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The Long Term Repercussions of an Unneeded Total Hysterectomy

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I have always preferred natural processes. I had four natural births using Lamaze technique. I breastfed. I was a registered nurse. I knew my ob-gyn doctors for years. I never expected my life to take a sharp and unnecessary turn for the worse, but it did, after I had, what was an essentially unneeded hysterectomy with oophorectomy.

A Total Hysterectomy for a Benign Ovarian Cyst

In 1990, I was 39 years old. I was physically active, I worked out daily. My blood pressure always in the 110/70 range. I scheduled my annual exam for mid March. My cycles were regular. I never had a suspicious pap smear. A couple years previously, however, I noticed some pain on ovulation. I asked the doctor if I might have endometriosis. She said she couldn’t find any evidence on exam.

My appointment was a shock. She found a mass near my right ovary. I was scheduled for an ultrasound. The ultrasound showed a 4cm mass.

I returned to the doctor with my husband. She said the mass was likely benign, but it should be removed. She asked if we planned any more children, we said no. She then recommended that I should have a total hysterectomy and my ovaries would also be removed (TAH-BSO). Her reason was that I might have future masses. She said I was in great shape, that I shouldn’t have any weight problems. She would do a Pfannenstiel incision (bikini cut) and it would fade to a small light scar. I was shocked, my mother was going through chemotherapy for cancer. What if I had another mass later that would be cancerous!

We scheduled surgery in two weeks. She gave us the ACOG hysterectomy brochure. I talked to a couple of friends that had the surgery. Not much to it, just rest a lot after surgery. They seemed fine, and hoped I would too. I called my doctor with a few questions, how will I feel after surgery and how might it effect sex. She said the Premarin would keep me feeling just as my natural estrogen has done.

Now the date was closing in, and my doubts were rising. I was busy with my four children, age 9 to 17. I read the ACOG brochure, it seemed too simple. The day before surgery, I asked my husband if we could go to the bookstore to see if we are missing something. He felt we had ample information from the doctor and friends, and yes, the ACOG brochure. We were both nervous. My husband didn’t want to lose me should I not have surgery. I was nervous about my future. My gut feeling was not to do it, but my brain told me that I don’t want a worse situation, if I don’t have the surgery. It haunts me to this day, I had that last chance to learn the truth and I did not take it.

A Total Abdominal Hysterectomy and Bilateral Salpingo Oophorectomy

The surgery was scheduled for April 5, 1990 at 1pm. I was terrified. My husband was so scared, he barely spoke to me. When I woke up in the recovery room, I felt a large dressing on my abdomen. I told the nurse “I just want to go home.” The doctor came in Saturday morning. She told me she found a lot of endometriosis. She detailed how much of it she cleared out. She said I would never have to deal with it again.

I went home Monday, I felt pretty good. I had a lot of abdominal swelling, nut that night I got up to go to the bathroom. It was then when I broke down and cried. Two weeks later, I took a good look at my abdomen and saw the horrible swelling over the incision. I showed it to my husband and he reminded me that it should take about six weeks to heal. He was very quiet and distant since the surgery.

I went to the doctor and she was startled when she saw my abdomen. She said it should be better in the coming months.

Learning the Truth

I was frustrated, I went to a bookstore to search what happened. I thought it was a hysterectomy issue. I found Hysterectomy: Before and After by Winnifred Cutler. As I glanced through the pages, it was a sharp contrast to the ACOG (sales) brochure. This was the information I needed BEFORE surgery! I began to tear up, I bought the book and went home. I could not understand why the doctor and ACOG would not inform women of these after effects. Now my abdomen problem was the least of my problems.

I asked my husband to read the book. He did but maintained the doctor gave us all the information we needed. I felt betrayed by everyone I had believed and trusted. No one had been honest with me. At that point, I was prescribed Prozac.

My post-op appointment was tense. I told the doctor that I had numbness in my right thigh, no response. I had insomnia, breast pain from the high dose of Premarin. There was no improvement with my abdomen. She told me “Just don’t look in the mirror”. By that time, my husband knew just how these doctors work. He had no doubt that the surgery was not necessary.

Hysterectomy Consequences

In March 1991, I went to another state and had a mini-abdominoplasty for scar revision. When the cosmetic surgeon saw the scar he said “That incision was closed unevenly!”.  The three cosmetic surgeons in my area never hinted that my gynecologist was at fault. So, after my surgery I submitted my records from him with before and after photos. Anthem reimbursed me for the abdominoplasty.

I felt better about my appearance, but the after effects of hysterectomy and ovary loss were beginning to pile up. I could not have the internal orgasms I had before. Still had insomnia, thigh numbness, and problems with Premarin. I wasn’t myself, I had anger and rage. I was tired, physically exhausted.

I was on Zoloft for a year and gained nearly 60 pounds. I finally ‘quit’ doctors. In 2001, I became a vegetarian. I lost most of my weight, but I still am 30 pounds over my ‘intact’ weight. I eventually could not wear contact lenses due to eye dryness. I still have episodes of rage and anger, panic attacks and on going depression. I have low libido, and few slight orgasms, along with bad back pain, knee pain, sciatica, and hip and joint pain.

I was 5’4 and now measure 5’2. I can only get one finger (normal is 2 to 3 fingers) between my ribs and pelvic bones due to post hysterectomy skeletal changes. In February 2017, I was diagnosed with bladder cancer. Fortunately, it was low grade and manageable. It bothers me to ‘need a doctor’.  There are studies linking hysterectomy and ovary removal to both bladder cancer and renal cell carcinoma.

Where I Am Now

I am now 67. I still grieve my organ loss and the negative impact on my life. I am trapped in a body that is not mine. I recently looked at a picture of me at one year old. I wondered if that little girl would have known her life and happiness would end in 38 years.

  • I could have gone to a bookstore to research the surgery the same day I scheduled it.
  • I would have had a second, third or fourth opinion.
  • I should have listened to my gut instinct.

Research, research and research. You can’t undo the damage! Don’t let the opinions of others cost you your well-being. You are the one that has to live with the consequences! They do not!

Share Your Hysterectomy Story

If you have a hysterectomy story, publish it here on Hormones Matter. Every story counts. Send us a note for more details.

We Need Your Help

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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Image by 412designs from Pixabay.

This story was published originally on May 16, 2018. 

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Tank Estradiol and Lose Metabolic Flexibility: Pitfalls of Lupron and Oophorectomy

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Over the last several weeks, I have been looking at the role of estradiol in mitochondrial health. In the first post Hormones, Hysterectomy and the Aging Brain, we learned that estradiol depletion wreaks havoc on brain mitochondria turning them into misshapen donuts and blobs. Digging a little deeper, the next post (Lupron, Estradiol and the Mitochondria) pondered the connection between estradiol-depleting drugs such as Lupron, other Lupron-like drugs, and the devastating side effects that often follow suit. Could Lupron-mediated mitochondrial damage be at the root of these side effects? Quite possibly?  A question that remains is how. In this post, I will be digging even deeper into the role of estradiol in mitochondrial functioning, especially its role in something called metabolic flexibility.

A note of caution, while I focus on estradiol, the mitochondria, and what happens to health when we remove estradiol pharmaceutically via Lupron or surgically via oophorectomy, it is important to remember that estradiol is not the only hormone synthesized in the ovaries nor are the ovaries the only hormone-producing tissues. Moreover, the chemical castration induced by Lupron and other medications or via ovary removal disrupts and diminishes the synthesis of a myriad of hormones. Estradiol is simply where most of the research is focused, and so, it is where I too must focus, at least for the time being.

Steroid Hormones and Metabolic Flexibility: A Critical Factor in Post Lupron and Post Oophorectomy Ill Health

Steroid hormones regulate metabolic flexibility at the level of the mitochondria. Estradiol, the most frequently studied among the steroid hormones, plays a pivotal role in determining how food fuel is converted into cellular fuel or ATP.  When we eliminate estradiol with medications such as Lupron and other GnRH agonists or antagonists, or when we remove a woman’s ovaries, depleting her primary source for estrogen synthesis, metabolic flexibility diminishes significantly.  With the lack of metabolic flexibility comes several health issues, some noticeable, like weight gain, and others less noticeable, at least initially, like cardiac and neurodegenerative diseases. A common component of each of these conditions is mitochondrial dysfunction. Mitochondrial dysfunction can be initiated and accumulated via a number of mechanisms and over time, so estradiol is not the only variable, but it is a key factor that is often ignored.

Mitochondria

Mitochondria are the cellular powerhouses that consume oxygen and transform the foods we eat into a currency that cells can use (ATP) to perform all of the intricate tasks needed for survival and health. Mitochondria are also the site of steroidogenesis (steroid synthesis), immune signaling, and all sorts of other functions that determine cellular life and death. When you think about it, how well the mitochondria perform these tasks affects health at every level of organismal physiology. Without the appropriate amount of mitochondrial energy/ ATP, cell function becomes deranged, and ultimately, grinds to a halt. When that happens, disease is imminent. Indeed, genetic perturbations of mitochondrial function are some of the most devastating diseases known to medicine.

One has to wonder, what happens when we perturb mitochondrial function from the outside in – via toxicant exposure or by eliminating critical hormones or other co-factors such as nutrients that are necessary to mitochondrial operations? Worse yet, what if an individual with unrecognized genetic defects in mitochondrial functioning faces additional mitotoxicant exposures; what then? Complex, multi-system disease – that’s what. I would argue that mitochondrial dysfunction represents the final common pathway, a convergence point, connecting an array of seemingly disparate disease processes. Mitochondrial metabolism, and specifically, metabolic flexibility, may be at the heart of the derangement, with estradiol, and likely other hormones, in the driver’s seat.

Metabolic Flexibility: Adapt and Survive

When we think of stress and flexibility in general terms, it is easy to recognize that the more flexible one is in his/her behaviors or coping mechanisms, the easier it is for one to respond to, and survive stressors. Flexibility means that options exist for when everything hits the fan. Imagine if there were no options or if you had to respond to each and every stressful event in your life using exactly the same behaviors or response patterns. You would not get very far. The same holds true for cell behavior, and more specifically, mitochondrial behavior. The mitochondria need options to respond to the differing needs of the cells that they supply with energy. If those options become limited in any way, the mitochondria become less effective. They produce less energy, scavenge fewer oxidants (toxicants), and when stressors present, cannot easily adapt. In fact, the more inflexible the mitochondria are forced to become, the less likely they, and the cells, tissues, organs, and organism within which they reside, will survive. Estradiol is integral to mitochondrial flexibility. Remove the estradiol and the mitochondria become less metabolically flexible and less able to respond to the demands of a changing environment.

Estradiol Equals Increased Mitochondrial Efficiency and Decreased ROS

Estradiol maintains metabolic flexibility via two important mechanisms: increased mitochondrial efficiency and ROS management. With the former, estradiol regulates metabolic flexibility by altering the expression of genes that control the enzymes within the fuel conversion pathways. It is a complex algorithm of responses, with some proteins upregulated and others downregulated. The net result, however, favors increased efficiency in ATP production by maximizing metabolic flexibility or adaptability to the environment.

With the latter, estradiol, along with progesterone, manage the clean-up tasks inherent to any energy production process. In effect, estradiol manages ROS both on the front end and the back end of mitochondrial ATP production. On the front end, increased metabolic efficiency and flexibility equals fewer ROS byproducts. On the backend, estradiol cleans up the byproducts of processing -ROS – and tempers the damage these byproducts can cause.

Estradiol, Pyruvate, and ATP

Of particular interest to our work here at Hormones Matter, estradiol upregulates a set of enzymes called the pyruvate dehydrogenase complex, PDC. The PDC, responsible for converting glucose into pyruvate, is the first step in the long process that nets multiple units of mitochondrial ATP. The PDC is key to carbohydrate metabolism and more recently has been linked to fatty acid metabolism, making this enzyme complex central to mitochondrial energy production. Diminished PDC derails mitochondrial functioning, producing serious diseases. Children born with genetic pyruvate dehydrogenase deficiency suffer serious neurological consequences and rarely live to adulthood.

Importantly, the PDC (like all of the enzymes within these cascades) is highly dependent upon nutrient co-factors to function properly. Thiamine and magnesium, are critical to the PDC complex. Since PDC function demands thiamine, children and adults with thiamine deficiency also suffer significant ill-health, ranging from fatigue and muscle pain, to disturbed cognitive function, disrupted autonomic function affecting multiple organs, psychosis, and even death if not identified. Thiamine deficiency is most well known as a disease associated with chronic alcoholism but has recently begun re-emerging in non-alcoholic populations relative to medication and vaccine reactions.  Many medications and environmental variables deplete thiamine and magnesium, diminishing mitochondrial function significantly, by way of pyruvate.

Along with nutrient co-factors, estradiol is critical for pyruvate. Estradiol upregulates the expression of the enzymes that make up the PDC (in the brain). If estradiol is reduced or blocked, mitochondrial ATP production will take a hit. If estradiol is blocked in an already nutrient-depleted woman, the first step in mitochondrial fuel conversion would take a double hit. One can imagine the consequences.

In light of the direct role that thiamine, magnesium, and other nutrients play in the cascade of reactions required to produce ATP, can we maximize mitochondrial functioning with nutrients to compensate for the mitochondrial damage or deficiencies likely to occur post oophorectomy or as a result of GnRH agonist or antagonist drugs, like Lupron? I can find no research on the subject, but it is certainly a topic to explore given the millions of women already suffering from the mitochondrial damage induced by Lupron and/or pre-menopausal ovary removal. Even without the necessary research, correcting nutrient deficiencies and dietary issues should be undertaken for general health.

Another question in need of exploration, if we maximize mitochondrial functioning, does that then increase steroidogenesis in other endocrine glands? A section of the adrenal glands called the zona reticularus, for example, produces a complement of hormones similar to those of the ovaries. In postmenopausal women androgens, precursors for estradiol, produced by the adrenals account for a large percentage of total estradiol production. Could we take advantage of that to help stabilize circulating hormones?

Finally, beyond the nutrient requirements for mitochondrial ATP production, enzymes throughout the body, even those involved in post-mitochondrial steroid metabolism, require nutrient co-factors to function properly. Could we maximize those enzymes for more efficient steroid metabolism to net sufficient estradiol to maintain mitochondrial function?

What about Natural Declines in Estradiol?

It is not clear how menstrual cycle changes in estradiol affect mitochondrial functioning or how the postpartum decline in pregnancy hormones affects mitochondria. One would suspect there are compensatory reactions to prevent damage, but this has not been investigated. In natural menopause, however, researchers have noted that some form of compensation occurs as estradiol declines and, at least for a time, and in rodents, mitochondria maintain efficient production of ATP. In contrast, no such changes are noted with premature menopause or oophorectomy.

Also not investigated sufficiently, is the impact of chronic synthetic estrogen exposure on mitochondrial functioning. In other words, what are the effects of oral contraceptives, HRT, and the growing list of environmental endocrine disruptors, on mitochondrial ATP production? Since these compounds bind to estrogen receptors and displace the endogenous estrogens like estradiol, some evidence suggests endogenous production of estradiol is reduced. Do the mitochondria respond also by downregulating estrogen receptors or by some other mechanism?  Short-term, animal research suggests that supplementing 17B estradiol post oophorectomy reduces mitochondrial damage. In research in humans, where synthetic estrogens are used, results are less clear and longer-term studies do not exist beyond the broad brush strokes of epidemiology.

Metabolic Flexibility and Tissue Type

One of the more interesting aspects of estradiol’s role in metabolic flexibility is that it is site or tissue-specific and may point to novel therapeutic opportunities. Since different cell types, in different parts of the body, prefer different fuels for power to survive, when we eliminate estradiol from the equation, mitochondria from different tissues or organs respond differently to the lack of flexibility. Perhaps, we can utilize the information about fuel requirements to design diets that compensate for diminished metabolic flexibility.

Heart Cells. I’ve written about this research previously, not fully understanding the implications. Estradiol allows cardiomyocytes (heart cells) to switch from their preferred fuel of fatty acids to glucose during stressors such as heart attacks (and theoretically during any stressor like exercise). That ability to switch fuel types is protective and allows the cells to survive and heal. It may explain why women are more susceptible to heart damage post-menopause when endogenous estradiol declines. This may also point to a pathway for post oophorectomy and post Lupron declines in normal heart function.

Brain Health. Declining estradiol affects brain mitochondria differently. As I noted in a previous post, without estradiol, brain mitochondria become progressively less functional and misshapen. These structural changes impair mitochondrial ATP production. Unlike the heart, however, the brain prefers glucose as its primary fuel source. Estradiol appears to enhance glucose uptake from the periphery and across the blood-brain barrier. When estradiol is absent, brain glucose uptake diminishes significantly (in rodent studies), leaving the brain perpetually starved for glucose.

We know from brain cancer research, that with declining brain glucose, secondary fuels can kick in, but only when the mitochondria have sufficient flexibility to switch. For example, mitochondrial fuel flexibility is critical to battling brain tumors. Under conditions of stress and when brain glucose concentrations are low, healthy mitochondria can readily transition to ketone bodies for energy, at least in vivo. The transition from glucose to ketone bodies is believed to be an evolutionary adaptation to food deprivation allowing the survival of healthy cells during severe shifts in the nutritional environment. Estradiol appears to be key in maintaining that flexibility.

Weight Gain and Fat Accumulation. Post-menopausal, post-hysterectomy, and oophorectomy weight gain are well established research findings. Anecdotal complaints of Lupron weight gain are also common. These findings may be related to derangements in metabolic flexibility mediated by the relationship between estradiol and mitochondrial functioning. The increased lipid or fat accumulation in skeletal muscle though associated with impaired insulin-stimulated glucose metabolism may be related to the reduced capacity to adjust to a changing fuel environment. More specifically, weight gain may represent a declining ability to utilize fats effectively as a mitochondrial fuel source, possibly via a derangement in a mitochondrial channel responsible for shuttling fats and cholesterol into the mitochondria for processing. When the mitochondria become less flexible, a channel called the TSPO, shuts down, disallowing fats that would normally be shuttled into the mitochondria and processed for ATP (and steroid hormones), from entering. Instead, they are stored peripherally in adipocytes. I wrote about this in detail here: It’s All about the Diet: Obesity and Mitochondrial Dysfunction. It is possible in estradiol-depleted women that TSPO downregulation is a compensatory reaction to diminished metabolic flexibility.

It is also conceivable that the lack of brain glucose, as discussed above, leads to overeating and, more specifically, cravings for sugary foods. This would be a logical compensatory reaction to bring more fuel to the brain; one likely meant only for the short term and that when held chronically begins the cascade of other metabolic reactions known as obesity, diabetes, and heart disease. Perhaps, just as fat storage becomes a survival mechanism when mitochondria can longer process it effectively, the craving for sugar in estradiol-deprived women is also a survival mechanism.

Finally, adipocytes can synthesize estradiol. It is conceivable that in response to declining estradiol concentrations, the body stores fat to produce more estradiol.

Final Thoughts

Central to mitochondrial dysfunction, whether by genetic predisposition or environmental influence, is the inability to efficiently produce ATP (the fuel that all cells need to survive) and to effectively manage the by-products of fuel production and other toxicants. Estradiol plays a huge role in both of these processes. Eliminate estradiol and mitochondrial functioning becomes less efficient and less flexible initiating cascades of chronic and life-altering conditions. This suggests the ready application of medications like Lupron that deplete estradiol or the prophylactic removal of women’s ovaries is misguided at best, and dangerous at worst.

We Need Your Help

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, and like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

Image by Triggermouse from Pixabay.

This post was published originally on Hormones Matter on February 11, 2015. 

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Hysterectomy’s Best Kept Secret: Figure Changes

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There are many misconceptions about the after effects of hysterectomy. There are a number of reasons for this. First and foremost, gynecologists are not honest with women. They present hysterectomy as merely the end of our ability to have children. A bonus is no more periods. Secondly, their professional society, ACOG, has a lot of influence on government and the media. Therefore, much of the information women find also misrepresents hysterectomy as benign. And last, but not least, most hysterectomized women fail to share the after effects. So it is no wonder secrecy abounds.

Over the years, I have written about many of the deleterious after effects of hysterectomy here, here, and here. Read the comments on any of these articles and see the thousands of women who have suffered. Among the least well recognized of these effects, however, are the figure changes that develop post-hysterectomy; changes that are related to both the anatomical effects of the surgery itself and the hormonal decline that ensues. Figure changes are hysterectomy’s best kept secret.

How Hysterectomy Changes a Woman’s Figure

How does hysterectomy change a woman’s figure? The “bands” (medically known as “ligaments”) that suspend the uterus are also the support structures for our midsection. They keep the spine, hips, and rib cage where they belong. The severing of these ligaments causes our entire torso to collapse. The hips widen, the spine collapses, and the rib cage drops onto the hip bones. This causes a shortened and thickened midsection, protruding belly, and a loss of the curve in our lower backs.

These unnatural changes lead to back and hip problems, loss of mobility, poor circulation in extremities, and chronic pain. Nerve injuries are another source of pain and loss of mobility. “Hysterectomy cripple” is a term from an old gynecology textbook that reverberates in my head. Two of my articles and readers’ comments on this best kept secret can be found here and here. Some women also talk about these changes here.

Other Harms of Hysterectomy

The uterus is essential for a woman’s whole life to keep her healthy. So are the ovaries. And the Fallopian tubes. We were not made to be disassembled. Studies prove it. Yet gynecologists continue to treat the female sex organs as disposable.

Although hysterectomy’s best kept secret is figure changes, there are a number of other harms. Hysterectomy’s effects on the bladder and bowel are explained here. Many women report sexual dysfunction including loss of desire. Feelings of emotional emptiness are common. So is chronic fatigue. Even the ovaries (vital endocrine glands) don’t escape unscathed. Their impaired function causes a whole other set of problems related to the diminished supply of vital hormones. For many, these life altering changes cause break-ups of romantic relationships and families. The effects can also end careers leading to financial hardship and shattered lives. The societal effects are far-reaching.

It is one thing to have cancer and have to live with these trade-offs. But over 90% of these surgeries are unnecessary since less than 8% are done for cancer.

Why Do We Not Know About the Figure Changes?

How can we not know that hysterectomy causes figure changes? Shouldn’t we have noticed this in women who had hysterectomies? Yes and no. Women gain an average of 25 lbs. in the first year after hysterectomy according to the HERS Foundation. That can certainly mask figure changes. Not only that, the torso collapses gradually so is not immediately discernible. And women tend to dress differently in an attempt to hide their altered figures. For women we didn’t know before their hysterectomies, we have no “before” view. Conversely, how much does any woman really critique other women’s bodies anyway? Not so much. Nor can we count on women to divulge these changes just as they fail to share other effects. Proof of this association does not require studies as it is evident from diagrams of the female anatomy. Hence, the reason hysterectomy’s best kept secret is figure changes.

So Much Despair

I had a hysterectomy 13 years ago at age 49. The effects were immediate and severe – physically, mentally, and emotionally. I never could have imagined that a person could age so quickly or feel that their very heart and soul were ripped out! You can read my story here. I quickly realized that my gynecologist of 20 years was dishonest about the consequences. And my medical records show that he also lied about my diagnosis and treatment options.

The changes to my figure amplify the despair that has plagued me since that fateful day. Like the author of the book Misinformed Consent, I cannot bear to look at myself in the mirror. And I shudder to think how much more height I will lose from my already small frame. Even more unsettling is the recent onset of hip and leg pain and midsection discomfort. I fear that reduced blood flow is causing my hip joint to deteriorate (known as “avascular necrosis” or “osteonecrosis”). I know some hysterectomized women who had hip replacements in their 40s or 50s for this reason. Great… more worries about my future health. The thought of any medical treatment, especially surgery, terrifies me!

The Harm of Female Organ Removal

There is long-standing evidence of the harms of female organ removal. Yet, nothing is being done to stop the abuse. It affects almost half of U.S. women. The states’ medical boards don’t care, and neither do legislators. Even women’s health organizations don’t care. Their platform is “reproductive choice.” I guess I was naive to think any of them would care. Then along came the #MeToo movement. I thought this was our opening to make our voices heard. But no. People don’t seem to view this as a form of sexual abuse or harassment. Evidently, perpetrators of surgical crimes against women get a free pass.

The ACOG works hard lobbying Congress and the media to keep it that way. One only need look at the Advocacy menu on their website. Hysterectomy is a big money maker. So maximizing these surgeries and denying the harm is in gynecologists’ best interest. The recent increase in resident minimum requirements from 70 hysterectomies to 85 is evidence of this. There is no training for myomectomy, or removal of fibroids, despite fibroids being a common reason for a hysterectomy. A gynecologist petitioned the ACOG to mandate myomectomy training, to make this uterine-sparing option more accessible. The ACOG rejected his petition. Clearly, the Ob/Gyn specialty puts profits before women’s health.

One has to question why insurance companies continue to authorize and pay for so many unwarranted hysterectomies. What documentation are gynecologists submitting to get these authorizations? My insurance company refused to divulge what my gynecologist submitted to get authorization. I had an ovarian cyst yet my medical records show authorization for a “hysterectomy.” There was absolutely nothing wrong with my uterus or other ovary as proven by pre-op imaging and post-op pathology. He should have removed only the cyst.

Protect Yourself

Don’t allow yourself to be deceived or bullied by a gynecologist. If you do go into an operating room, protect yourself. Modify the consent form to explicitly state what can and cannot be done and removed. Have the surgeon(s) sign off on all revisions.

You certainly don’t want to endure a hysterectomy’s figure changes or any of the other negative effects. The HERS Foundation and Ovaries for Life are good resources for understanding the lifelong importance of the female organs.

We Need Your Help

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, and like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image by Tayeb MEZAHDIA from Pixabay.

This article was published originally on June 13, 2019. 

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Hormones, Hysterectomy, and the Aging Brain

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Everything slows down as we age. For some lucky folks, aging happens gracefully with nary a disease in sight. For others, the springs start popping off around 40 and by the time we reach ‘old age’ our bodies and brains are barely functioning. Arguably, diet and lifestyle have something to do with how well or how poorly we age, and of course, genetics contribute mightily, but beyond that, we really have no idea what’s happening with aging.

Sure, there are all sorts of physiological systems that become progressively less efficient over time. Wear and tear plays a huge role, but the relationships aren’t linear. There are always outliers. There are folks who, on a diet of smokes and scotch, live well into their nineties with all their faculties intact. Then there are the poor souls who are prodigiously healthy, who eat right and exercise, but yet, whose bodies seem set on wide-scale destruction, where the slightest change in lifestyle risks sending them into a morass of cascading illness. Somewhere in the middle, the rest of us live – sometimes healthy, sometimes not – aging in fits and spurts. What the heck?

From a physiological standpoint, aging is marked by two opposing factors: decreasing hormones and increasing inflammation. Where they intersect, age-related illnesses seem to accrue. Called endocrine senescence, researchers have long noted a relationship between declining hormones and declining immune function (marked by increased and inefficient inflammatory responses). Might there be some truth to the ever-young, hormone peddlers? Could hormones be the key to offsetting the age-induced inflammatory cascades? Possibly.

Hormones and Mitochondria

I just finished writing an extensive paper on acquired mitochondrial illness. Throughout the research, I stumbled upon a short essay linking mitochondrial structure and function to estradiol. More specifically, the rapid estradiol decline common post oophorectomy (ovary removal), fundamentally alters the shape, and ultimately, the function of mitochondria. Researchers found that a rapid decline in estradiol evokes significant damage in the brains (and presumably other organs) of female monkeys. Additional studies using estradiol starved mitochondria from female rodents showed similar shape alterations and consequent declines in brain bioenergetics. Interestingly though, with natural menopause, where estradiol declines more gradually, no such structural changes were observed. In fact, with the more gradual decline in estradiol, the mitochondria appear to increase their production of the lifesaving ATP as a compensatory reaction.

All Paths Lead to the Mitochondria

Recall, from previous posts, that mitochondria take dietary nutrients and oxygen, and change them into the chemical energy (ATP) that is used by every cell in the body. Without ATP, cell function grinds to a halt. So, anything that derails the mitochondria, imperils cell function and initiates cell death. Lack of nutrients, sedentary lifestyle, pharmaceutical, and environmental toxicants, all derail mitochondrial function. Cluster too much cell death together in one tissue or one organ and disease happens. Since mitochondria are in every cell of the body, mitochondrial damage induces disease broadly, but especially in regions with high energy demands like the brain, the heart, the muscles, and the GI system.

The cardinal symptoms of mitochondrial damage include fatigue, weakness, muscle pain, and depression. These are followed by dysregulated systems; a GI system, for example, that overreacts or under reacts or temperature dysregulation (hot flashes, cold insensitivity), insulin/sugar dysregulation, emotional volatility, migraines, seizures, syncope (fainting), and so on. It’s not a pretty picture.

In addition to providing the fuel for cellular respiration, e.g. life, mitochondria control a host of other functions, steroidogenesis is one of them. This means that if we fail to feed the mitochondria or hurl insults at them, hormone dysregulation is inevitable. Ditto for inflammation, as the mitochondria regulate inflammatory cascades. Every woman knows when her hormones are out of whack. Well, now we know that hormone dysregulation emerges from the mitochondria.

From a systems perspective, consider the mitochondria as central regulators of organismal health. Mitochondria both send and receive signals from all over the body and then adjust their functioning accordingly. With their role in hormone synthesis, we would expect there to be cross-talk between the mitochondria and circulating hormones. Indeed, there is. All steroid hormones have receptors on the mitochondrial membranes. When hormone concentrations increase or decrease, the mitochondria will initiate the synthesis of new hormones and send signals throughout the body to adjust other hormone-responsive systems as well.

No Estradiol Equals Misshapen Mitochondria: Donuts and Blobs

Removing the ovaries starves the mitochondria of one of its many feedback mechanisms and damages the brain mitochondria in the regions of the brain responsible for executive function and memory – the frontal cortex and the hippocampus. The mitochondria change shape, from spheres (healthy) to donuts and blobs, which represent early and late-stage mitochondrial damage, respectively. Misshapen mitochondria cannot provide the energy (ATP) needed to perform critical brain functions such as neural communication or the antioxidant tasks needed to clean up toxicants. Neurodegeneration ensues. In layman’s terms, and in the early stages, brain fog and memory loss. Researchers believe that it is this loss of functional mitochondria that contribute to the onset of neurodegenerative disorders like Alzheimer’s and other dementias. And, this loss of function is precipitated by an unnatural loss of estradiol.

Ovary Removal is Common with Hysterectomy – Now What?

For the millions of women who have had their ovaries removed with hysterectomy, this presents a problem. Amid the myriad of other side effects associated with ovary removal, and perhaps, the root cause of these effects, we can add mitochondrial damage and brain mitochondrial damage, specifically. The rapid decline of estradiol, and other hormones, places many women at risk for neurodegenerative disorders like Alzheimer’s. How could this be mitigated?

In animal research, hormone replacement with 17B – estradiol immediately after the ovaries are removed seems to temper the damage, at least in the short term. There are no long-term studies. Similarly, epidemiological studies in human women suggest hormone replacement immediately after open menopause and/or hysterectomy with oophorectomy reduces clinical symptoms associated with the diseases of aging – e.g. the cognitive decline of Alzheimer’s and other dementias. However, since the synthetic estrogens used pharmacologically are different compounds than those produced endogenously (and used in basic and animal research) and because there are no mitochondrial imaging or even mitochondrial function tests done with human females given hormone replacement, it is difficult to compare the two sets of literature.

Some data suggest that the use of synthetic estrogens damages mitochondria and further diminishes the synthesis of remaining endogenous estrogens (the adrenals continue to produce estradiol and other estrogens after the ovaries are removed). Women who have used synthetic estrogens such as those in oral contraceptives and hormone replacement therapies have lower concentrations of endogenous estradiol, estrone, androstenedione, testosterone, and sex hormone-binding globulin. Based upon the aforementioned research, the decline in endogenous hormones would suggest a commensurate derangement in mitochondrial structure and function, but there are no data either way. At the very least, caution is warranted when contemplating the use of synthetic estrogens, particularly in the current environment that is rife with estrogenic chemicals. There are no data on the use of ‘natural’ or ‘bioidentical’ hormones and human mitochondrial function. So, although the animal data are fairly clear, estradiol replacement begun early enough appears to offset the decline in endogenous estradiol, how this translates to human females is not known.

Other Hormones and Additional Pathways

A flaw common to most research in this field is the failure to address the other hormones involved in modulating health. Estradiol is but one of many estrogens produced endogenously. It is also one of many steroid hormones produced in the ovaries and regulated by mitochondrial function. How estradiol removal or add-back affects progesterone, the androgens, or even the glucocorticoids (cortisol) – is not known. Compensatory reactions are likely. Understanding how those reactions mediate mitochondrial function might determine a viable workaround for the depleted estradiol. The beauty of human physiology is a mind-blowing breadth and depth of compensatory reactions to maximize survival. So I would think, and this is purely speculative, that even if one has lost her ovaries, and even if estradiol treatment was not initiated immediately, or if synthetic estrogens were used instead, there should be other mechanisms to tap into and compensate for this loss. That is, there should be multiple pathways to help maintain mitochondrial function. What those are, I do not know, but they are worth exploring.

We Need Your Help

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, and like it, please help support it. Contribute now.

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Image created using Canva AI.

This post was published originally in January 2015.

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Share Your Hysterectomy Experience

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share your hysterectomy story

The hysterectomy and oophorectomy industry continues to flourish. There are over 600,000 hysterectomies every year. The oophorectomy rate is about 70% of the hysterectomy rate, some performed at the time of hysterectomy and others as separate surgeries. About 90% of these surgeries are for benign conditions (elective). These are merely estimates based on samples of inpatient data from short-term, acute-care, nonfederal hospitals along with hysterectomy and oophorectomy outpatient percentage estimates. According to the aforementioned publication, the rate of outpatient (ambulatory) hysterectomies increased from 14% in 2000 to 70% in 2014. Outpatient oophorectomies increased from 57% to 84% over the same time period. The Centers for Disease Control (CDC) reports only inpatient hysterectomies which is why hysterectomy rates are typically understated by the media. A 70% understatement is a gross misrepresentation and outpatient hysterectomies may now exceed 70%.

Hysterectomy is seen as panacea for a multitude of women’s health issues. Unfortunately, it is not, and yet, this perception that hysterectomy is a cure-all survives, largely because of false information from gynecologists, gynecologic oncologists, other medical professionals, hospitals, surgical centers, the media, and women who have had the surgery(ies).

The prevalence of hysterectomy and oophorectomy leads the public to mistakenly believe that a woman’s sex organs are disposable. In many cases, gynecologists fail to provide their patients with the necessary factual information to make an informed decision about these surgeries, leaving women and their partners to learn about the side effects after the fact. Some of the more commonly reported side effects include: bladder and bowel dysfunction, skeletal and figure changes, sexual dysfunction, emotional emptiness, and impaired ovarian function. Although some may believe these side effects are rare and thus rarely discussed pre-surgery, comments on these hysterectomy articles indicate they must be more common than many realize.

What makes these side effects even more troubling, is the fact these procedures are rarely needed. Women are coaxed into the surgery under the false pretense of cancer or pre-cancer or told it is their only or best option. Finally, many women’s organ(s) are removed despite having specifically told their surgeons that organ(s) should not be removed. Here is just one of those stories.

In light of the problems with hysterectomy, the HERS Foundation is collecting stories of post-hysterectomy problems. We are supporting that effort. If you would like to share your story, consider participating in the “In My Own Voice” project. To learn more, click here.

If you would like to share your story here on Hormones Matter, please contact us here.

Thank you in advance for sharing your hysterectomy experience.

We Need Your Help

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.

Yes, I would like to support Hormones Matter.

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Hysterectomy and the “C” Word

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hysterectomy cancer

I have connected with many women in the nine years since my unwarranted hysterectomy. I have been appalled and saddened by the number of women who were railroaded into hysterectomy and/or oophorectomy (ovary removal – castration) by being told that it was necessary. Some were misled into believing they had cancer or pre-cancer when they did not. Some were referred to oncologists unnecessarily to further instill fear.

The fact that only 2% of these surgeries are done for a cancer diagnosis and most pre-cancerous conditions are treatable without organ removal, something is certainly “rotten in Denmark.”

Gynecologic Cancer Statistics

According to U.S. government cancer statistics, the average woman’s lifetime risk of gynecologic cancers is rare. Specifically, statistics are:

  • Cervical – 0.7%
  • Endometrial – 2.7%
  • Ovarian – 1.3%

With these low rates of cancer as well as the organ-sparing treatments available for almost all gynecologic maladies including abnormal or precancerous cells (that may never even turn into cancer), why are surgeons removing so many female organs?

Using Cancer to Market Hysterectomy

With the prevalence of cancer scare tactics by surgeons and the media, women tend to focus on ridding themselves of the potential for cancer even though that risk is very low for all but a small percentage of women. This focus on the cancer aspect is oftentimes to the exclusion of considering the long-term adverse effects of losing the uterus and/or ovaries. Very few people encourage women to question their doctors. This is even rarer when the “c” word is used.

The Big C: Is it Cancer or Conspiracy?

With the cancer rates so low, one has to wonder whether the big C we all hear about, is cancer or something else. Based on all the research I have done and the many women with whom I have connected since my unwarranted hysterectomy and castration, I have concluded that the “C” isn’t about cancer at all. It is about conspiracy.

The Free Dictionary defines “conspiracy” as “An agreement to perform together an illegal, wrongful, or subversive act.” Let’s break down the definition of “conspiracy”:

  • “an agreement to perform together”

There are many players in the annual $17B hysterectomy and oophorectomy industry – the surgeons and their nurses and office staff, the anesthesiologists, the hospitals and their nurses and other staff, the medical device manufacturers (e.g., da Vinci robot), and indirectly the pharmaceutical companies that manufacture and market hormone “replacement” drugs and other drugs to treat conditions resulting from post-hysterectomy side effects.

  • “an illegal, wrongful, or subversive act”

A medical treatment that is procured through misleading or dishonest information and omission of facts from a doctor or other medical professional is, plain and simple, wrong. And the unnecessary removal of organs with vital, lifelong functions is a most egregious act which should be treated as assault and battery as well as fraud.

How else can one explain the removal of 1 in 3 women’s vital sex organ(s) by age 60 and 1 in 2 by age 65 with these very low cancer rates? And how else can one explain that 78% of women ages 45 to 64 lose healthy ovaries at the time of hysterectomy?

Prophylactic Ovary Removal with Hysterectomy: More Deadly than Cancer

What else would account for the fact that these damaging surgeries are a $17B industry despite the many medical studies showing the long-term harm? This article highlights the absurdity of pre- and post-menopausal prophylactic ovary removal due to the “higher risks of coronary heart disease, stroke, hip fracture, Parkinsonism, dementia, cognitive impairment, depression and anxiety in many studies. While ovarian cancer accounts for 14,800 deaths per year in the USA, coronary heart disease accounts for 350,000 deaths per year. In addition, 100,000 cases of dementia may be attributable annually to prior bilateral oophorectomy.” And post-hysterectomy ovarian failure which occurs at a fairly high rate would have these same risks. Although the heart disease fact sheet on the Centers for Disease Control and Prevention’s (CDC) website lists heart disease as the #1 killer of women, there is no mention of the link between female organ removal and heart disease. Nor does the CDC’s dementia fact sheet list it as a risk factor for dementia.

ACOG Says: Most Hysterectomies not Medically Necessary

A 2000 study showed that 76% of hysterectomies did not meet ACOG criteria and 70% were deemed unnecessary. An excerpt says “The most common reasons recommendations for hysterectomies considered inappropriate were lack of adequate diagnostic evaluation and failure to try alternative treatments before hysterectomy.” Another excerpt says “Hysterectomy is often recommended for indications judged inappropriate. Patients and physicians should work together to ensure that proper diagnostic evaluation has been done and appropriate treatments considered before hysterectomy is recommended.”

In other words, women need to proceed with extreme caution and not rely on their Gynecology specialists’ treatment recommendations. So who can women trust??

Women to Women “Support” for Hysterectomy Decisions? Maybe. Maybe not.

Can women count on other women who have had hysterectomies and/or oophorectomies to share the negatives? In my experience, not so much. This is likely due to a number of factors but primarily, if a woman believes the removal of her organ(s) was necessary, as many are led to believe, she is less apt to share the negatives because she assumes the surgery was necessary for her and must be necessary for other women. Even when the organ removal was truly her choice, the horrifying effects can be too much to bear, much less admit to others. It is difficult to admit when one makes a medical mistake, especially when there is nothing available to fix the mistake.

After I had my hysterectomy, the last thing I wanted to do was call attention to my severely thinning, dry, frizzy hair, my rapidly aging / sagging skin, and horrifying figure changes. I have since become outspoken and hope that the visible effects of having my organs removed have made an impact on those who know my situation. For those who did not know me or my situation, I am sure there were whispered questions “what happened to her?”

Post-hysterectomy, I experienced  personality changes. My vivacious, happy, social disposition changed drastically almost overnight to the exact opposite. I became a recluse, seldom talked, never laughed, and was suicidal with depressed and anxious thoughts. This was before any of the classic menopausal symptoms kicked in. These changes had to be obvious to my co-workers, friends, and family members. The loss of my sexual “energy” may have been lost on many but was very apparent to me (and my husband). Even though talk of sex and sexuality is all over the media, it is still somewhat taboo to share such intimate information. And who wants to admit that they have lost their sexuality? From my experience, it can be difficult to share the breadth and depth of symptoms experienced after the ovaries are removed and so, woman to woman support may not be as forthcoming as we might hope. You can read my unnecessary hysterectomy story here.

Post Hysterectomy Symptoms Develop Gradually

Another reason woman to woman support is not always helpful is that many of the negative effects of hysterectomy do not develop immediately, especially when ovaries are not removed. Women who have been suffering with severe and/or prolonged health issues prior to the hysterectomy, are happy to get relief and, therefore, tell others they were glad they had the surgery. Once the problems start stacking up, they may not want to reverse course and admit that their hysterectomy and/or oophorectomy was a mistake. Moreover, they may not associate new symptoms with the surgery, especially those that developed gradually or cropped up many months or years down the road. Regardless of the problems that led up to the surgery, it is human nature to justify our decisions and discount the negatives of those decisions.

Finally, many people (women and men) find it difficult to believe that a surgery that is so common can have such serious and permanent side effects. Why would these surgeries be so prevalent if they can cause so much harm? Don’t doctors take an oath to “do no harm?” When I was told I needed organs removed, I know my first thought was surely my doctor (one I had respected for 19 years) would not remove organs needlessly. Boy, was I wrong!

Hysterectomy Forums are not Entirely Balanced

You would think internet hysterectomy forums would give women ample information about the many negative effects and the gross overuse of hysterectomy and oophorectomy. Speaking out anonymously on a forum is “safer” than doing so in person, but for any number of reasons, balanced discussions regarding the risks versus the benefits of hysterectomy and/or ovary removal are rare on public hysterectomy forums.

Many women don’t seem to take the time to read old posts before proceeding to surgery. Instead, they post asking for input and tend to base their decisions on the responses they get. These opinions, along with their surgeons’ input tend to omit or gloss over the long-term effects of hysterectomy. In some cases, time constraints derail a woman’s ability to research her options. From my experience, surgeons tend to rush women into surgery.

Some hysterectomy forums exude camaraderie and sisterhood amongst the hysterectomy ranks. However, if your experiences are negative and you discourage hysterectomy, your voice is drowned out by all those encouraging hysterectomy, both ones who have had the surgery (many who are recently post-op) and ones who are considering or scheduled for surgery. Posts will be hidden or blocked if the staff considers them too negative or members or staff report your posts as “frightening.”

The hiding or blocking of posts does not align with providing women thorough discussion of hysterectomy risks versus benefits. In fact, hiding posts from women who have had negative experiences with hysterectomy and/or ovary removal, biases the forum in favor of organ removal. For women considering surgery, not seeing the potentially negative consequences can skew their decision making. Biased discussions, hidden or blocked posts also occur on surgical menopause forums. I was banned from a surgical menopause forum for talking about the anatomical and skeletal changes that develop post-hysterectomy, information women should have prior to making a decision. This article explains the post-hysterectomy figure changes.

C = Conspiracy

Clearly, conspiracy is much more at play than cancer when it comes to female organ removal. Buyer beware! Any woman considering a hysterectomy and/or oophorectomy should watch the HERS Foundation’s video of “Female Anatomy: the Functions of the Female Organs.” Yes, it IS frightening but wouldn’t you want to know the possible repercussions before consenting to something so permanent especially if you do not have cancer?

We Need Your Help

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

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This post was published originally in October 2014.

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Victimized by Medicine: Hysterectomy Without Consent

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victimized by medicine - hysterectomy

I don’t particularly like saying I’ve been “victimized” nor do I like thinking of myself as a “victim”. I never have. The truth is though, according to the Merriam Webster Dictionary, I have been victimized. Merriam defines victimized as follows: to treat (someone) cruelly or unfairly: to make a victim of; to subject to deception or fraud. Victim is defined as: a person who has been attacked, injured, robbed, or killed by someone else; a person who is cheated or fooled by someone else and someone or something that is harmed by an unpleasant event (such as an illness or accident).

In 2007, I was knocked out with Versed and surgically assaulted. I wrote about what happened to me here. The reason I use the word “assaulted” is because I did not consent to surgery – more specifically I did not consent to castration. Indeed, I was treated cruelly. I was attacked, injured, and robbed.

When there is no consent for surgery, it’s absolutely considered assault and battery. With over half a million women undergoing hysterectomy each year, it’s hard to imagine that there is informed consent in all of those cases – really hard to imagine. It would be bad enough if women were only up against hysterectomy and castration abuse, but sadly, there are many more ways women are being abused and victimized by medicine. You can read more about that here.

So what’s a victim to do? How does a victim start over and find purpose in her life again? Where exactly does a victim turn for help? How does a victim heal from the trauma? I suspect the answers to these questions might differ from one victim to another. The answers would also likely depend largely on the circumstances. And, while I can’t answer for other victims, I can certainly explain how I’ve managed to go on and even find purpose again.

One of the most important steps I took was to reach out. I know from experience that it is never a good idea to isolate oneself – although it is often human nature to do just that during times of trauma. For me personally, I knew that I needed to contact lawyers to see how I might go about pursuing a medical malpractice suit, since I did not consent to surgery.

I also contacted the police to see if filing criminal charges was an option for me. I found out it wasn’t because, according to the police officers I spoke with, it’s considered a “civil” case when a person’s been harmed by a doctor inside a hospital. More regarding how I feel about that another day though.

I reached out to local lawmakers and testified in both Indiana and Kentucky regarding hysterectomy informed consent laws or rather the lack of them. And last but not least, I reached out to other women who’ve been abused by medicine. Sadly, there are many – too many.

And while contacting lawyers, police, lawmakers, and other women made make me feel less like a victim externally, I still felt like a victim internally. I have never allowed myself to assume the role of victim and I didn’t want to do that in this case either. I searched my heart and knew what I needed to do. I needed to write. So, I created a blog site here and then a website here and eventually a Facebook page here. And, I’ve written a variety of articles for Hormones Matter as well.

The way I process, heal and communicate is through my written words. Ultimately, as negative and painful as undergoing unconsented hysterectomy and castration has been for me, it forced me to connect with and understand who I am at the deepest level of my being. When my former doctor took the violent actions he did against me, something so precious –so incalculable- was taken from me in that instant: my value and my worth – as a human being and especially as a woman. I had to dig deep to find myself again. I’m still digging…

As the anniversary of my surgical assault draws near on September 27, I can’t help but think about that day that changed my life, health and sexuality forever. I’ve asked myself over and over again why was I targeted for unnecessary surgery and why was I knocked out against my will, sliced open, and castrated. This is what I have concluded. During the two hours I was in surgery, I was nothing more than an object that happened to possess the pieces or body parts necessary to make money for that doctor and that hospital. Behind those surgical doors, I was treated as property (though never purchased), that my former doctor felt he had the right to touch and use for his own purposes.

During those two hours, I had no voice, no thoughts, no feelings, no soul, no mind, no emotions, no power and no potential. I only had a vagina and the life-sustaining organs that lived inside of it. And he felt entitled to that – entitled to take away my life-sustaining organs and my womanhood without actually knowing or caring anything about me. He violated me in the worst possible way one human being can violate another human being. That doctor ruined my life, my sexuality, and my health without even the slightest regard for how profoundly my life would change. Every dream I carried inside of me was crushed beyond recognition because of what he did with his scalpel.

If there’s one thing I’ve learned through this nightmare experience, it’s that I have to speak out about what happened and call things the way they are – even if that’s not necessarily what others are comfortable hearing and knowing.

I don’t sugarcoat what happened to me. I can’t. What was done to me was violent, shameful, wrong, immoral, unacceptable and downright evil. It was painful, hurtful, disrespectful, discriminatory, barbaric and criminal. I try to soften the trauma of what happened by reaching out to other women who’ve been victimized to let them know they are not alone in their devastation.

And, of course, my hope is to help women who’ve not yet been victimized know the truth about hysterectomy and castration that their doctors simply will not tell them. In other words, in helping other women, I’m taking the horror of what happened to me and I’m turning it into something of worth. I’m turning my pain into something I can at least live with and not lose my sanity completely.

I feel. I connect. I cry. I learn. I speak. I fight. I write.

The devastation I’ve endured in this situation is matchless to anything I have ever experienced before other than the loss of my two youngest children. There’s no way I can say it isn’t. At my weakest moments, I remember my strength. I remember that I have a voice. I speak and I speak loudly. I speak not only for my own sake, but for the sake of millions of other women. When I tell my story, I’m telling the story of all women who’ve been abused and victimized by medicine. Knowing I am helping someone else, helps me survive.

Speak Up! Speak Out!

I would love for more women to take a stand with me against the medical abuse of women. Please consider sharing your own story on the Hormones Matter site. Let’s connect and see what we can do together as one large voice!

We need your help.

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests, we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

Yes, I’d like to support Hormones Matter.

This post was published originally on Hormones Matter in September 2014.

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Endometriosis: The Struggle to Find Effective Care

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I have a horrible disease called endometriosis.  It has completely destroyed my life in every way possible.  I am 29 and going through menopause with no children and no chance of having my own children. My body is full of scars from multiple failed surgeries and from unbalanced hormones.

Endometriosis has caused me to feel like less of a woman and has made feel extremely insecure. It has taken all of my energy to focus on getting through the pain, rather than taking the time to enjoy life and figuring out who I am besides a woman with endometriosis. I have not been able to lead a normal life due to the extreme chronic fatigue and daily unbearable pain I have suffered since the age of 15.

Several Years of Misdiagnosis

At 15 I was misdiagnosed with irritable bowel syndrome (IBS), which complicated my chances of receiving an early proper diagnosis of my endometriosis. It started out with heavy painful periods, accompanied by washroom issues that kept me from school a couple days to a week at times.  It then escalated to stabbing, throbbing pains in my abdomen as well as a crushing pressure type of pain in my legs on a daily basis that would just drop me to my knees and render me incapacitated. The pain was so bad that just putting on and wearing clothes was painful. Just the slightest touch or brush of clothing or anything to my abdomen would increase the pain level.

I had several visits to the hospital due to immense pain that ended in the dispensing of unnecessary prescriptions related to IBS. I was not given the proper examinations or tests to determine my actual underlying problem. It was not until I was 18 and another regular visit to the hospital that they finally believed there was something else that was causing my pain. They had figured I was 5 months pregnant due to an extremely distended abdomen. Despite telling them it wasn’t possible because I had not been sexually active, they still gave me a pregnancy test, which did indeed come back negative. An emergency ultrasound showed an endometrioma cyst that was almost 9 inches in diameter containing blood on my right side and a 2 inch cyst on the left side. I had emergency surgery in which the larger cyst, my right ovary and tube were removed immediately.

Finally, a Diagnosis

I was diagnosed with stage 4 endometriosis. One of my many doctors had assumed that the endometriosis had been growing since puberty at the age of 9. Other doctors believe I could have been born with it. Once diagnosed, I went through every type of medical and alternative treatment, as well as failed surgeries, and failed cyst drainings.

My endometriosis kept coming back and started to cause even more damage. I ended up with another very large cyst on my left side. The cyst had become so large that it had physically pushed some of my organs out of place and had begun to crush others. I also had adhesions–web like tissue that had begun to bind my organs together and to the cyst.

Trying to Find Effective Care

I went through several doctors, who in the end had done all they could for me. They told me that they were not skilled enough to deal with my case, and so I was passed on to the end of the line in my city, which was cancer care.  They offered me a hysterectomy and removal of my last ovary, but not removal of all of my endometriosis, because they told me that was impossible to do. They told me that this surgery probably wouldn’t help, they said it was the only option I had left.

It was around this time that a friend and I had decided to start a support group because we felt so alone and frustrated with the lack of options and awareness in our province (Manitoba, Canada). We found out that there was a surgical method called excision that if done properly can remove most if not all of the disease and have little to no recurrence. This type of surgery was not offered by any surgeon in Manitoba.

Excision Surgery in Mexico

I decided to look into these specialists around the world. I ended up speaking with some in Canada, the U.S.,  and Mexico. I had been approved by Manitoba health insurance to see a specialist outside of Manitoba because of the severity of my disease. However, the wait was too long so I ended up going to Mexico instead. I had a 6 and a half hour excision surgery which resulted in the removal of my last ovary, but I did not need a hysterectomy and was able to keep my uterus. I have been pain free for almost a year now, but I am now dealing with the effects of surgical menopause at the age of 29. Even though the pain is gone I will constantly live with the damage that endometriosis has left me with.

Facilitating Support, Education and Awareness

I have been dealing with endometriosis symptoms and its effects for more than 11 years.  It wasn’t until a few years before my last surgery that I was able to form a strong support system. Knowing what it felt like to go through most of my journey misunderstood, alone and confused, I have vowed to spend as much time as possible spreading awareness, education, and bringing women together so that no one has to go through what I did alone.   I started an endometriosis support group in Manitoba with a friend of mine called W.O.M.E.N (Women of Manitoba Endometriosis Network).  Recently we have also come together with The Endometriosis Network Canada to have our very first awareness day in Winnipeg on May 7, along with 16 other cities across Canada.

From what doctors have told me, had I been diagnosed earlier and had the proper excision surgery I probably would have been able to have children, and would not have had to go through so much suffering and unnecessary  treatments. The pain of the disease may be gone for me but I will never be able to forget what is has done and taken away from me.

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