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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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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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Hysterectomy: Bad for the Heart and Much More

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A Mayo Clinic study has shown that hysterectomy without removal of ovaries increases the risk of heart disease. Women who had a hysterectomy before age 35 are at a particularly high risk. Specifically, their risk was 4.6-fold for congestive heart failure and 2.5-fold for coronary artery disease. But this association is not new. This 1981 study showed a 3-fold increased risk of heart disease after a premenopausal hysterectomy. This would include most women who undergo hysterectomy. This 1982 study and this one from 1985 cite the uterine substance prostacyclin as the likely factor in women’s heart health. Since about 45% of women have a hysterectomy, it is no wonder heart disease is the #1 killer of women!

Heart Disease: Just the Tip of the Iceberg

Hysterectomy is bad for much more than the heart.

  • Hormone changes. Hysterectomy impairs the function of the ovaries which are part of the endocrine system. Multiple studies have shown this including this one and this one. This would logically predispose hysterectomized women to the same increased health risks and accelerated aging of ovary removal (castration). According to numerous studies such as this one and this Mayo Clinic one, the risks of ovary removal include heart disease, stroke, metabolic syndrome, osteoporosis, hip fracture, lung cancer, colorectal cancer, dementia, Parkinsonism, impaired cognition and memory, mood disorders, sleep disorders, adverse skin and body composition changes, adverse ocular changes including glaucoma, impaired sexual function, more severe hot flushes, and urogenital atrophy. Wow, what a list for such a common and rarely necessary surgery!
  • Figure changes. The uterus and its ligaments are key to the integrity of the pelvis. The cutting of those ligaments, the pelvis’ support structures, destroys pelvic integrity. As a result, a woman’s figure changes. The hips widen and the torso collapses until the rib cage sits directly on the hip bones. This causes a shortened and thickened midsection, protruding belly, and loss of the curve in the lower back making the derrière appear flat. These changes lead to back, hip, and leg problems, chronic pain, and impaired mobility. These effects are discussed here. Back pain after hysterectomy is one of the (many) “dirty little secrets” of Gynecology.
  • Organ dysfunction. The uterus sits between the bladder and bowel and keeps them where they belong. Hence, these organs drop and are adjacent to each other after hysterectomy. These changes can cause dysfunction as discussed here and here.
  • Sexual dysfunction. The uterus is a sex organ. Many hysterectomized women report a loss of sexual function – libido, arousal, and ability to orgasm – with or without ovary removal. Many also report feeling asexual and emotionally empty. This may explain why a renowned gynecologist referred to the uterus as a woman’s “heart center.” How ironic that the uterus is also essential to heart health!
  • Cancer risks. Last but not least, removal of the uterus increases the risk of some cancers. These include thyroid, renal cell (kidney), bladder, rectal and brain cancers.

The Devastating Toll of Hysterectomy

Women’s experiences are also compelling evidence of the devastating effects of hysterectomy. It can affect every relationship and aspect of life having far-reaching societal repercussions. Here, here and here are some heartbreaking stories of shattered lives. The Bleeding Edge documentary chronicles the stories of a few women who were harmed by Essure (tubal sterilization coils) and subsequently had hysterectomies. The HERS Foundation’s recently launched “In My Own Voice” project includes some women’s stories. Hopefully, more will come forward and share their experiences.

The uterus and ovaries are essential to a woman’s whole life. Female organ removal has been proven over and over again to be incredibly harmful as far back as 1912. Yet 45% of women end up having a hysterectomy. And over half are castrated at the same time which further increases the risk of heart disease. Additionally, more women have ovaries removed during separate surgeries. It is no wonder heart disease is the #1 killer of women.

Female organ removal is the biggest healthcare con as discussed here. Lack of informed consent is standard. And even worse, gynecologists commonly use unethical tactics such as instilling fear of cancer and intentionally misinforming women about the consequences. If women knew the facts, very few would consent to hysterectomy or oophorectomy.

In conclusion, the medical industry can no longer put its head in the sand or deny the horrific harm of these surgeries. Only 10% are done for a cancer diagnosis. Yet, it appears that they are gearing up to do even more. The Graduate Medical Education (GME) hysterectomy minimum was recently increased from 70 to 85. When will the ethical medical professionals or authorities address this intentional harm and sexual assault of almost half of U.S. women?

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 from PxHere; CCO public domain.

This article was published originally on February 12, 2019.

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Hysterectomy Trauma

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It was April 2007, I remember seeing my gynecologist for the second time that year and receiving the same painful test, revealing that I had pre-cancerous cells and required a hysterectomy. I was then directed to see a gynecological oncologist for further testing and another opinion. I was not too scared at this point, being it was pre- cancer and not actual cancer yet. Little did I know what was ahead of me.

When I went to see the specialist, he said that I had endometrial cancer, and needed a hysterectomy right away. I was so devastated by the news, scared and confused, me cancer? This was May of 2007, my upcoming 42nd birthday was on the 18th, and here just a few days short of it I was being prepped for a full hysterectomy. I remember before going in how scared I was. I had to sign affidavits that said if they bumped into other organs such as my bladder they wouldn’t be responsible. All the risks involved were also listed, even death. I had no choice. I had to get this emergency surgery, because the cancer was pretty bad.

A Hysterectomy From Hell

The last thing I remember before my surgery was counting down. Then I awoke to the IV in my left wrist, blood just oozing out of it, and all on the sheets. I thought someone shot me because there was so much blood. I also woke up with the gurney underneath me, which they forgot to remove before placing me in the hospital bed. I was confused and hurting so badly. After attending to me with these complaints, I was cleaned up and given a morphine pump for pain, which didn’t even take the edge off. I remember crying in such pain for many long hours, and no one could do anything with my pain management. Two hours after the hysterectomy, I was made to get up and walk. It was so very painful, I thought my stomach was about to come out and hit the floor. I did their painful exercises and was sent home five days later.

At home it was no picnic either. I had a young school aged daughter at the time. My mom was tending to her, so mostly I had to tend to myself. I finally got the chance to look at my surgery site in the mirror, and it was like a horror show. I was cut open from side to side, hip to hip, and had large staples closing the wound. I had a draining hose on each side of the wound. I felt like crap, looked like the bride of Frankenstein, and didn’t have a hospital bed and so I couldn’t easily get up to go walk or to the bathroom. Each time I pulled myself up I thought I would pop those staples out. Each painful step I took, I thought my stomach would just flop out.

The Callousness of My Physician

Two weeks later, I went to see the doctor who did the surgery for a follow up. I asked him, “why do I feel and look the way I do?” “He said what you mean,” very sarcastically. He said I just had a triple surgery. I said “what?” “Well,” he said, “beside the hysterectomy, we had to give you a panniculectomy because there were lymph nodes in there and we couldn’t take the risk of the cancer spreading. Then we had to give you an appendectomy because you had fecal matter in there, and that would have later erupted.”

My mouth stood open with disbelief. I could not believe there was so much wrong with me. Then he said the drains still needed to stay in and he would be sending in a nurse to my home to show me how to empty the drains. He said in six weeks I would be healed, and that I could go back to work then.

I was feeling like a barrel of pooh, mentally and physically and he is already planning my life. I went home. I did all my exercises. I was still in pain. I lost feeling on the outer part of my stomach, had trouble going number two, and my mental health was getting worse. At the 6-week check-up, he took the tubes and the staples out, and tried to write me a note to go back to work. I told him that mentally and physically I wasn’t ready. He didn’t like what I said. I told him that he bumped into my bladder and that I leak urine and have to wear pads now. He said “we told you this might happen and you signed papers.”  He said, “I’ll write you out for another six weeks, but then you have to go back.” I was feeling like I didn’t matter. My feelings didn’t matter. What the hell? I know how I feel.

I went home started to feel anxious and get more depressed. I began having flashbacks of trauma that I experienced in early childhood that wasn’t ever dealt with. I wondered why this was happening to me. Haven’t I suffered enough? I decided to see a disability lawyer. She was kind and wrote me a letter to give to my doctor to give me more time, and she didn’t charge me. I went back to him. He took a copy of it, wrote me out again and said “when you return this is it, you have to go back to work.”  That is when I went to my job and started to collect disability. While I did that, I fought for my disability. It took several times, but I got it. After all the fighting, I had a nervous breakdown, and went into a mental health facility. I was getting help for my issues that weren’t dealt with in the past. It took years to work on myself. All these years, I noticed my physical health deteriorating. I went to the doctors and told them my horror story. Of course no one wants to put blame on what the surgeries did to me physically, only my mental doctors supported the fact that my surgeries caused my breakdown.

Where I am Now

Today I suffer physically from the hysterectomy. I have no sexual libido and no feelings or wanting to have sex. Thank god I have a fiancé who has been through the whole thing with me and who completely understands. I suffer bladder leakage, recurring UTIs, which are very painful, hot flashes, dried out cracked skin, spinal stenosis and neuropathy caused by the stenosis, and sciatica nerve issues from the stenosis. Mentally, I suffered from PTSD, severe anxiety disorder and severe depression.

After 13 years, I am doing better now mentally. I am back working, but still collecting some disability. I have my own place with my fiancé and my dog. If you ask me was I happy with my hysterectomy, my answer is yes, because it eliminated the cancer, but it came with a deep price, the pain and suffering that I will have to live with for the rest of my days.

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 Experiences: Chronic Fatigue

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A few years ago, I began writing for Hormones Matter about the gross overuse and adverse effects of hysterectomy and oophorectomy. Year after year, these posts generate tens of thousands of views and hundreds of comments. The comments inevitably follow the same pattern of unwarranted removal of organ(s) without informed consent and ensuing declining health. We are publishing a series of articles highlighting women’s comments. This is the fifth of the series and addresses the common complaint of chronic fatigue. The first article is about lack of informed consent and can be found here. The second one talks about how our “exterior” settles / collapses after the uterus is removed. The third addresses organ dysfunction and the fourth is about loss of sexuality and emotional emptiness. Although the 90% elective rate of these surgeries would imply that they are “restorative” or at least harmless, medical literature and women’s experiences prove otherwise.

Chronic Fatigue and Loss of Stamina

Many women commented on my other articles about chronic fatigue and loss of stamina and vibrancy since their hysterectomies even if they still had their ovaries. Although sleep problems were a common complaint, even absent those, women just couldn’t seem to get past the chronic fatigue and lack of stamina. These experiences match those of the majority of 1,000 hysterectomized women surveyed by the non-profit HERS Foundation. Those results are as follows:

  • Loss of energy:  78%
  • Profound fatigue: 77%
  • Loss of stamina: 69%
  • Insomnia: 61%
  • Unable to maintain previous level of activity in home: 34%

The complete list broken out by hysterectomy only, hysterectomy with one ovary removed, and hysterectomy with both ovaries removed can be found here. Below are comments from some of my articles.

Chris (age 64) says:

“My husband and I had and unbelievable sex life, I had loads of energy and strength and was able to joke about being “37”. I now feel like and old woman. I want to sleep more then move, I have little strength….”

Jacqueline:

“I have no energy at 38. I have more problems now than I did before surgery.”

NJ:

“The Testim has helped my energy levels but I have lowered the dose as my body hair increased.”

Joshua:

“…my finance had a cervical hysterectomy [sic] back in January of this year and she seems to be having issues with mood swings sex drive depression and fatigue.”

BeBe:

“My hysterectomy was necessary due to Essure permanent birth control. One migrated to my uterus and I was sick from that poison…. I’m 11 months post op…. I’m fatigued. Have migraines and have become very anti social.”

Joan:

“I was a very active women, always running around from 6am till 9pm…. I am tired all the time.”

Teresa:

“I’m 12 years post op…. I stay fatigued and have no sexual drive and depression….”

Sue:

“Hysterectomy [sic] in 2007…. Severe fatigue, bloating, pain under rib. No answers…. My life has been horrible since.”

Jill:

“…my energy levels have dropped too.”

Jen:

“I had TAH kept my ovaries (boy, that was a battle)…. I have had so many problems since…. I truly feel awful. My energy levels are just depleted. I’m dealing with idiot doctors rift now plus I am too tired to go to all these specialists…. I also have severe rib pain right and left. I have bowel problems too and the nausea and fatigue is hell.”

Irene:

“Ever since HYSTERECTOMY my whole personality has changed, gone from an outgoing lady to a hermit rarely interested in socialising and I have little energy and gone from 60kg to 70kg.”

Annele:

“Had my surgery in 2010, compared to photos of me and my energy levels, sex live, I have aged about 10 years in a 5 year period. My mother also went for her hysterectomy during 2012, she experienced similar side effects.”

Sharon:

“I can hardly get out of bed. I have no appetite, no energy, and I feel awful.”

Elaine:

“I ache constantly, I still get intense flashes and my energy level has gone from active (pre-surgery) to minimal…..I am so sleep deprived and so sore….I feel I was not thoroughly informed and this surgery was the biggest mistake! I cry and yearn for who I was a year ago.”

Julie:

“Ever since surgery I had so much pain, discomfort, fatigue, and now depression. I used to be real busy with my family going outdoors for hunts, fishing and picnics. Now days I just barely do anything and my whole life has changed. My health has just been going down.”

Lyn:

“After 3 months post surgery, I had to retire my full time profession as a licensed therapeutic massage therapist due to fatigue, lower back, sacroiliac joint, hip, leg and foot pain!… My balance has been compromised and have had (4) falls since surgery…. I use to enjoy my walks with my dog and make attempts daily, but I become winded and fatigued almost instantly….”

Sue:

“My health just continues to decline. I was the most active person before this surgery, now I do nothing most days. I’m very concerned about my bowel issue and the relentless fatigue.”

Angela:

“I saw my mother destroyed by a hysterectomy at 38. This has been going on for decades and the denial has to stop. Women don’t even have to tell me they’ve had one. I can see it – in their faces, their hair, their figures, their lack of vitality.”

Jacqualine:

“take ambien to sleep”

Marlo:

“I can’t sleep at night.”

KA:

“taking a sleep aide”

Rebecca:

“Can’t sleep, wake up with headaches every day. Having major sweats, Loosing my hair and my mind!”

I caution any woman who is told she needs a hysterectomy and/or oophorectomy or is considering one to heed these comments. With the gross overuse of these surgeries, chances are she’s being sold a false bill of goods. It’s not always a good idea to rely solely on your doctor’s advice as Someone

Who Cares cautions:

“After 40 years of enduring this “disabled” existence, it breaks my heart that no matter how many of us try to warn other women, in various ways, the number of these destructive surgeries continues to increase, not decrease.”

A complete list of my articles can be found here. The HERS Foundation is a good resource for understanding the lifelong functions of the female organs. It also has information about gynecologic conditions and treatment options. These two sites, Gyn Reform (especially the studies/citations link) and Ovaries for Life, are excellent resources about the gross overuse and harm of ovary removal or hysterectomy induced loss of ovarian function.

Share your Story

If you have a hysterectomy story, please consider sharing it on Hormones Matter.

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.

Image credit: PickPic.

This article was first published in April 2017.

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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.

Image created using Canva AI.

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Hysterectomy Experiences: Broken Bodies

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hysterectomy broken bodies

Gynecologic surgeries, namely hysterectomy (uterus removal), oophorectomy (ovary removal) and C-section, are the top overused procedures in the U.S. Only a small percentage of hysterectomies and oophorectomies are considered necessary since gynecologic cancers are rare. According to this JAMA Surgery article on 2007 inpatient procedures, “Two operations on the female genital system, hysterectomy and oophorectomy, accounted for a total of 930,000 procedures (89.3% and 84.6%, respectively, were elective).” These figures do not include the roughly 300,000 outpatient hysterectomies and oophorectomies. This graph (graph B) of indications for hysterectomy is a good visual of how few are done for cancer (~50,000). However, it is misleading in that it appears that hysterectomies have steadily declined since it only includes inpatient procedures. Outpatient hysterectomies have steadily increased since about 2002. The 89.3% “elective” rate would indicate that these surgeries are “restorative” or at least harmless, but medical literature and women’s experiences prove otherwise.

A few years ago, I began writing for Hormones Matter about the consequences of hysterectomy and oophorectomy. Year after year, these posts generate tens of thousands of views and hundreds of comments. The comments inevitably follow the same pattern of unwarranted removal of organ(s) without informed consent and ensuing declining health. We are publishing a series of articles highlighting women’s comments. This is the second one of the series. The first article is about the lack of informed consent and can be found here.

Musculoskeletal Changes Post Hysterectomy

The severing of the uterine ligaments, the pelvis’ support structures, compromises pelvic skeletal integrity affecting the entire musculoskeletal system as explained here. The changes – spine compression, widening of hips and descent of rib cage – cause discomfort and chronic pain over time. Our figures reflect these changes in the loss of our waists, the buffer between the rib cage and hips. That’s why women who have had hysterectomies have shortened, thickened midsections, protruding bellies and the loss of the curves in their lower backs. Endocrine dysfunction further compromises musculoskeletal integrity at least from a bone density standpoint but possibly other mechanisms too. This article addresses these changes. Since the changes are somewhat gradual, many women don’t realize that their hysterectomies are to blame.

Nicole writes:

“leg numbness and back pain”

Theresa says:

“My lower back, hips, and legs are constantly killing me after the surgery. My lower back has an inward indentation as if I have a lordosis back. I never had this before neither all these aches and pains.”

Julie:

“I have been told that my lower back injury is also directly related to my hysterectomy as the entire support structure has been weakened.”

SharonJ:

“I have ongoing PT and dry-needling for my lower back, pelvic floor, sciatica & my hips.”

JRM:

“constant back, leg and hip pain. … My once tiny, strong tummy area is now flabby and my entire abdomen is completely numb.”

Sumbil:

“severe pain in my hipbone and my knee and shoulder left side hurting more and left side sole give me pain when I walk.”

Angie Hayes:

“… at 26 I had a total hysterectomy. Worst thing I could ever do!!! … my hips are tilting in and back pain all the time.… I would love to have the week of pain every month I was having for the rest of my life. Instead I now have some kind of pain every day and just getting worse….”

Jill Reif:

“I lost my waistline, I look in the mirror and cry. I work out but my joints, especially my hips, legs and back throb.”

Barracuda:

“My hips always ache. My pelvis shifted forward because of the round ligament removal, my gait and stance changed…. I can’t take long strides anymore, and letting my knees cross is painful.… That rib to hip thing is real.”

Julie:

“I had two university trained health professionals spell out exactly what removing the uterus, cervix, tubes does to a woman’s musculoskeletal system, connective tissues etc and it ain’t pretty! One was a PT and the other a chiropractor. Since they spend their lives rehabilitating injured and broken down bodies they would know.”

Annele Oosthuizen:

“I am so glad I found your post, I thought I was searching in vain for answers, after my hysterectomy I experienced numerous changes, weight gain, ageing more rapidly, facial features and skin texture changed, my figure changed….”

Michelle:

“It’s been a year since my surgery. Most recently I’m having… and joint pain in lower back and hip bones.”

Eva:

“I had a complete hysterectomy in 2004 due to severe endometriosis. Since then my low back, hips and legs stay in chronic severe non stop pain. I am on heavy pain meds…. I have lost 1″ in height since my surgery as well.”

Julie:

“I had a total hysterectomy in November of 2014. I have experienced so many terrible body changes such as the ones discussed. Hips have shifted sides of stomach are wide. No longer a woman’s figure. Legs got very dimply and joints and back ache. It’s as if I feel all these changes as they are happening and causing so much discomfort…. Doctors don’t seem to want to help and didn’t explain all this beforehand….”

Ram Rakh Bishnoi:

“My wife was undergone operation for removal of uterus (Hyp) in five month ago. But now a days back pain and knee pain problems are come to notice.”

Kristina:

“Not only do I suffer with pain every day, My bone structure is different and my lower abdomen is swollen all the time and hangs over my underwear line…. I used to be tall and thin, strong and energetic. The Robotic Laparoscopic Hysterectomy is a lie and a scam for Dr.’s to make money….”

Sherlyn:

“I am a victim of getting Spinal Stenosis 12 months post Hysterectomy. I had to leave my good job 6/2013. I cannot sit long, walk long, stand long. I cannot clean my home, handwriting changed. Heavy legs, arms. Pain all over body.”

Jay:

“I have chronic low to moderate pain for the last two weeks in back and genitals, dismissed as being nothing to do with the hysterectomy and due to sacral/coccyx issues only…. I believe it is all interconnected.”

Lynn:

“Not to mention I feel like my body looks so different in my midsection.”

Sherlyn:

“I had MRI in 10/2013 found that have cervical spinal stenosis. I also have left hip and left lower back pain.”

KME:

“My figure has shifted also and I now have the poochy pot belly you describe. I am slender otherwise. … my lower back aches nearly every day from my altered and off kilter frame, which is now un-naturally front heavy.”

Barracuda:

“Anatomical, skeletal changes, nobody ever mentions those when talking about hysterectomies. My mother and my sister both had them, and never once mentioned anything about the changes….”

Shalyne Lockett:

“I had a total hysterectomy may 2014 and my lower back hurts daily. I can walk a few steps and it’s worse.”

Ann:

“My body was previously bikini worthy, now as others seem to have experienced, there is less support so my rib cage is lower and my abdomen has a bulge. My pelvic muscles also are almost frozen. I have a new large indent in my back now, almost like the plane across where the uterus was has an empty void and doesn’t support my spine.”

ATH:

“I still have severe lower back pain. The pain is debilitating. I can hardly make it through a full shift at work and driving is something that I avoid because sitting in the same position for more than 5 min is almost impossible….”

Yvonne:

“I am 38 and now feel worse than I ever have. Really bad lower back pain and pain in my pelvic area and pain when urination. Inter course is very uncomfortable also.”

Elaine Bailey:

“Surgeon basically told me I had to have a hysterectomy, I had gone through menopause.…  Now every morning is a chore, my knees, my ankles, my elbows, and recently now my lower back is sooooo stiff and sore. If I sit and try to stand I look like an 80 yr old woman. I ache constantly…. I am so sleep deprived and so sore. I cry and yearn for who I was a year ago.”

Jerri Burris:

“When I was 25 I went to my GYN because I was having painful periods. He did a hysterectomy in which he took everything but my cervix. They tried putting me on several different hormones over a 2 year period, but none were right for me. Now I’m 37 and have been experiencing some major issues with fractured ribs. I have had two fractures within a two month period. Both were caused when someone gave me a hug. And I can’t stand on my feet for long periods of time.”

Lisa:

“my knees don’t bend and I have very little use of my arms as my joints are ceased.”

Lisa:

“I now have terrible osteoporosis.”

Julie:

“I had a hysterectomy 8 months ago and still kept my ovaries. Ever since surgery I had so much pain. … I have been having some pains in my ribs, major lower back pains and my incision still hurts.”

SharonJ:

“a flat ass & tummy pooch now too!”

Nerve Damage Post Hysterectomy

According to this article “Iatrogenic nerve injury following gynaecological surgery occurs more commonly than is recognised and is a significant cause of postoperative neuropathy.” There are several mechanisms cited as major contributors, namely, “mal-positioning, improper incision sites and self-retaining retractors.” It cites a 7% rate of chronic nerve pain after surgery with a “bikini” (Pfannenstiel) incision. The femoral nerve is the most susceptible to injury at a rate of at least 11%.

Although not addressed in the cited article, it would seem that the gradual shifting of bones and other tissue could also cause nerve damage especially compression. Post hysterectomy endocrine dysfunction and impaired blood supply may be other mechanisms of nerve damage. This could have a domino effect on organ function since organs require nerves (as well as blood supply) for proper functioning. The above cited article implies this causal relationship in its statement that “injuries to the nervous supply of the bladder and bowel are beyond the scope of this article.” Women’s experiences with post hysterectomy bladder and bowel changes will be addressed in my next article.

Here are some of the comments from women suffering from nerve damage:

Angie Hayes says:

“… at 26 I had a total hysterectomy. Worst thing I could ever do!!! I have pain all the time cause nerves were left exsposed and my hips are tilting in and back pain all the time. All with other health problems I think maybe connected…. I would love to have the week of pain every month I was having for the rest of my life. Instead I now have some kind of pain every day and just getting worse.”

SharonJ:

“I have ongoing PT and dry-needling for my lower back, pelvic floor, sciatica & my hips.”

Sunny:

“My surgery date was 10/15/15. Felt really great up until last week of January 2016…. Noticed drastic, sudden sharp pain from my lower back shooting around the sacrum, up into my spine, all the way to my neck and head. This sharp pain was coming and going sporadically. But now, the excruciating pain in is my lower back constantly. It feels like constant pain in the bone of the sacrum (lower back). The shooting pain up into my neck and head still occurs whenever it feels like it, i just never get any warning at all. I literally cannot sit comfortably…. Now for the past 3 weeks I am experiencing what feels like a “pulled” something or another in my upper, inner left thigh area. It feels like something is pulling hard- like a stretched out rubber band– and it hurts just as bad as my back. I am in so much pain all day everyday and nothing helps whatsoever. Naturally my GYN got his money out of me and conveniently he is all booked and per his nurse (who was nice enough to return my call), ‘your symptoms do not sound like they are from your surgery in October 2015– maybe you should see a neurologist.’”

Sandra Dalton:

“I had a hysterectomy six years ago since then can’t go without a day having nerve pain on my back hips thighs no legs it’s mostly on my right side I work full time and now I’m of work because I in pain all the time. It’s also on both legs I get burning and like someone putting a sharp knife into me went to doctor and he’s said its not connected to hysterectomy I did not believe him”

Cheryl:

“…. I feel as though your article is describing me. …The pain seemed to have originated from the lower back traveling down my inner thigh via my nerve. I thought I was having sciatica again. But this nerve pain never went away, and to this day I’ve still got it. In addition, over the last few months I’ve gotten this excruciating pain after I am in a lying or sitting position. The pain again originates from my lower back and goes down both legs to the point that I cannot straighten up or the pain increases in intensity. It lasts the entire day now.”

F De wazieres:

“… severe low back pain, pelvic pain, left buttock, thigh, knee calf and foot…. during sex I am experiencing sharp pain that radiates into my hip leg etc and it is now constant. … morphine … is not helping this pain….”

Lyn:

“… I will be 2 years post hysterectomy (TAH). I was 52y/o…. After 3 months post surgery, I had to retire my full time profession…due to fatigue, lower back, sacroiliac joint, hip, leg and foot pain!… I no longer can remain for long lengths of time to stand, walk, dance, sit, or lay in bed without the debilitating feeling of flares of chronic pain.”

Ginger:

“Sciatic, disc tears”

Ann:

“When I woke up from my surgery I also had excruciating sciatic pain which has never gone away.”

I caution any woman who is told she needs a hysterectomy and/or oophorectomy or is considering one to heed these comments. With the gross overuse of these surgeries, chances are she’s being sold a false bill of goods. It’s not always a good idea to rely solely on your doctor’s advice as Someone Who Cares implies:

“After 40 years of enduring this “disabled” existence, it breaks my heart that no matter how many of us try to warn other women, in various ways, the number of these destructive surgeries continues to increase, not decrease.”

A complete list of my articles can be found here. The HERS Foundation is a good resource for understanding the lifelong functions of the female organs. It also has information about gynecologic conditions and treatment options. These two sites, Gyn Reform (especially the studies/citations link) and Ovaries for Life, are excellent resources about the gross overuse and harm of ovary removal or loss of ovarian function after hysterectomy.

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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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