverse effects of female organ removal, are detailed in the video “Female Anatomy: the Functions of the Female Organs.” Priceless!

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Breaking Sexual Taboos

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When discussing my writing and research amongst a group of peers recently, I was struck by how quickly the conversation devolved into the more apparently, though not really, salacious articles I have written as of late. Yes, they were about sex and often cursorily about penis size. Mostly though, the articles used the phrase penis size as a vehicle to introduce bad research or media on medically-related topics. Of course, the added benefit of using one of the most popular search phrases on the internet was not lost on me and I used it to my advantage.

In these articles, I pondered our notions about sex and language; sometimes in jest, sometimes in all seriousness, but in each case, it was not the topic of the article that was most intriguing to those in this conversation, it was the blatant use of the taboo words penis size that merited the school-aged giggles from otherwise hyper-educated adults. And so it is, that I have begun to be introduced to folks, not by the serious research and commentary that I do, but by the posts on penises and sex. Yes, mom, I got a PhD to talk about penis size.

The interesting thing is, I know relatively nothing about penis size and frankly, I am learning that few of us do. The subject is taboo and like much of sexual health, riddled more with myth and misunderstanding than actual data. Do women (or men) prefer larger penises or is that merely one component of a complicated sexual dance? Are there racial or geographic differences is size, as myth proclaims or do the larger or smaller among us average out when large data sets are analyzed? Are there data sets about the size to pleasure ratio or is that just too taboo to even consider? Is this something a legitimate researcher should even consider considering (how’s that for a bit of deconstructive thought – thinking about thinking) or does the mere fact I am discussing this topic publicly, obliterate any hope of being taken seriously for my other research? Social mores what they are, it’s probably the latter. That is unfortunate and this is why.

The taboos that define what we can say, see or even know about sex or sexual health seep into every aspect of medical research and certainly political thought. In men’s health, think about circumcision for a moment. How might we approach that differently, if parents were given accurate information about male anatomy – that yes, in fact there are nerve endings that reach all the way to the tip of the penis and that yes, infants do feel pain. Might we not be so ready to lop things off for some biblical, pre-sanitation view of reality? Perhaps, but because we can’t talk about these things openly, we are left with myth to make medical decisions. Grown men know more about the anatomy and physiology of the heart muscle than they do of their own penis. Talk about driving blind.

In women’s health, it’s even worse. The powers of the magical vagina are so strong that even saying the V word can get men or women fired from jobs. Just recently, a high school health teacher was fired for teaching female anatomy and daring to ascribe the proper terminology to the female reproductive organs. In the overly litigious and ridiculously tabooed work environment, I suspect even using the word vagina in polite company might yield claims of sexual harassment (oh, our sensitive ears). And don’t even think about showing pictures of the female pelvic anatomy – that would be porn.

Even common medical imagery of the female sexual anatomy is often neutered with Barbie parts. Really, it is.

This is something that I recently and quite accidentally discovered; medical and scientific renderings of the female pelvic anatomy are not always complete (I suspect similarly incomplete imagery for male anatomy but have yet to investigate). Nerves, blood vessels, and the like, end well before reaching the magical, mystery areas of the female labia and clitoris. Indeed, in many illustrations those regions do not exist but are replaced by neutered Barbie parts. Keep the magic and mystery alive. Who knows what would happen if we were to show those sacred anatomical features. Oh no, women might realize there are nerves down there. Worse yet, physicians might recognize that there are nerves and begin understanding that the ‘psychogenic’ sex pain could be nerve compression. Gads, we’d lose the multi-billion dollar antidepressant industry.

If we can’t have adult conversations about sex or sexual anatomy or accurately portray visual images of human sexual organs without risk of repercussion, how in the world are we to treat diseases that affect said organs? A more fundamental question – would we have more fun if the tools of the trade were more thoroughly understood and appreciated? Perhaps.

Some interesting sites with complete pelvic anatomy and information about male and female nerve damage:

Learn pelvic anatomy. Break the taboos.

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Unnecessary Hysterectomy

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I became a “sitting duck” for the hysterectomy industry after experiencing a day of unremitting abdominal pain. Having never experienced female problems before, this had me concerned. So off I went to my gynecologist, a man I’d respected for 20 years, the man who’d treated me for infertility and saved me from another c-section by doing VBAC (Vaginal Birth After C-section). So the stage was set.

An ultrasound showed a large, complex ovarian cyst. My gynecologist said that “everything must be removed” and scheduled surgery. Of course, I was in shock and didn’t even know what to ask. He referred me to an oncologist for consultation who said he couldn’t tell if it was cancer and then quickly disappeared giving me no chance to ask questions. I went back to my gynecologist with a list of questions asking why I needed other organs removed. Unbeknownst to me, I was lied to about my condition (as later discovered from my medical records).

Although my barely audible inner voice told me something wasn’t right, I dismissed it telling myself that I had a good, reputable doctor who wouldn’t needlessly remove organs. I also convinced myself that a surgery that’s so common can’t possibly be all that bad. And ovarian cancer is often deadly. I mistakenly listened to family and friends who urged me not to delay surgery.

Fast forward to the day of surgery: There were residents surrounding my bed in pre-op. I didn’t recall this ever being mentioned or on any of the “consent” forms. I didn’t even know it was (is) a teaching hospital because it’s not affiliated with any university.

The surgical recovery was easy for me. However, it became clear very quickly that I had become a different  person. I felt like my HEART and SOUL were removed in that operating room. Despite being prescribed estrogen, everything fell apart. I quickly spiraled into a suicidal depression, couldn’t sleep more than two or three hours at a time, with a lengthy list of symptoms of hormonal deficiency and endocrine havoc. I also developed rather severe diarrhea. By 4 months post-op, I’d aged about 15 years from massive hair, skin collagen, and muscle mass loss. Yet a call to my gynecologist/surgeon resulted in being told “we’ve never heard of those problems before” followed by the phone being hung up. He’d now abandoned me as his patient.

I could barely function and was holding onto my job by the skin of my teeth. I became a recluse going to great lengths to avoid running into people. And when I did, I could see the shock on their faces.  Thankfully, my husband took on the household and minimal child care duties (my children were older) but I missed out on years of my children’s lives. Once I finally found a doctor who would “dole out” more estrogen, I could at least do basic daily functions. But the taken-for-granted, joy-filled days from when I was intact seem to be gone forever. I don’t even have the strong feelings of love for my family any more. Seven years after that fateful day, I still mourn the many losses caused by the removal of the organs that were so essential to every aspect of my being, the ones that made me female in every sense of the word.

What I found in my medical records and through research was eye-opening. All my female organs were removed to help gynecology residents meet their surgical requirements. Sadly, Graduate Medical Education (GME) accreditation requirements emphasize hysterectomy to the exclusion of organ-sparing procedures. And the hospital’s GME website stated that hysterectomies are the “bread and butter” of gynecological training.

I wonder how much my gynecologist was paid to train these residents? My records from the oncologist show that he enabled my gynecologist. I also question what was submitted to my insurance company for them to authorize “hysterectomy” because there was absolutely NOTHING wrong with my uterus (or my other ovary). Based on all my research and the experiences of scores of other women, if one female organ is being removed, it’s acceptable to remove them all. Insurance authorization and hospital consent forms are designed to allow this. This doesn’t make sense. I wonder if prostatectomy consent forms allow removal of testicles?

The hormonal effects of ovary removal are far more understood and acknowledged. But the anatomical and skeletal effects, not so much. So my next article will talk about these changes.

 

Hormones MatterTM is conducting research about hysterectomy. If you have had hysterectomy, please take a few minutes to complete this important survey. Then share the survey link with all of your friends. These data could save the life of another women. The Hysterectomy Survey.

To learn more about our research, click Take a Health Survey and sign up for our newsletter for updates on the latest research and new surveys.

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Gynecologists, What’s Your Problem With Our Ovaries?

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The New York Times recently reported that only 37% of women receive proper treatment for ovarian cancer, mostly because gynecologists do not follow guidelines set out by ACOG (American Congress of Obstetricians and Gynecologists) and the NCCN (National Comprehensive Cancer Network). This information was taken from a study led by Dr. Robert E. Bristow, director of gynecologic oncology at the University of California, Irvine. Sadly, the study revealed that most women with ovarian cancer or a suspicion of ovarian cancer are simply not being directed to surgeons who specialize in treating cancer and specifically, gynecologic cancers.

According to Dr. Bristow, just making sure women get to the people who are trained to take care of them would improve the odds in the fight against ovarian cancer than any new chemotherapy drug or biological agent. Even ACOG agrees that women with pelvic masses indicating a high suspicion for ovarian cancer should be managed by physicians with the training and experience that offers the best chance for a successful outcome. Generally speaking, OBGYN’s lack this type of experience because ovarian cancer is so rare. Shockingly, more than 80% of the women in the study were treated by what the researchers call ‘low volume providers’ – surgeons with 10 or fewer cases a year and hospitals with 20 or fewer.

This story really hit a nerve with me for many reasons, but mainly because the guidelines are being ignored. Most women do not know that they need to be referred to a gynecologist specializing in oncology and it appears most docs are none to keen to tell them. These aren’t the only guidelines gynecologists ignore, by the way. When one considers that only 30% of OB/Gyn clinical practice guidelines have actual evidence behind them, it makes me wonder what the heck is going on with women’s healthcare today.

When I read that only 37% of women with ovarian cancer were receiving the proper care, I immediately thought of how I was subjected to improper clinical care. You can read my full history here.

Briefly, my healthy ovaries were removed during a routine hysterectomy, placing me at a much greater risk for heart disease. The removal of my ovaries and in fact the hysterectomy itself, was against clinical guidelines.

Women with ovarian cancer rarely receive proper treatment while women with no cancer often receive radical over-treatment.

Houston, we have a problem! When it comes to women’s ovaries, gynecologists too often just can’t get it right. Or maybe they just don’t want to… Of the 600,000 hysterectomies performed each year, 73% are estimated to involve ovary removal. Since 90% of all hysterectomies are considered to be medically unnecessary in the first place, this is a huge problem. Even more disturbing is the fact that less than 1% of women whose healthy ovaries are removed have a family history of ovarian cancer. One has to ask why gynecologists are routinely removing healthy ovaries from so many women – especially given the many serious health risks.

There are guidelines in place regarding the indication for hysterectomy and ovary removal. Yet, those guidelines are not followed. A whopping 76% of hysterectomies do not meet ACOG’s own criteria. The most common reasons hysterectomies don’t meet criteria and are considered to be inappropriate are lack of adequate diagnostic evaluation and failure to try alternative treatments before hysterectomy.

Gynecologists routinely rush women into surgery without trying other options first, including doing nothing other than ‘watch and wait’ in some cases. Clearly, women aren’t receiving proper care all the way around regarding ovarian cancer nor are they being properly informed about the alternatives to hysterectomy. Whether we’re talking about birth control, HRT, ovarian cancer or hysterectomy, it pays for women to become educated about their health and their healthcare options. It may save their life.

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Angela’s Endometriosis Post Operative Update

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It has been two weeks since my endometriosis surgery and I feel better mentally, physically and emotionally. The surgeon was supposed to remove my left ovary and both tubes and a possible hysterectomy if there were complications. Remember, in my last post I begged for a hysterectomy to stop the pain. She didn’t do the hysterectomy, remove the ovary or tubes. Here is what happened.

 

In Post Op

When I woke up, I was curious as to what they found. I wanted to know if the hormone pills worked for the last seven years; if they had kept my endometriosis at bay. I also wanted to know if there was a bowel obstruction because then I wouldn’t feel crazy. I was doing enemas three times a week for the last three years because I couldn’t go. I wanted to know if there were adhesions on my bladder and ureters as I was having serious issues in that department including peeing myself because I had no sensation to go. I pretty much knew that bowel was stuck to my ovary on the left side and the ovary was also stuck to the uterus causing sex to be so painful.

There were complications. I didn’t have the hysterectomy as intended. The doctor didn’t take my tubes or left ovary. My right ovary was embedded into the pelvic floor which she did not detach as she told me it was “really, really, really stuck”.  I had a lot of adhesions which were causing the bowel obstruction just like I suspected. I also had adhesions on both my ureters and bladder. My left ovary was stuck to uterus and bowels and the uterus was stuck to the colon. That was set free. She found only superficial endometriosis. This means that either all the injections and various pills I had been taking all this time somehow worked or it was the adhesions from the previous surgeries that were causing all of the pain.

As I lay in post op, as I have before many times, I asked the surgeon’s assistant for the details of my surgery; what to expect over the next couple of weeks. The surgeon was too busy to bother.  Her assistant wasn’t very helpful either. I thought about all the women that have surgery for endometriosis and how helpless they feel afterwards. The doctors really don’t tell the patient anything – mine didn’t. (I’ll be posting an article about doctor etiquette next week). So I asked “Do I keep taking the pill continuously?”, “Why wasn’t the ovary detached?” Why was nothing taken as we discussed?”  I learned nothing. Even with the phone call to the surgeon a week later. I guess I have to wait until our follow up appointment on April 15.

Recovery

Right now my bowels have been somewhat great. I am going every day or every other day. It did take a while after surgery. That made me nervous, but I seem to be doing okay now. I have random bowel pains but I suppose that could be the healing process.

With my bladder there was a 60% change. I am no longer peeing myself. I no longer have the urethral pain I was having or spasms and I am not nearly going as much as I was prior to surgery. However I am still going at least 15-20 times a day not 40+. I am still happy with this.  It was really controlling my life and I couldn’t go anywhere. It was frustrating. Now at least it’s a little better.

I still have to wait to have sex so I am not sure how that is going to feel and in a way I am anticipating it. I am also nervous and scared that it won’t change a thing.

The healing process itself was very quick. My first surgery was extensive with deep pelvic floor dissection and had some complications with my bladder, but this time I was good. I could pee right away which was a great sign. The pain was not nearly intense as the last time. I was pretty much ready to go back to work in three days, whereas last time I wasn’t even okay after two weeks.

All in all, my recovery is going well. I am anxious to learn what the doctor found and what my prognosis is. I will keep you posted.

 

 

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Wide Awake: A Hysterectomy Story

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I’ve always considered myself to be someone who takes charge of her life and health. After all, we only get one body, one heart, one set of eyes, one uterus, one pair of ovaries and so on. I never smoked and always exercised. I went in for my yearly pap smears. I never took my good health for granted.

However, as it turns out, I had no idea how my body functioned or how I remained healthy. Not really. I didn’t understand how my female organs and hormones contributed to who I was. That is, I didn’t understand until my life fell completely apart after hysterectomy and ovary removal five years ago. Now, I’m wide awake.

On September 27, 2007, I woke up in recovery after undergoing a complete hysterectomy I didn’t need or consent to. I was coerced into agreeing to removal of my uterus after experiencing a distended abdomen. I looked six or seven months pregnant and was wearing maternity clothes. Only after surgery did I learn that my distended abdomen had nothing to do with my uterus. At no time did I agree to removal of my cervix, tubes or ovaries. Even my doctor agreed that I should keep my healthy ovaries.

When I arrived at the hospital the morning of my surgery, I was presented with a consent form which listed the wrong surgical procedure. According to the new consent, all of my healthy female organs were to be removed. I explained to the nurse that this was not the surgery I agreed to and I refused to sign the consent. As I waited to speak with my doctor about this, another nurse came into my room and said he was going to give me something to relax me. I explained that I didn’t want to be given any medication since I had not signed the consent and was waiting to speak with my doctor.  As I was protesting, he injected my IV with Versed.

That was my last waking memory.

My next memory was that of seeing a nurse I didn’t recognize. I asked her if my doctor was on his way to talk with me and she told me that I had already had surgery. In disbelief, I began to sob and asked what type of surgery. I wanted to know what organs had been removed. She matter-of-factly said “You have nothing left.” I cried out that I wanted to die, a curious fact that is noted in my medical record. Everything seemed to be happening in slow motion. Although I lost a lot of blood and had to be taken back to surgery, I was released the next morning with a prescription for hormones and iron pills.  I had no idea just how much my life was about to change.

I went back to my apartment but everything seemed different. It wasn’t that the apartment had changed. It was me. I felt like a different person. I also felt an emptiness I’ve never known. I assumed this was only temporary and would pass as I healed. I remembered researching hysterectomy and reading about how some women feel emptiness afterward because they can no longer have children. Eventually, I healed from the outward surgical wounds, but the emptiness remained. It was an emptiness that transcended far beyond not being able to have any more children.  I suddenly found myself in a body that didn’t feel like mine. Every bone, muscle and joint cried out in pain. I felt as if I had aged twenty years. My abdomen never did return to normal size. My sexuality vanished. My emotions were blunted. I didn’t know what was happening to me but I was afraid – very afraid. I cried for no reason and for every reason.  I did not want to live in the body I’d been left with.

Not knowing what else to do, I went out to a local bookstore and bought every book I could find on the topic of hysterectomy and hormones. One of the first books I read was “Hysterectomy Hoax” by Stanley West M.D. By the time I finished reading Dr. West’s book, I was finally wide awake. I had been castrated and there was no turning back. Finally, I realized I did not feel like the same woman because I wasn’t the same woman.  I felt a deep sense of betrayal. I became desperate to find a way to “fix” myself.

The truth is that there are over 400 estrogen receptor sites in a woman’s body. Every organ depends on an estrogen type hormone to function properly (there are three main estrogens: estrone, estradiol and estriol along with many more we’re only now beginning to understand) . Estrogens protect the heart, brain, lungs, bladder and more. The thyroid gland has estrogen receptors. When the ovaries are removed, the body often attacks the thyroid. Many women who’ve undergone hysterectomy go on to develop thyroid anti-bodies and/or thyroid disease. I developed thyroid problems almost immediately after surgery. I was first diagnosed with Hashimoto’s disease and then Hypothryroidism. I’ll have to take thyroid medication for the rest of my life. A woman’s brain has estrogen receptors too. Without estrogens, the brain develops diseases such as Dementia and Parkinson’s Disease. Memory and concentration are very real problems I face almost daily. Heart disease is a much greater risk for woman once their female organs are removed due to the loss of heart protection via the loss of estrogens.

The hormone replacement therapy (HRT) my doctor prescribed was not helping and was, in fact, making me feel much worse.  I was taking Premarin – an estrogen made from pregnant mare’s urine. The chemical structure of Premarin is nothing like a woman’s own natural estrogens. Because my body wasn’t tolerating Premarin, I began to research hormones — especially, bioidentical hormones. After I met with a hormone doctor, blood tests confirmed that all of my hormone levels were nearly non-existent. I was prescribed bioidentical estradiol and testosterone crèmes and compounded oral progesterone. Additionally, I was prescribed supplements such as DHEA, Calcium, Vitamin D, etc.  The creams were very messy and didn’t seem to help. I tried wearing a bioidentical estrogen patch (Vivelle Dot) but the adhesive made my skin break out with a blistery rash. Nothing was working.

Finally, I found a hormone doctor who uses bioidentical hormone pellets.  I decided to give the pellets a try even though they are quite expensive. They seem to work better for me than anything else I’ve tried.  My doctor inserts estrogen and testosterone pellets about every three months and I still take a compounded oral progesterone by mouth each night. Many doctors don’t prescribe progesterone for women who have undergone hysterectomy, but I learned through my own research that progesterone is critical for proper hormone balance. Nothing works like a woman’s own natural hormones but for a woman who has undergone hysterectomy and ovary removal, hormone “replacement” is a must.

As the days turned into weeks and the weeks turned into months, I realized that I was not getting back to my old self. In fact, I was getting further and further away from myself. Within the first year of surgery, I was diagnosed with severe vaginal atrophy and third degree bladder prolapse. The pelvic organs I had left, drifted down into the open space left from removal of my uterus. Chronic constipation became a huge problem. I experienced nerve damage that often prevented me from standing or walking. I developed problems with my eyes and was eventually diagnosed with severe dry eye disease. Due to corneal ulcers, I’m now legally blind in my left eye and can no longer see to drive.

Sadly, the aftermath of hysterectomy is filled with a lot of losses. There’s no turning back. Hysterectomy is final. For the woman who undergoes hysterectomy, life is forever changed. I lost my health, my career and then my home. I was engaged to be married at the time of surgery but never did marry. Unfortunately, it’s not uncommon for women to end up divorced and alone after hysterectomy. There have been more times than I’d like to admit that I felt all alone in my devastation. I felt as if I had stepped into some alternate world where I could no longer communicate. Hysterectomy impacts every facet of a woman’s life.  Every single cell is impacted.  And yet, nobody is talking about it.

For this reason, I decided to create a blog site and web site. I knew there must be other women who felt as alone and devastated as I did. Since creating my sites, I’ve heard from women all over the country, and sadly, their stories are all pretty much the same.  The names are different but the stories are the same. Many of their stories are posted on my web site. Most women share the feeling of betrayal. Once they awaken to the many adverse consequences of hysterectomy, they feel deeply betrayed by their doctor for not telling them about the true impact of the removal of their female organs. The trauma can’t be overstated. Women deserve better than this. They deserve to be told the consequences of hysterectomy and informed about the alternatives to hysterectomy. My goal is to make this a reality. I testified in both Indiana and Kentucky regarding hysterectomy informed consent laws and I created a petition on Change.org insisting ACOG (American Congress of Obstetricians and Gynecologists) inform women of the many consequences of hysterectomy and ovary removal (castration).  I support Hormones Matter and their research on hysterectomy. If you have had a hysterectomy, take The Hysterectomy Survey. Your data could save the life of another woman.

My Websites and Social Media

Website: Hysterectomy Consequences

Blog: Hysterectomylies

Twitter: www.twitter.com/jiggaz31

Facebook: www.facebook.com/hysterectomyconsequences

change.org petition: Help Stop Unnecessary Hysterectomy and Castration

 

 

 

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Help a Fellow Women’s Health Advocate: Hysterectomy Kickstarter Project

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Little things make an enormous difference. It is true what they say, it is often the smallest things that can make the biggest difference, especially when it comes to our lives. This is true for hysterectomy stories.

Estimates suggest that 1 in 5 women will have a hysterectomy at some point; in the UK around 60,000 are performed every year and in the US the number is closer to 600,000. It is said that a hysterectomy cuts to the heart of what being a woman is all about; and I know this is true because the small stories I hear tell me this.

Simple stories from women who have undergone the trauma of hysterectomy can make a huge difference to others having one later. Such stories help them to feel less unsure about their decisions, less stupid about the questions they ask and less alone than they do even with family and friends.

But not all women have access to these stories and so The Hysterectomy Association is planning to pull as many together as possible into a new book called ‘In My Own Words: Women’s Experiences of Hysterectomy’. But we can’t do it without your help. We need to get this project funded.

Please will you pledge to the project today; a small amount of even £1 takes us closer to our goal of £2,500. These amounts soon mount up when lots of people pledge and I’d rather reach 500 people who have each pledged just £1, than 40 people pledging £5. Of course, if you can pledge more it will always be very welcome.

Please pledge today at Kickstarter to help us get this book out to the women that need it. We need to get pledges to the whole amount by the 9th March otherwise we get nothing.

This is a project that is close to my heart, over the years I’ve spoken with, emailed and comforted tens of thousands of women and each one has a story to tell, and each story deserves to be heard. Click here if you’d like to see some of the stories women have shared on The Hysterectomy Association website, just to see how powerful they can be.

To make your pledge, click here: In My Own Words: Women’s Experiences of Hysterectomy.

About the author: Linda Parkinson-Hardman is an author, social media strategist and a social entrepreneur. She works with clients to help them make better use of the Internet to build their personal and business brands. Her social enterprise, The Hysterectomy Association currently works with approximately 200,000 women every month. You can find her online on Twitter, LinkedIn and Facebook and if you have a question you only have to ask.

A note from Hormones Matter: Hormones Matter is pleased to lend our support for this important cause. We are not affiliated with The Hysterectomy Association but support its efforts to raise public awareness about this all-too-common, yet poorly understood, procedure. Together, grass roots organizations like Hormones Matter and The Hysterectomy Association can improve women’s healthcare – one woman at a time.

For our part, we are conducting critical women’s health research on hysterectomy outcomes and oral contraceptive side-effects. If you have had a hysterectomy or have ever used oral contraceptives, please take a few minutes to complete the Hysterectomy Survey or the Oral Contraceptives Survey or both. They are free, anonymous and will bring much needed data to women’s healthcare.

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