recovering from hysterectomy

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.

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Wide Awake: A Hysterectomy Story

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

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

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

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

That was my last waking memory.

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

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

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

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

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

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

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

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

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

My Websites and Social Media

Website: Hysterectomy Consequences

Blog: Hysterectomylies

Twitter: www.twitter.com/jiggaz31

Facebook: www.facebook.com/hysterectomyconsequences

change.org petition: Help Stop Unnecessary Hysterectomy and Castration

 

 

 

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