complete hysterectomy

Conquering the Uterus – Trends in Hysterectomy

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hysterectomy

Every 10 minutes, 12 American women lose their reproductive organs, every day of every year. Hysterectomy is second only to cesarean in common surgeries. Approximately 660 women die each year in the United States from complications related to hysterectomy. Thousands more suffer long term side effects associated with oophorectomy – removal of the ovaries. The most common reasons for hysterectomy include:  uterine fibroids or rather the menorrhagia, heavy bleeding associated with the fibroids and endometriosis, an incredibly painful condition where uterine tissue grows outside the uterus. Both conditions are hormonally modulated, plague millions of women and take years to develop.

One would think that with such extended period of disease progression, 5-10 years, researchers and clinicians would have ample opportunity to develop innovative treatment protocols, long before the surgical removal of the uterus was necessitated. One would be wrong. Despite the cost of long term care leading to, and as a result of the hysterectomy; despite the outcry from the hundreds of patient associations, some with high profile members; despite the billions of dollars spent annually on performing what should be last resort surgeries, there has been no innovation in diagnostic tools for these conditions and no new therapeutics for women’s reproductive health developed in over 50 years, unless you call the re-purposing of old meds innovation.

Instead, innovation in women’s healthcare, much like American healthcare in general only magnified exponentially, comes at the end of the disease progression – when no other choice but surgery exists. Let’s build a cool robotic tool to remove even more uteri. Sure it will cost significantly more and have a higher complication rate, but the technology is so impressive that does not matter. Forget about developing early diagnostics and less invasive, more effective therapeutics, just take it all out and look cool doing so. Who would not want to perform surgery remotely with a million dollar piece of medical technology? Women don’t need their uteri anyway – a win win for all involved.

Robotic Assisted Hysterectomy

The robotic, joystick controlled, remote surgical tool is an impressive piece of engineering. With a price tag of over a million dollars per, it provides the cutting edge stature that all top-notch hospitals strive for. An added bonus, it makes gynecology, the long derided medical profession, the cool kid on the block. But does it work?

Well, not really. Sure it removes a woman’s uterus more quickly and with less scarring; a single ½ inch belly button scare versus two or three ½ inch abdominal scars, but it costs more and doesn’t reduce complications – may even increase them a bit. Compared to the minimally invasive laparoscopic hysterectomy, the robotic assisted hysterectomy costs $2000 more per procedure. As of 2010, about a quarter of all hysterectomies were performed robotically. That’s about $300 million dollars per year more to perform a robotic hysterectomy with no added gain health.  When combined with the costs multiple hospital stays, ineffective therapeutics and possible other surgeries that often led up to the hysterectomy, it is clear why women’s healthcare is so expensive.

Perhaps we could use our health dollars a little more wisely. Maybe we should spend some of those many billions of dollars or even a fraction of the $300 million spent annually on robot surgery, on prevention, early diagnostics or more effective therapeutics.

Update

Since this article was originally published in 2013, additional reports of complication rates for robotic surgery have been published. In a study of 298 patients undergoing robotic hysterectomy published in 2015, the complication rate was 18%. In 2017, a study of complication rates of a single surgeon using the robot, was 5.5% suggesting that some surgeons are better with this tool than others. In comparison, a study looking at 4505 hysterectomies performed by the same team between 1990 and 2006 (3190 were performed by laparoscopy, 906 by the vaginal route and 409 by laparotomy) saw the complication rates below 1%, significantly lower than that of the robotic surgeries, but again demonstrating that the skill of the surgical team is paramount.

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Photo by Sander Sammy on Unsplash.

This article was published originally on March 18, 2013.

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Amniotic Fluid Embolism and Total Hysterectomy

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In June of 2021 I was pregnant with my 14th child. After having birthed 14 children, I was familiar with labor and delivery and how my body responded to each. Towards the end of this pregnancy, I knew something was wrong and went to the hospital repeatedly, but was turned away each time. It felt like my water had broken, but at each visit, the doctor would say, “I’m sorry, your water didn’t break,” but I knew it did. Why didn’t they believe me? Later, I would learn that my water had broken and that I was developing something called an amniotic fluid embolism.

The Weeks Leading Up to the Amniotic Fluid Embolism

I don’t have any memories of June, but I have my text messages that I wrote to various family members and friends. June 17th was the final day I went to the hospital without being sent home. The doctor decided to “have a look” – finally. She said that I had a slight tear in my bag of water and that when I sat down or stood up my baby’s head was “blocking the tear, essentially his head was acting like a cork.” With this, they finally kept me at the hospital. I was 40 weeks, 1 day pregnant on June 17th.

The doctor got really busy in the O.R. and so I didn’t get induced until later that night or very early June 18th. When I was induced, all hell broke loose. Thankfully, I don’t remember much. I am told that I had a seizure and then went into cardiac arrest. I was rushed to the O.R. where my obstetrician performed an emergency C-section. They had my son out within 4 minutes from the time I began to seize.

I began to hemorrhage soon after they delivered my son. Unfortunately, my obstetrician had no clue what was going on with me. So she decided to remove my ovaries, fallopian tubes, and uterus. That didn’t stop the hemorrhaging. Even if she had have removed all of my organs, it wouldn’t have stopped the hemorrhaging. I had an amniotic fluid embolism, unbeknownst to my obstetrician. In this type of embolism, amniotic fluid, along with other material, like fetal cells, enter the mother’s bloodstream causing all sorts of problems, many of which I had been complaining about prior to the delivery. The sensation of my water having broken and the confirmation of the slight tear, which had developed some time earlier in the month, should have been an indication that something was wrong. Some research shows, 78% of cases amniotic embolism develop from ruptured membranes, a third of them, spontaneous like mine. Together with the seizures and sudden cardiovascular collapse that I experienced when induced, this pointed towards a possible amniotic embolism. According to the research, this type of embolism develops in about 1 in 8000, pregnancies, but is likely underreported because of misdiagnosis.

Total Hysterectomy for Amniotic Fluid Embolism?

While I am lucky to have survived the amniotic fluid embolism, many women do not, the total hysterectomy, performed to stop the hemorrhaging, has destroyed my life. I have spoken with many women from across the world who have suffered from an amniotic fluid embolism. Many of them still have their female organs. Why didn’t I? I still don’t understand why they decided to take everything out. A total hysterectomy that includes the removal of one’s ovaries, has devastating consequences to all aspects of a woman’s health, especially mental health.

When I came home from the hospital, I knew that I was no longer the mother of 14 children. I was no longer a wife. I was no longer me.

Our son will be 5 months old in a few days. I have yet to bond with him. I see the sadness in his eyes and it destroys me over and over again. When my obstetrician made this decision, she didn’t just destroy my life, but the lives of 15 other people. Every day I ask God, “Why am I here?” I don’t want to be here. The mental problems this has caused are disastrous. The physical problems are horrible. Headaches, backaches, pain in my neck, legs, prolapsed bladder, unbelievable heart palpitations, and extreme fatigue, to name a few.

The psychological impact this has had on me is sad at best. I don’t know how to love people anymore. Not even my own children or husband. I can’t handle being around people.

For anyone ever considering a complete hysterectomy as an elective surgery, please reconsider! I have sought out a naturopathic doctor and physiotherapist to help with all of my problems. I wish I could say that I am having great success, but it hasn’t happened yet. I don’t know if it will. My only saving grace is my faith in God. Thank you for reading. God bless.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Hysterectomy, Hormones and Suicide

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hysterectomy and suicide

It may seem like quite the leap from hysterectomy to suicide, but it really isn’t a leap at all. Hysterectomy with ovary removal induces what doctors refer to as “surgical menopause.” There’s really no such thing as “surgical” menopause. Hysterectomy with oophorectomy is the female equivalent to male castration and as such carries with it all the risks and associated hormone changes that one might expect when primary endocrine producing glands are removed. The precipitous drop in hormones, much like those experienced following childbirth, can and does have calamitous effects on mental health, not to mention physical health. Perhaps the only difference between male castration and female castration is the fact that female castration is performed regularly and without regard to the physiological and psychological side effects that ensue.

Why Write about Hysterectomy and Suicide?

I decided to write this post because I was castrated, against my will, without consent and have struggled with a myriad of health problems ever since. You can read my story here, here and here. In the years since my ovaries were removed, I have worked hard to spread awareness about the devastating health consequences that this common surgery elicits. Over those years, I have heard from hundreds of women who have experienced similar suffering.

“I was a bright light until a doctor murdered me on (she gives the “exact” date of her surgery). Only a woman with a complete hysterectomy can remember that date. I have had surgeries before, but I never remembered any of those dates. You will always remember when you went into have something done simply to stop heavy bleeding and going in as one person and then the doctor switching you with some kind of alien when you wake up.  Within a year, I was 50 pounds overweight and my thyroid had a nodule on it that was cancerous. I had the worst fatigue and suicidal depression there could be.

I can’t believe I made it. I remember telling my 10 year old I didn’t want to live anymore and he kept saying “don’t say that momma, yes you do”. There is no one that could ever comprehend this hell unless they have been through it. I’m overweight with fibromyalgia and fatigue, talking myself out of suicide constantly. I have metabolic syndrome and I’m insulin resistant. I have constant lightheadedness, difficulty swallowing, broken out and dry skin. I have never even tried to go back to having sex simply because I stopped dating. I stopped being the happy, vivacious, beautiful woman I once was. I have been to 45 specialists in the last 10 years including Mayo Clinic to the point where I know I know more about hormones then they do!”

Another woman wrote to me recently stating she too was suicidal just thinking about the 1 year anniversary of her hysterectomy. She wrote:

“Exactly one year ago today, I was on an operating table being castrated and mutilated – the pain too much to bear. I wish I could stop this rapidly aging skin, body and hair loss. My body and soul are devastated. Shaking and in utter disbelief. The person I was before died the day of hysterectomy: my life, body, personality and every other aspect of the life I once knew is dead and over.

So, it is a rebirth of this hideous and painful existence of a stranger living inside a new broken body, soul, personality, etc. I very much relate to Frankenstein who was created in a laboratory unwillingly and without forewarning (informed consent) and awakened to a strange world he could not relate to nor understand. He was full of pain inside and out with all of those gory stitches, having to learn to walk, talk and the great torment he had of being here. Frankenstein is a fictitious character, but I can relate, for I, feel like a monster. I would give anything to be whole again. I know what I now am, and that is a “Castrati” and “Eunuch”.

More recently, a good friend that I came to know through my website committed suicide after years of struggling with post hysterectomy health issues. Before she died, Toni sent me her story in her own words and asked me if I’d post it on my site so other women could be warned about what life post-surgery is really like. She didn’t want what happened to her to be in vain. She wrote in part:

“I am a changed human being. I sometimes do not even want to get out of bed. My poor husband… he misses the woman and wife I was. She is gone. She was taken the day I had a hysterectomy. I am a “shell” of a woman now.”

This shouldn’t happen. Young women should not be castrated and then thrust into a world of ill-health and darkness. Hysterectomy, especially when the ovaries are removed too, should be an option of last resort, not something cavalierly recommended to young women, nowhere near menopause.

I wrote this post for the women who have lost their ovaries, lost their health, their vitality, their sex lives and their hope. I am not sure that I can give you hope, but I can give you a voice until you can find your own voice and together we can stop this practice and prevent other women from suffering.

Natural Menopause, Hysterectomy and Castration: It’s all about the Hormones

Natural menopause. It is important to talk briefly about the effects of “natural” menopause in order to better understand the effects of hysterectomy and castration. Even natural menopause is a “game-changer” for most women with some of the more commonly discussed symptoms being hot flashes, mood swings and dry vagina. ACOG lists over twenty adverse effects of menopause in their Menopause Patient Information Pamphlet including but not limited to: hot flashes, insomnia, dry/thin vagina, increased risk of urinary and bladder infections, increased bone loss and risk for fracture, loss of heart protection and increased risk of heart attack and stroke, emotional changes such as nervousness, irritability and fatigue, loss of libido and difficulty achieving orgasm. There are more symptoms not specifically listed, but these are enough to take your breath away. It is important to keep in mind that these symptoms develop gradually over years during the natural process of endocrine senescence or aging. The process is complicated and researchers still don’t understand the full spectrum of changes that happen when women age. Some hormones decline, others increase to compensate, immune factors are involved and the entire body changes to adapt to the new reality. The experience of menopause in each woman differs with some experiencing very few symptoms and others experiencing great difficulties. The key points are that menopause is gradual and complicated. It is not just the removal of estrogens and progesterone. Many other hormone systems recalibrate.

Hysterectomy without Oophorectomy.  Hysterectomy without ovary removal is common. The thought is that if the ovaries are left in place, vital hormones will continue to be produced and circulated. To some extent that is true and women who retain their ovaries seem to fair better than those who do not. However, hormones work through feedback loops, the uterus contains many important hormone receptors that communicate with the ovaries. When the uterus and cervix are removed, those receptors are removed too. Without those receptors, communication ceases and the ovarian production of hormones will cease as well; more gradually than if the ovaries had been removed, but more rapidly than in natural menopause.

Castration. When the ovaries are removed, we call this castration. It is no different than removing a man’s testicles. Oophorectomy precipitates a radical change in hormones overnight. Symptoms hit within a matter of hours rather than years. Ovary removal is akin to a ‘cold turkey’ full throttle withdrawal from very strong drugs, the complexity of which we still don’t fully understand.

Concentrations of the estrogens and progesterone drop to nearly nothing, almost immediately, while testosterone concentrations decrease by half. In natural menopause, the adrenals can pick up some of the slack and produce more estrogens and other hormones, but with oophorectomy there is no time, just an immediate crash; a crash that most women, their families or their physicians are not prepared for, because nowhere in the literature given to the patients is this discussed.

Female Castration According to Experts

The American Congress of Obstetricians and Gynecologists (ACOG) calls female castrations ‘surgical menopause’  and although they recognize the severity of hormone changes in their professional literature:  “The effects of surgical menopause are severe due to hormone levels decreasing all at once,” the severity of the hormone dysregulation initiated by surgical menopause is not even mentioned in their patient literature: ACOG’s Hysterectomy Patient Information Pamphlet. In fact, the term “surgical menopause” is not even used. Instead, the pamphlet says

“Depending on your age, if your ovaries are removed during hysterectomy, you will have signs and symptoms caused by a lack of estrogen, which include hot flashes, vaginal dryness and sleep problems. You also may be at risk of a fracture caused by osteoporosis at an earlier age than women who go through natural menopause. Most women who have these intense symptoms can be treated with estrogen.”

There’s no mention of castration or even the more benign term surgical menopause. If these terms were mentioned, some women might think to look for a pamphlet about those topics. In other words, they’d connect the dots. As things stand now, there are no dots to connect. The severity of the side effects are downplayed considerably.

The Myth of Hormone Replacement Therapy Post Hysterectomy

To make matters worse, many castrated women are left with no way of supplementing the hormones they’ve lost. They’re simply sent on their way. Others are prescribed a “one size fits all” hormone therapy such as Premarin which is derived from the urine of pregnant mares. While it may work for some women, it comes with serious side effects and doesn’t seem to work for women who have been castrated, likely because the ovaries produce more than just the estrogens and synthetic hormones are not capable of replacing what the body produces on its own.

“I am a 46 old and had a hysterectomy for which my uterus, cervix and both ovaries were taken in 2011. This was due to having endometriosis since I was 22 and having it laparoscopically removed three times, for which my doctor had advised to just have total hysterectomy instead of surgeries. I, however, wanted to hold on to my ovaries. That day did come that I agreed to have all removed, and can I say that I count that as the last day of my life. I have been living in a life just short of a Stephen King novel. I decided after surgery to wing it with no HRT at all and done that for a whole year. In 2012, I decided to try Premarin at the suggestion of my doctor. This was because of the night and day sweats, intense cold spells, horrific mood swings, insomnia, drastic weight gain, memory loss and forgetfulness and loss of libido to name a few symptoms that had gotten to me severely. The hormones worked for 1 month. Then all symptoms came back with a vengeance! My doctor wanted to double my dosage of premarin, but my scare of cancer quickly stopped that. I am now holding on day by day. I have lost half of my hair since coming off HRT. Every day, suicidal thoughts are in my mind, I mean it is all so hopeless to me. Just wish I could reverse the surgery, but that is not possible. HELP”

Sadly, many doctors even prescribe psychotropic drugs, as if they could somehow replace a woman’s own natural hormones.

Depression Post Hysterectomy

Depression is a very common problem for women who’ve been castrated, but one that is rarely acknowledged appropriately.  Given the vast biochemical changes a woman’s body is thrust into, it seems likely that she could be propelled into a severe depression and should be warned accordingly, before the surgery.

To better understand how traumatic castration can be, consider a few things we now know about women going through “natural” menopause: 1) women going through natural menopause are three times more likely to be diagnosed with depression than the general population 2) this is true even when there is no prior history of depression and maybe most surprising 3) natural menopause is a time in a woman’s life when she is most likely to commit suicide. Of course, women who’ve been castrated are at the highest risk of all due to the immediate drop in hormones and the severity of symptoms. Add this to the fact that a castrated woman’s adrenal glands are suddenly placed under the extreme stress of taking over for missing ovaries and other organs throughout the body become likewise stressed. All of this additional stress on the body’s organs and systems can, of course, lead to diabetes, autoimmune diseases, heart disease, brain diseases, cancer, etc.

Depression Post Female Castration

Depression brought on by castration is unique in that it only happens to women undergoing this certain type of life change – this specific surgery. It’s much more than just a bout of the blues. It isn’t a weakness or flaw in character, nor is it something that you can simply “snap out” of.  No – this type of depression may require long-term treatment. Stanley West MD, author of “Hysterectomy Hoax”, wrote “…this is much more than the blues; it is serious enough to require hospitalization for some women, lengthy counseling and drug treatment.” The chemical imbalances brought on by castration can lead to a woman becoming clinically depressed. And if the depression continues, then suicide becomes a genuine risk factor.

Is There Help?

So, where exactly does a castrated woman turn for help? Since this type of depression stems from an imbalance of hormones that includes the loss of vital estrogens, progesterone, and androgens, hormone therapy becomes all the more important since it raises those levels again to some extent. However, castrated women may also require a wide range of hormone supplements. Combinations of estradiol and estriol may be necessary and these should be balanced with progesterone and sometimes testosterone. DHEA might need to be added too. Because sex hormones are important to so many other hormone systems in the body, a woman who has undergone castration may also need supplements to help with her thyroid and adrenal glands.

For counseling, reach out to the resources in your area. A brief list can be found here.

Castration requires close follow-up care. And yet, very few doctors seem to be seriously engaged in helping castrated women regain their health and vitality. This is yet another reason women become depressed. There’s really nowhere to turn for help. Instead, most women find out very quickly that all of their post-surgery “complaints” will be dismissed as a mental problem of some sort. ACOG mentions only one reason for “emotional changes” post-hysterectomy: “Some women feel depressed because they can no longer have children.” Personally, I’ve not heard from one woman who said they felt depressed for this reason. The women I hear from tell me they’re often made to feel that nothing is “really” wrong with them – that it must all be in their head. In short, they’re made to feel “crazy”. But the issues are real.  Read any of the stories below and there is no doubt that the suffering is legitimate. Hormones impact brain chemistry as well as every other physiological system in the body. Remove a primary source for those hormones and there will be problems. How can there not be?

The Reality of Ovary Removal

This is what women who have been castrated say about their lives post-surgery. Let me warn you: it’s not pretty. Please note that some comments have been edited for brevity. It’s the same story over and over and over again. Only the names change.

“I have not been the same woman since my hysterectomy. Within one week of surgical menopause, at age 42, I became clinically depressed. It went downhill from there — no sex drive, weight gain, anxiety plus depression, bone loss and energy loss. Basically, I’ve felt like I was falling apart. I have been on the estradiol patch and an antidepressant since my hysterectomy. I would have kept my ovaries if I had known what would happen.”

“I had a hysterectomy 2 years ago. Since then, I have had nothing but trouble. The surgeon took away my ovaries, so I have no estrogen in my body – only testosterone. This makes me very angry all the time. I refuse to take HRT because my mother had breast cancer. I have no interest in sex whatsoever, and am on anti-depressants all the time. Hysterectomy has ruined my life, and if I could go back, I would not have had it done. I would have just put up with the fibroids. My advice to anyone contemplating this is to think long and hard. If there is an alternative route you can take, do so! I would not wish this on my worst enemy!”

 “I will be turning 40 this year and 3 years ago I had my hysterectomy. Ever since then, I have not been the same. I’ve gained weight, have hot flashes, aches and pains everywhere and am moody. If I had to do it over, I would never have a complete hysterectomy. I used to be full of life and now all I want to do is hate the world or cry over everything.”

“When I woke up in ICU almost 24 hrs later with a tube in my throat I motioned for a pen and wrote the word hysterectomy with a question mark. I don’t know how I knew, I just did. After the doctor carelessly punctured my uterine artery he decided that the best way to fix his mistake was to take out everything that made me a woman. He nearly killed me. They had to give me 15 units of blood while they frantically carved out more and more. He never even came to see me after he butchered me to explain what happened or why he ruined my life and my families’ future. I have never seen him again. I am 35yrs old in surgical menopause. Some days I wonder if my young husband will leave me for a woman that can still have children. I have never posted a comment on any site about anything. I read your story and felt that you were the first person that knew what I was feeling.” 

Sadly, there are more similar hysterectomy comments and stories on my website which I refer to as “hysterectomy hell”. You can read those stories here and here. There are forums and blogs all over the Internet too where women gather and pour out their inner-most feelings about their lives after surgery. Most women can’t sleep, so they reach out during the night for help, seek answers for what’s happened to them and otherwise just try to fill the void.

Families of Women Who Have Been Castrated

One adult child wrote about her mother’s hysterectomy:

“After we moved to a ranch house in an exclusive residential suburb of Minneapolis when I was 8, my mother stopped singing. That wasn’t the only change in her during the summer of our elevation from middle- to upper-middle class. Her hair seemed to turn white very suddenly and her personality altered just as drastically.

I learned to test the air when I got home from school, trying to discover what mood she was in that day: playful, full of games and secrets, or grim and tight-lipped, on the edge of tears.

Later, I discovered from old medical records that Mother had had a hysterectomy during the summer of our move, when she was only 38. Being plunged into early menopause could explain her mood swings, I now realize, the tearful scenes, the tranquilizers, but then my 8-year-old mind developed a theory that my sweet, raven-haired mother had somehow been kidnapped and replaced by a white-haired virago who resembled her. I remember poring over the family photographs in the mahogany sideboard, trying to determine when the substitution had taken place. Mother never sang to us again after that summer and when we asked her to, she replied that her voice was gone: ‘I’m too old to sing’.”

I could share so many more heart-wrenching comments and messages like these, but I feel I’ve shared enough to substantiate that women who undergo hysterectomy and castration, especially when uniformed, misinformed or not informed at all, suffer beyond words really and so do the families. There’s certainly no shortage of post-hysterectomy horror stories. Maybe woman who undergo hysterectomy and castration to save their life are better able to cope. I don’t know. What I do know is that far too many hysterectomies are performed for other reasons and many of those women feel extremely betrayed. They never get over it as the many comments here suggest. In the case where there’s no consent, hysterectomy and castration is considered assault and battery. That’s criminal and that’s a very big deal. Women who’ve been surgically “assaulted” have even more trauma to come to terms with. There’s not much a woman in this situation can do other than file a medical malpractice suit against her doctor. Maneuvering and enduring the legal system is yet another nightmare all its own and isn’t a reality for most women (“victims” in the case of unconsented surgery).

There can be no question that so many women are experiencing profound depression. This is not something we can continue to ignore. This is a very real problem everybody should take seriously. After all, we’re talking about over half a million women going through this every year just in the United States alone. From a public health point of view, depression is a substantial illness with significant morbidity for patients (and their families). If the depression continues, then suicide absolutely becomes a genuine risk factor. It is so important for families of women who’ve undergone hysterectomy and castration to realize how serious the resulting depression can be and what it can lead to.

Personally, I’d love to see a huge drop in the number of women undergoing these mostly “unnecessary” and “elective” surgeries. Until such time, we’ve no choice but to begin this discussion in hopes of saving precious lives. Depression can be managed only when we talk about it openly – when there is no shame. Managing depression may include: hormone replacement therapy, talk therapy, proper diet, exercise, meditation (including prayer of course) and medication too if necessary.  While I’m no psychologist, I can tell you what has helped me survive post-hysterectomy depression. I’ve learned that it is critical to fix what’s fixable. Restore balance back by doing what you’re still able to do – whatever that is; it will be different for every woman. Like the “Prayer of Serenity”  change what you can, deal with the rest. We all only have so much energy left after such a life-altering surgery, so we need to learn to focus and use our energy on things we can change. This is by no means easy to do.

My Story

To be completely honest, I still struggle with depression since my unconsented hysterectomy. I guess I always will. And yes, I’ve been suicidal at times too. And while there may not be a “cure” for this type of depression, it helps a lot for women to know and understand they are not “crazy” or alone. Before social media and personal computers, women mostly suffered in silence. There’s no need for that today though.  A doctor from Australia who specializes in menopause and hormones once told me not to waste what I’ve suffered and so I’m trying to follow his advice. Specifically, he said

“You can’t waste what you have suffered. Others need not just to know, but to understand the depth of that hole, and how hard it was for you not just to climb out of it, but how hard it was to even have the energy or will to turn around as you plummeted to the bottom. And more than anything, they need to know that you can!”

So, we absolutely must start talking about the hysterectomy hole. We must share our stories so that others do not suffer as we have. And doctors too must stand up and speak out. If you’d like to share your story here on Hormones Matter, Write for Us.

Help us understand the consequences of hysterectomy – take a survey. The Hysterectomy Survey.

Sign a Petition to End Unnecessary Hysterectomies

Contact the Author

This post was published previously in July 2014. 

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My Hysterectomy Horror

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hysterectomy horror

It all began when I noticed a tiny pinkish spot on my underwear. Maybe a bit of dryness, or perhaps a slight infection. But a few days later it happened again. Doing some research, I was convinced it was due to vaginal dryness–nothing to worry about. But a week or so later, there was real, actual blood on the toilet paper. It was obvious that something was going on that was perhaps more serious. Couldn’t put it off any longer–a trip to a gynecologist was in order.

Being new to the area, I searched the Internet and found a Dr. C. His “Healthgrades” on the web were all glowing five star reviews. So off to him I went. I hadn’t seen one of these specialists in decades. There was no need to. Never any pain, no discharge and only the occasional UTI, which my family physician took care of. With no symptoms (until now) it seemed a waste of time and money. So I made an appointment with his office, a bit concerned but not overly so.

Dr. C was not intimidating, but there was something about him I did not like, although I could not put my finger on it. He greeted me kindly enough, talked about mundane matters and in general seemed a decent man. Then all of a sudden his demeanor changed, even before he had read through the history I had filled out in the waiting room. He started pointing out various things: my age, my early first menstrual period (at the age of 10) and my relatively late menopause (maybe 55? I cannot remember exactly). He then told me about the profile of women who were at high risk for endometrial cancer. Which of course I fit to a “T”.

The Big Sell Begins

Before he even examined me, the very next thing he did was to start talking about that wonderful new surgical instrument, the DaVinci robot. He explained that in most cases, women could avoid the large incision and blood loss because this method was an assisted laparoscopic procedure and patients were bouncing back to their former lives in a matter of weeks after having a total hysterectomy. Why was he discussing this now, before there was no exam, no diagnosis? My head was reeling.

After being lectured for not having annual mammograms, he wrote out a prescription and told me to get one post haste. Finally, the physical exam. After he looked around a bit, the speculum pinching and my nerves now totally frazzled, he took a Pap smear (the cotton tip was covered in blood). Then I was told to dress and come back into his office.

He told me that to rule out cancer he had to do a hysteroscopy–a procedure where the uterus is filled with saline solution, samples of the lining were removed for biopsy, and also pictures were taken of anything that looked amiss. But since his schedule was pretty tight, he advised me to get the mammogram first and then set up an appointment for the procedure sometime in the coming weeks.

Back in his office, he had me watch a video (everything already set up before I had even entered the room) about how all these women of various ages were giving glowing reports of their wonderful hysterectomies done by this latest advancement in surgical procedures. Back to work, back to exercising, back to everything in their former lives in six weeks! As I watched, my mind kept asking–why is he showing me this now, when not a single biopsy had been done and he had seen nothing amiss during his examination? After receiving the date of my hysteroscopy and pre-surgical testing, I left his office shaking, frightened, a bad headache coming on, and the thought that I just might be dying.

Phase 1 of the Hysterectomy Sales Job: Stoking the Fear of Cancer

I had the mammogram. The results were mailed to me, indicating that something was seen in my left breast and that I should come back for a more detailed look at this foreign mass that could not be felt by a physical exam. I went back to have a more in depth mammogram of my left breast. About a half hour later a radiologist spoke to me and said that it looked like I had a fibroadenoma, a type of benign lump. But the only way to be sure was to have it biopsied. I was given an appointment with yet another doctor; this time a general surgeon. After feeling around my left breast without success, he finally found it buried deep near the chest wall. He squeezed so hard I cried out in pain. His conclusion was to have it biopsied and then go from there.

I went to C— Medical Center, where an associate of the surgeon used a puncher to withdraw nine samples from the tumor, putting in a tiny metal clip to mark the spot. I was then subjected to still another mammogram against my vehement objections-I told them I thought I have been irradiated enough-to assure that the clip was in the right place. I left very angry, wondering how they dared to go against my rights as a patient to refuse any aspect of treatment. But their attempts to thoroughly frighten me about the “Big C” were very successful.

I returned to C— Medical Center for the hysteroscopy. Dr. C was almost one hour late, greatly increasing my sense of apprehension as well as giving me a pounding headache and trembling all over from nerves. Finally, I was wheeled into the operating room. It was a relatively short procedure and I woke up about 45 minutes later. As I was in recovery, Dr. C spoke to my husband in the waiting area, telling him that he had found some polyps but as far as he could tell there was no cancer present. While showing me the photos of the polyps, he mentioned that he would have to wait for the pathology report, but he was certain everything was benign as he had already done a microscopic examination of the growths. As I was dressing to leave, my husband came to help and informed me of what Dr. C had told him.

One of the nurses advised me to make a follow up appointment to see the doctor as he would be receiving the official pathology report as well as the results of my breast biopsies. However, I learned that he would be going away to Maine for a two week vacation and would see me when he returned.

Two weeks! A long time to find out if there was cancer in either my breast, my uterus, or both. So I endured the wait, trying to keep my mind occupied with other things and also dealing with my entire uterus aching from the hysteroscopy. Regardless, I felt positive and when my follow up day arrived I walked into his office believing that all was fine, based on what my husband had been told.

During the follow-up visit, Dr. C told me that although the breast biopsy was benign, there was an encapsulated cancer in one of the endometrial polyps. The shock I felt cannot be described. Hadn’t he said everything looked good? I hardly heard his next words: that if he were to get cancer, “this is the type he would wish to have as it was very slow growing”.

Phase 2 of the Hysterectomy Sales Job: The Wonders of Robotic Surgery

He then began to tout the virtues of the DaVinci surgical system for hysterectomy, even remarking that he was thinking of becoming trained in the procedure and moving from private practice to becoming a specialist with the DaVinci. (He actually proceeded to do just that, and is now a practicing gynecological surgeon specializing in the DaVinci robotic surgery technique. That’s where the money is…but I digress.)

I was then forced to watch the same video TWICE about the wonders of robotic surgery-the same one I had seen at the time of my first visit. It did not reassure me. I had cancer growing inside me, and the happy, glowing faces of the women talking to me from the DVD player did nothing to reassure me that this was going to be easy and that everything would be rosy again.

While I was watching women jogging in a park and playing with their grandchildren on the video, Dr. C was on the phone to Dr. B, a gynecologic/oncologist who was “top of her field”. He spoke personally to Dr. B on the phone and was able to get me an appointment quickly. This couldn’t be happening; I walked into the office in such a positive mood and now my thoughts ran to how long I have to live. Despite his claims to the contrary, this would be major surgery and I would lose my (useless, as he put it) female organs.

I felt ill and told one of the nurses my head didn’t feel right. She took my blood pressure and it was around 204/107. The woman informed the doctor and he took me into another room and had me lie down as he would not let me drive home with such high numbers. And so there I was, lying on an exam table while he was telling me to imagine being on a tropical beach with the waves gently rolling to shore. How I did not have a stroke puzzles me to this day.

The drive home was one of the worst of my life. I told my husband the diagnosis, and he was as shocked as I was. I spent the greater part of the day crying, and even entertained suicidal thoughts thinking that just ending my existence quickly would be the easiest way to handle this. But truly all I could do was wait to see the oncologist, who would determine what course the rest of my life was going to take. My husband had suggested that I get a second opinion. At first this seemed reasonable to me, and I made an appointment with a second gynecologist to find out if such a drastic approach should be made. But I was so terrified of the “C” word, totally believing in the diagnosis and afraid that it would spread very quickly, that I decided to cancel and just go along with Dr. C. The fear they instilled in me was so intense I had lost my ability to think clearly.

Shortly after all the above had transpired, my husband and I sat in Dr. B’s office as she went through my records, which had been previously faxed over from Dr. C. Again the same words “If I had cancer, this is the type I would want to get”. (Much later, after perusing the internet, I found that these doctors seemed to be working from the same script, all using the exact same words to a large number of frightened women. To me this indicates they all received the same training and were told exactly how to present the “slow growing cancer” and the wonders of robotic surgery.) She then told us how she was going to perform a total hysterectomy/oophorectomy, probably using the DaVinci robot. Dr. B went into how there were risks including excessive bleeding, nerve damage and possibility of blood clots. It was then that I told her I had Reflex Sympathetic Dystrophy and felt that I was not a candidate for this type of surgery. The chances of the RSD spreading were high. She said she didn’t see where that would present any difficulty.

Hysterectomy and Robotic Surgery Side Effects Never Mentioned

Dr. B then went on to say that I would be put in a steep Trandelenburg position, with my head nearest the ground and my body near to a 45 degree angle. What she didn’t say was that this position would be maintained for about four hours. I was told that the abdomen would be pumped full of gas, but never mentioned the awful side effects that would occur post-op and that the gas would take a long time to dissipate. There was absolutely no discussion of what the ensuing lack of estrogen was to do to my body over time, the increased heart attack risk (which is very high in my family on both sides), osteoporosis etc., most stemming from the loss of my ovaries. Lastly, no mention was made of the weight gain of thirty pounds or more that the majority of women experience following a hysterectomy and how this weight would be almost impossible to lose. And the huge, huge breast size increase that would occur.

Dr. B then asked if we had any questions, but we could not think of anything else at the time. She just so happened to have a cancellation, thus assigning next Tuesday as the date of my surgery. Since this was only a few days away, I then went to my primary physician, Dr. C’s wife, who filled out the necessary forms to clear the way for the operation.

Pre-Hysterectomy Fear Sets In

The night before my surgery was living hell. I could not sleep. I thought of the cancer. If this is what I truly had, then perhaps I should just commit suicide then and there rather than go through years of suffering. Yes, that is the horrendous state my mind was in that night. But my husband sat up with me and tried to reassure me that all would work out in the end.

The day dawned, and by 7 am my husband and I were waiting in the pre-surgical cubicle. Dr. B was running late due to complications from her first surgery that day. I happened to mention that the night before I was wondering if it wouldn’t be better just to bring all this to some kind of premature end. Immediately, I was surrounded by hospital personnel and had a young student nurse sit with me. I was put on suicide watch, my surgery canceled. They wheeled me (with a security guard following) into the isolation room, where for the entire day every move I made was watched. Why was I there? I only expressed my fears over the future and had no suicide plan. I felt like a criminal. My handbag was turned upside down and the contents roughly shaken out onto the table. When I had to use the bathroom, an aide came in to watch my every move. I will never forget the humiliation I felt. This lasted until a psychiatrist came in that evening. He asked me why did I have to take Ativan four times a day! This was totally incorrect. It was prescribed as a PRN medication and I rarely took more than one or two in a week. The hospital apparently had screwed up my entire medication list. At any rate, I was OK to be discharged the next morning and the suicide watch was canceled. To this day I don’t feel free to tell any health professional if I am feeling suicidal or even close to thinking about it for fear of being subjected again to the demeaning treatment of being “locked up” for the crime of feeling overwhelmed.

Hysterectomy Day and the Pain of Recovery from Robotic Surgery

My surgery was re-scheduled for October 2. Back at C Medical Center, I was anesthetized and woke up in recovery screaming. I was wheeled into some kind of maintenance area while they prepared a room for me-all this while my agony was extremely apparent. My entire rib cage felt like knives were being thrust through it. I thought I was having a heart attack and would die right then and there. The response was for someone to bring in a dinner plate of regular food as though I hadn’t just had over four hours of being under heavy anesthesia. Eventually the terrible pains ended, and I later learned that because of the head downward position during surgery, most of the gas pumped into my abdomen ended up in my rib cage around my heart and lungs. No one ever prepared me for this.

While in my room, I kept asking where my regular medications were and why I was not being given my hydrocodone. They informed me that the pharmacy did not have my dose on hand. I called my husband. He came rushing back to the hospital to give me my pain medication. This was against “the rules”, but by then he was furious with the lack of care. When I asked for my night time medications as they helped me sleep, I was instead offered a regular sleeping pill, which I refused. My medications for my RSD and psychiatric conditions were withheld from me for my entire stay.

Dr. B arrived the next morning and when I informed her I had been given no pain meds because they “didn’t carry my dose”, she appeared angry and said that I should have been given two of the dose they presumably carried. I felt well enough to walk around the hall and was then discharged with the usual post-op instructions. There had been some benign cysts removed from one of my ovaries. Abdominal lymph nodes were removed. Everything was biopsied and came back benign.

Botched Surgery or Normal Aftereffects of a Robotic Surgery?

I came home Wednesday, October 3. All seemed fine until Friday evening, three days later, when I looked down and saw two large spots of dark blood growing ever bigger on my white T-Shirt. Extremely alarmed, I called Dr. B’s number. Her assistant, Dr. H. (whom I later learned had been present during my surgery) told me this was “normal”. If it didn’t stop I was to go to the ER; otherwise, just keep my regular follow-up appointment on Wednesday.

During my Wednesday appointment I told Dr. B what had happened. She did not seem concerned until she began taking the steri-strips from the incision above my naval. When she removed the one on the end a large amount of very dark red blood literally exploded out of the incision, so much so that her assistant had to jump back in order not to be sprayed by the blood. Then began a massive cleanup job as blood continued to come out with the removal of each steri-strip. Dr. B gave no explanation as to what had happened. She began packing the area with iodoform tape, shoving it into the incision (very roughly, I might add). She must have used over a yard of the tape. Dr. B then said that the incision had to be cleansed and packed twice daily for at least two weeks. Since my husband is an LPN, she instructed him how it should be done, and I was to come back the next week for a check up.

I then went through two weeks of hell, as the amount of packing needed was huge, the tape itself was scratchy and caused additional bleeding in and around the wound. I would have to stuff part of a pillow in my mouth to keep from screaming. The blood stained tape that was removed had to be pulled out of the wound each time, and the amount needed to pack the hole was, to me, unbelievable. Twice a day I had to endure this torture, while my husband tried to make the procedure as gentle as he could. But there is no way the scraping of the wound and the bleeding this caused could be anything but excruciating.

This went on for two weeks, and I told Dr. Brudie I could not stand it anymore. She then took about three large pieces of gauze and shoved it into the hole under and to the left of the original incision. Unfortunately, this proved to be not enough and it was back to the iodoform strip. Healing of this incision and area was long, painful and left me with a keloid scar that constantly feels as though someone is stabbing me in my belly. It only occurred to me later that a blood vessel must have been nicked during surgery.

The Pain Continues

Several months later I experienced pain in the keloid area and vomited up very light green fluid with small white pieces floating around. To this day I cannot eat more than a small amount of food at one time because of the pain it causes underneath the keloid.

Because my pain management doctor, Dr. G, had prescribed that I be given Ketamine during surgery to decrease possible complications from my RSD (and which the hospital VERY reluctantly used even though my pain management doctor had discussed this with Dr. B prior to surgery), it seemed my healing was proceeding normally. It was in November of that year that I suddenly experienced intense burning like fire from my groin area and down my legs. About one week later, large lipomas appeared on both thighs where the burning had been.

When I tried to discuss this with Dr. H (Dr. B had since moved back to Florida), the matter was dismissed. I believe these lipomas were the result of lymph node removal, but no one seemed to want to discuss this latest development. Occasionally I would experience a light reddish-pink discharge from my vagina. This was put down to vaginal dryness. I have since discovered that this would occur when I was severely constipated and the vaginal walls began rubbing against each other. This constipation is still an almost everyday affair.

Post Hysterectomy/Oophorectomy: Pain and Suffering

I had made up my mind that I was finished with all of this. Cancerhead was literally driving me crazy, as every ache and pain to my mind had to be cancer. My life has changed so much for the worse that I often feel that I died the day they took my female organs. I don’t understand why organs are first removed and then biopsied. I was given no physical therapy instructions, no offer of some kind of hormone replacement to stop the horrible symptoms that have developed since the surgery. Even though I was already menopausal, it has since come to my knowledge that our ovaries, uterus etc. still perform certain functions that help us get through our later years. We don’t even know today just what these organs continue to do after menopause and the totality of how they continue to influence our other bodily organs, including the thyroid gland.

Most of the following symptoms began about a year after my DaVinci hysterectomy and oophorectomy and include:

  • Varicose veins
  • Constant constipation
  • UTIs
  • Pain throughout my torso that is elicited by just a light touch
  • Extreme dryness
  • Extreme mood swings
  • Suicidal thoughts
  • Cognitive difficulties
  • Serious depression
  • Unexplained weight gain unresponsive to diet/exercise
  • Huge growth of breasts
  • Constant backache from the “apron”-a horizontal lump of flesh and drop of the abdominal structures from the cutting of suspensory ligaments and muscles
  • Vision problems with extreme dry eyes
  • Panic attacks
  • Occasional loss of balance
  • Sexual difficulties
  • Nerve tingling and pain
  • Severe pain in both lower legs from calves to ankles with no obvious source
  • Joint Pain
  • Painful lipomas on upper thighs
  • Movement of section of lower colon down to the pelvic floor. This sometimes necessitates manually pushing it back into place in order to complete a bowel movement.

I live with constant fear of cancer on a daily basis. It has made my life miserable, increased my depression tremendously and has resulted in a number of suicidal ideations which I don’t tell anyone about because I don’t want to be put (again) in any kind of mental institution or subjected to the criminal like treatment I received while on suicide watch at the medical center. Never.

Absolutely NONE of the above effects were ever mentioned as possible outcomes from the hysterectomy/oophorectomy surgery. My life has been drastically changed for the worst. I refuse to go back to any gynecologist and/or oncologist because the very thought causes me extreme anxiety. From the lack of empathy, post-op care and refusal to give me my proper medication in the hospital, the rupture of blood and ensuing pain from treatment of the hemorrhage, I cannot bring myself to let a doctor touch me again.

I Was Railroaded

I feel as though I was railroaded from that first visit to Dr. C’s office. The da Vinci robot was marketed to me as though it were some type of miracle device. I was never told about some of the problems that have since been associated with this type of robotic surgery, and that I was used as part of a money making scheme despite the fact that the rest of my life would be changed forever.

Regardless of my objections, I believe their insistence in having a mammogram after the biopsy procedure violated my right to refuse any and all treatments. I am concerned that all the radiation I received between the mammograms and the biopsy will have deleterious effects on the rest of my life.

The fact that heart disease is widespread throughout my immediate family and my diagnosis of Reflex Sympathetic Dystrophy should have been sufficient to warrant serious consideration regarding this procedure and whether or not I was truly a candidate for it. Being thrown into isolation for just expressing my fears and being treated like a hard core felon was unnecessary and resulted in extreme mental stress and anxiety. I feel I was a victim of a system which saw a means to make money without any regard for other approaches to treatment or the quality of life that would be lost forever. All courtesy of an uncaring and greedy medical establishment that believes that our life producing organs are of little to no consequence while there is money, lots of it, to be made through the use of scare tactics and the “it’s always been done this way” approach when certain types of (potential) cancer is found. In other words, we are dispensable when it comes to increasing the bank accounts of all involved except, of course, the victimized patient.

© October 2015 Sharon A. Hutchinson

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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.

I support Hormones MatterTM 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

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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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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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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

 

 

 

Related posts:

hysterectomy consent outcomesHysterectomy Experiences: Misinformation and Lack of Consent hysterectomy consequencesThe Long Term Repercussions of an Unneeded Total Hysterectomy

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