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Victimized by Medicine: Hysterectomy Without Consent

Published on February 6, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Speak Up! Speak Out!

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

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

Please! No More Hysterectomy and Castration

by Someone Who Cares

Published on March 30, 2016

5489 views

My experience with hysterectomy and castration (oophorectomy – removal of the ovaries) began in October of 1975, long before information was easily available on the Internet, and in a time when any kind of warning about this surgery was virtually non-existent, and when a doctor’s recommendation was rarely questioned. With that said…

The trauma done to a woman’s life, from hysterectomy and castration, is not something any woman truly wants her friends and acquaintances to know about her. Many women solve this problem by insisting they don’t have any resulting problems. This, in turn, makes those of us who tell the ugly truth appear to be nothing but neurotic kooks.

In all fairness, some of these women may not be intentionally denying the truth. They may simply be uninformed about the numerous potential consequences of this surgery, even though they might be suffering from many of them. During the first 11 years, this was my experience. In spite of the fact that I was going from doctor to doctor, trying to find out “what’s wrong,” it never occurred to me that all of the seemingly unrelated problems I was living with had been caused by this destructive surgery.

Finally, I started learning the truth: I was stuck with this “disabled” existence for the rest of my life. At first, I was overwhelmed with anger at the gynecologist who had told me this surgery was absolutely necessary, without telling me I would be left with numerous, unfixable problems. Eventually, I put the anger on a shelf in my mind, and became determined to warn other women and the men who love them.

Hysterectomy and Castration Consequences: Sounding the Alarm

Fairly quickly, I discovered that my truthful warning was almost always met with indifference, disbelief and sometimes ridicule, even with family and friends. I also learned that this was a common reaction, experienced by many others, who also tried to share truthful warnings. I finally decided that, with rare exceptions, I would share the warning in a written pamphlet, and I would do so anonymously. Maybe this was cowardly of me, but it was the decision I made, partly because I needed to get on with my life, as best I could. I had a business to run, so I didn’t have the time or energy to “go public” or become a crusader.

And then, there was the medical establishment to contend with. They make billions from this surgery and its aftermath. Consequently, they work very hard to keep the general public uninformed, and they’ve done a very good job of it for decades. To make matters worse, any woman who seeks help for problems, following hysterectomy and castration, is told that the problems are all in her head, and she should see a psychiatrist. I know this from my own 11-year experience, as well as hearing it from many other victimized women.

If it were men having problems, after their sex organs had been amputated, they would be taken seriously. Unfortunately, the same respect is not extended to women. When it comes to women, in spite of the fact that we have been anatomically altered and psychologically shattered and sexually neutered, doctors tell us the resulting problems are all in our head. Sadly, this same destructive surgery and the same belittling attitude from doctors afterward still happens to hundreds of thousands of women each and every year. When will it end?

Hopefully, the next Generation Can Step Up

Quite often, I remind myself that it took women over 70 years of pleading and reasoning and persecution and suffering jail time before we were finally granted the right to vote. Some fights for justice and equal treatment take a long time. That’s reality.

Even though this fight must go on, there’s not too much I can do anymore. After 40 years of enduring the damaging consequences of hysterectomy and castration, my physical strength is almost completely gone, to the point that I can barely function. These days, I jokingly describe myself as a physically broken-down old mule with a sparkling personality and a sharp-as-ever mind. It helps if I can laugh about it.

I will never stop caring about the millions of uninformed, unsuspecting women who represent the next potential “crop” of victims, but I don’t have the strength to fight anymore. It’s time for me to leave this struggle in the hands of younger women, and hope they can finally succeed in putting a stop to this legal assault on women.

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Participate in a Documentary about Ovary Removal – Oophorectomy

by Ovaries for Life

Published on February 19, 2016

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Forty percent of U.S. women have had a hysterectomy between ages 45 and 54. There are about ~700,000 hysterectomies per year in the U.S. From 55% – 70% of women have healthy ovaries removed at the time of hysterectomy. Another 300,000 ovaries are removed for benign ovarian cysts. The removal of the ovaries or oophorectomy causes serious and chronic health issues. Read the many personal stories on our blog and/or comments in our hysterectomy articles; the consequences of oophorectomy are devastating. For example, this story illustrates some of the many problems caused by oophorectomy.

Side Effects and Health Risks of Oophorectomy

The serious effects of oophorectomy have been documented in medical literature for over a century. The low rate of ovarian cancer – 1.3% lifetime risk – does not justify the high rate of ovary removal. Some of the side effects and increased health risks of oophorectomy (and post-hysterectomy ovarian failure) include:

Heart disease
Osteoporosis
Parkinson’s
Alzheimer’s and other dementia
Memory impairment
Mood disorders (depression, anxiety, irritability, mood swings)
Metabolic Syndrome / Type 2 Diabetes
Lung cancer
Loss of epidermal thickness / skin collagen
Ocular / vision changes
Sleep disturbances
More severe hot flushes
Vaginal atrophy
Sexual dysfunction

Naturally menopausal ovaries produce hormones a woman’s whole life. Hormone “replacement” cannot compensate for the loss of the ovaries.

Tell Your Story in a Documentary

Ovaries for Life is collaborating with Eidolon Films to bring awareness to the gross overuse and lifelong harm caused by ovary removal – oophorectomy. They are seeking women to tell their stories in a new documentary. The experiences of women who have had both ovaries removed will be a powerful testament to the medically documented adverse effects.

If you had both ovaries removed without being told the long-term health risks and would be willing to be interviewed, please send an email to info@overy.org. Due to a limited travel budget, we may include only women in the general Washington D.C. area but may need to consider those outside that area.

The interview process will take place from mid-March to mid-April. You may choose to remain anonymous in the film. Questions and inquiries may be directed to info@overy.org.

Thank you.

My Hysterectomy Horror

by Sharon A. Hutchinson

Published on February 2, 2016

10262 views

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.

Hysterectomy: The Great Women’s Healthcare Con

by WS

Published on January 14, 2016

17771 views

The hysterectomy and oophorectomy industry is growing annually with approximately 700,000 hysterectomies performed every year. The oophorectomy rate is about 70% of the hysterectomy rate. These are merely estimates based on a sample of inpatient data from short-term, acute-care, nonfederal hospitals along with hysterectomy and oophorectomy outpatient percentages published by the Agency for Healthcare Research and Quality (AHRQ). In 2003, 8.6% of hysterectomies were outpatient (ambulatory) according to Table 10 in this publication. In 2012, that rate was much higher at 39.8% as shown in the right-hand side bar here. And according to page 8 of the aforementioned publication, the 39.8% pertains to only abdominal and vaginal routes. The 2012 oophorectomy outpatient rate was 36.7% (bottom of page 7). The Centers for Disease Control (CDC) reports only inpatient hysterectomies which is why hysterectomy rates are typically understated by the media. A 40% understatement is a gross misrepresentation and outpatient hysterectomies now likely exceed 40%.

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). Below are some comments I have read and heard since my unwarranted hysterectomy. I am curious what other women were told before their surgeries.

What Gynecologists Say Before the Hysterectomy

The uterus is just a useless, bleeding organ once you’ve completed your family.
Well, you can’t continue with these problems.
It’s time for that hysterectomy we’ve been discussing.
You’ll wish you’d done it sooner.
You’ll feel like a new woman.
What’s your problem? A lot of women have hysterectomies.
Sex won’t be any different; I’m not operating on your brain.
Myomectomy won’t work. Your fibroids will come back and you’ll need another surgery.
We can’t keep checking your lining and you don’t want uterine cancer. Let’s just get it out so you don’t have to worry about it.
You should not be bleeding after menopause. (Fails to mention that most cases are nothing serious.)
I’m removing the crib, not the playpen.
You are close to menopause anyway.
You don’t need your ovaries since you’re close to menopause (or in menopause).
You may have cancer.
You won’t have to worry about endometrial cancer. (Does not reveal how rare it is.)
You won’t have to worry about cervical cancer. (Does not divulge that it is rare and takes years to develop from untreated abnormal cells.)
You won’t have to worry about ovarian cancer. (Does not reveal how rare it is in women who do not have a genetic predisposition.)
Everything has to come out.
If you have a hysterectomy, you won’t have to take a progestin / progesterone. It will make HRT much easier.

What Gynecologists Say After the Hysterectomy

You were a mess in there. It’s good we didn’t wait any longer.
You are lucky you did not have cancer.
No more worries about gynecologic cancer.
That (problem) wasn’t caused by the surgery.
We’ve never heard of that / those problems before.
You can’t be having those symptoms…you still have your ovaries.
None of my other patients have that problem. Maybe you need to see a psychiatrist.
You are just depressed. Here’s a script for an anti-depressant.
It’s all in your head.
The patch works for all my other patients. I don’t know why it doesn’t work for you.
You were already in menopause. You shouldn’t be having any symptoms.
Your ovaries have nothing to do with your thyroid.
I can’t help you anymore. You’ll need to find another doctor.

What Women Say About Hysterectomy

You’ll be fine. You’ll just be a little tired for awhile.
My husband can’t tell the difference during sex (but fails to divulge that sex is disappointing for her until after you’ve had surgery).
I can have sex any time now…don’t have to worry about bleeding (but fails to mention she no longer has any interest / libido).
I will save so much on pads and tampons! (She doesn’t realize she may very well trade those for incontinence supplies down the road since hysterectomy is associated with incontinence.)
I’ll be fine once I balance my hormones.
I’ve gained some weight but doesn’t everyone after menopause?
It’s the best thing I’ve ever done. No more periods. Woo-hoo!
I feel like a new woman.
I wish I’d done it sooner.

Hysterectomy Facts: What No One Seems to Talk About

Hysterectomy destroys a woman’s figure due to the loss of structural / skeletal support (citation).
Hysterectomy compromises bladder and bowel function (see articles here and here).
Hysterectomy increases risk of bladder and bowel prolapse (see articles here and here).
Your vagina will likely prolapse over time (citation).
Many women report a loss of sexual function (libido, arousal, response) regardless of whether or not ovaries are removed (see articles here and here).
Hysterectomy is associated with an increased risk of heart disease even when ovaries are not removed (citation).
Hysterectomy is associated with lower bone density even when ovaries are not removed (citation).
Hysterectomy increases risk of thyroid cancer (citation).
Hysterectomy is associated with a 30% increased relative risk of renal cell (kidney) cancer (citation).
Hysterectomy is associated with reduced ovarian function or complete ovarian failure causing an increased risk for a number of health problems (citation).
The ovaries of intact women produce hormones their whole lives and keep us healthy (citation).
Gynecologic cancers are rare and account for only a small percentage of hysterectomies. If you look at the National Institutes of Health’s (NIH) cancer statistics, the 2015 estimate of new cases of cervical cancer is 12,900 and endometrial cancer is 54,870. This total of 67,770 accounts for just a small percentage of the 700,000 hysterectomies each year. The 2015 estimate of ovarian cancer is 21,290 with a woman’s lifetime risk being a measly 1.3% which does not justify the 450,000+ oophorectomies each year. 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. Another procedure of the ob/gyn specialty, c-section, is reported as the “highest-frequency procedure in this list and accounted for $7.7 billion in aggregate costs.” Also concerning is that c-sections increased by 46% from 1997 to 2007. Oophorectomies decreased by 20% during that same time frame. The article does not say if hysterectomies increased or decreased. This points to long-standing overuse of harmful surgeries in the ob/gyn specialty.
Graduate Medical Education requires that each resident do at least 70 hysterectomies. Organ sparing myomectomy (fibroid removal) and cystectomy (cyst removal) are not required procedures for gynecology residents (citation).

The Myth of the “Happy” Hysterectomy

I am always curious why women who claim to be happy with their hysterectomies hang out on hysterectomy forums. You would think they’d be out living life now that they are free of whatever gynecologic problems led to the surgery. Other types of surgeries don’t have dedicated forums and people posting long after their surgical recoveries. Surgeries are supposed to solve your problems so why would you need support and advice once you have recovered from the surgery?

Granted, some of the problems can take years to manifest. Others are more immediate such as loss of sexual function and hormonal / endocrine havoc if ovaries were removed or shut down shortly post-op. The skeletal changes that destroy our figures, backs, and hips are gradual but start to become evident within the first couple years. Many women don’t seem to realize (or maybe they are just in denial) especially if they gained a bit of weight. We can feel the changes before we see them. There are odd sensations (which are uncomfortable and maybe even painful) due to the bones and tissues (as well as bladder and bowel) shifting and migrating “south” via gravity. The figure changes are typically evident long before the chronic back, hip, and leg pain sets in from the shifting and misalignment of bones (ribs resting on the hip bones) and compression of nerves and blood vessels.

The bladder and bowel effects can be just as distressing and life-altering as detailed here. This Medscape article on the long-term effects of hysterectomy has several sections about impacts to pelvic organs (may require free registration to read full article). You can read more about the anatomical and skeletal effects of hysterectomy here. Even though I aged 15+ years in a matter of months after my hysterectomy, I am just as devastated by the disfigurement…maybe more so. And the bowel changes and loss of my sexual self are big losses too! This “Can Hysterectomies Hurt Sex Lives?” article talks about this after effect as well as others. This Medscape article states:

Even hysterectomy alone, for example, without the removal of the ovaries, can result in sexual dysfunction because of neurovascular injuries. Removal of the uterus and ligation of the arterial supply at the uterine pedicles can result in ovarian atrophy and fibrosis of the vaginal wall and clitoral cavernosal smooth muscle.

This “Evaluating Sexual Dysfunction in Women” article cites mechanisms of sexual dysfunction post-hysterectomy as follows:

Scar tissue may prevent full ballooning of the vagina, which makes intercourse more difficult. The loss of the uterus results in diminished total vasocongestion and the lack of uterine contractions, which may trouble some women. Internal scarring or nerve damage from the surgery may on occasion result in pain or lack of feeling during or after sexual intercourse.

The article also cites statistics from the Maine Women’s Health Study (see page 621) showing a significant increase in sexual dysfunction post-hysterectomy. Of the patients for which complete data was available, “no interest in sexual activity” increased from 49% pre-hysterectomy to 75% at 12 months post-hysterectomy. “No enjoyment of sexual activity” increased from 44% to 84%.

If you do some sleuthing, you will usually find these “happy hysterectomy” women posting elsewhere about problems they’ve developed since surgery such as mood and personality changes, weight gain, joint pain, fibromyalgia, bladder and bowel problems, sexual dysfunction, prolapsing vaginas, no longer feeling like a woman, poochy bellies, back, hip, and leg pain, bloating, sleep problems, nerve issues, vision changes, rapidly aging skin, thinning and graying hair, muscle wasting. They may go from doctor to doctor only to hear “well, you are getting older.”

Mood Changes Post Hysterectomy and Oophorectomy

The mood changes, especially for women who have had their ovaries removed, can be so severe they lead to suicide or thoughts of suicide (ideation). Even absent depression, many women report a blunting of emotions and loss of joy / vibrancy and interest in life. It’s as if all the color in life has changed to a blah gray. This article talks about these brain chemistry changes. It’s difficult for people to grasp or fathom how such drastic changes can result from a surgery that is so common to the point that 40% of women aged 45 to 54 have had one (4^th paragraph). If you think about the fact that the uterus and ovaries are the very parts that make us female, it is no wonder we feel dead after their removal. If you think of the uterus as the only uniquely female organ (since the testicles are a man’s equivalent of the ovaries), that may explain why women who keep their ovaries oftentimes complain of blunted emotions and loss of femininity.

Also of note in the article on brain chemistry changes is that women tend to never forget the date of their hysterectomies. It is that life-altering! For women who do not connect the dots, it can be a big aha! moment when they finally do. But we still can’t, for the most part, count on them to warn intact women. After probing, some women do eventually admit they regret having had the surgery. But those who “sing the praises” early post-op seldom admit to regret once the problems set in. Granted, some women’s gynecologic problems, especially those involving chronic pelvic pain, are so severe that the long-term trade-offs of hysterectomy are worth it. Endometriosis is one such condition; however, hysterectomy and/or oophorectomy is not a cure so the pain may continue or return.

Financial Interests Disguised as Support

To make matters worse, many of the hysterectomy forums are sponsored by device companies, and thus, have deep conflicts of interest. One of the larger forums, has drawn the attention of a former New York Times reporter for their questionable presentation of hysterectomy information. Here she discusses the deep conflicts of interest between the site’s founder and the parent company, Intuitive Surgical, and their promotion of the da Vinci robot, a surgical tool.

On these particular forums, negative comments are censored, posts about hysterectomy’s effects on a woman’s figure are deleted and post-hysterectomy ovarian failure is represented as if it is natural menopause. It is not. Even more disturbing is the manner in which they present hysterectomy. For all intents and purposes, hysterectomy is a perfect solution.

I always wonder too what’s with women who ask for input or advice and then attack those who share their negative experiences and try to warn them about the many risks and long-term effects. Why is that? We are only trying to save you from a life of never-ending heartache and health problems.

The fact that the “sister”hood site has so many sub-forums – HRT, no HRT, sexual dysfunction, pelvic floor and bladder issues, the road less traveled (long-term problems), separate surgeries, return of endometriosis, aching hearts – is a huge red flag that hysterectomy is typically fraught with more problems than it solves. And some of those problems are permanent and progressive. That is why you see women posting many years after their surgeries even though they may have been “singing its praises” early post-op.

A Surgical Racket

Wake up ladies! We are kidding ourselves if we think physicians don’t remove organs unnecessarily. Or that they are upfront about the negative effects. Is it possible some of them are not aware of the after effects? I suppose that could be the case if they aren’t taught in medical school. But surely any doctor who has been doing hysterectomies and/or oophorectomies for years has to see the harm. And the studies prove these surgeries are harmful. They would have to put their heads in the sand to not see it. So often, women are neither advised about all of the treatment options, surgical and non-surgical, nor fully informed of the risks and benefits of those options. As Dr. Ernst Bartsich, former Clinical Associate Professor of Ob/Gyn at New York Weill Cornell Medical Center, says in “Hysterectomy: The Operation Women May Not Need” women would not choose hysterectomy if they knew the “dramatic and life-altering” consequences.

Another gynecologist who has been outspoken about the deception and overuse of hysterectomy is Dr. Stanley West, author of “The Hysterectomy Hoax.” He talks about how gynecologists are urged to cultivate their patients for the ultimate revenue producing treatment, hysterectomy, in this article “Far Too Many Hysterectomies Still Being Performed.” He is quoted as saying:

It is time we doctors stopped disassembling healthy women. But nothing will change until more women look their doctors in the eye and calmly state their determination to remain intact women.

Another noted gynecologist who appeared on Dr. Oz said that the mantra at Tufts when she was chief resident was:

There is no room in the tomb for the womb.

This article calls out the absurdity of gynecologists treating the uterus as a “useless, bleeding, symptom-producing, potentially cancer-bearing organ” that needs to be prophylactically removed once women have completed their families. Here the uterus is called “a terrible thing to waste.”

This “Unnecessary Hysterectomy: Lack of Informed Consent” article delves into the profit motives of the healthcare industry, lack of regulation of medical professionals, and the public’s misguided belief that medical professionals are ethical and competent. These factors coupled with sexual prejudices and women’s ignorance about their bodies makes women even more vulnerable to medical abuse.

The lure of “less invasive” surgical methods (laparoscopic, robotic) is just another marketing ploy to get women into the operating room. Sure, the smaller incisions are a plus but the same amount of cutting and damage happens internally so the long-term effects are the same as traditional / “more invasive” methods. Dr. Ernst Bartsich is quoted in this Health Day article about the overuse of hysterectomy and how discussions about the surgical methods distract from the issue that hysterectomy is rarely necessary. Unfortunately, we cannot count on our government to address this over-treatment and harm. I recall reading of someone being told by a legislator that it would put too many gynecologists out of business. Another legislator said that Congress does not legislate healthcare because it is a “slippery slope.” There have been two Congressional hearings on the overuse of hysterectomy, one in 1978 and one in 1993 but still the problem persists. The healthcare providers member organizations (e.g., ACOG, AMA) have very powerful lobby efforts / Political Action Committees (PAC’s). Their political action websites, Ob-GynPAC and AMPAC, can be found here and here, respectively. The full gamut of ACOG’s advocacy efforts can be found here. The following quote by Upton Sinclair explains it in a nutshell:

It is difficult to get a man to understand something when his salary depends on his not understanding it.

Three of the most overused surgeries – c-section, hysterectomy, and oophorectomy – belong to the ob/gyn specialty. And even though c-section has been added to ACOG’s Choosing Wisely list of overused tests and procedures, hysterectomy and oophorectomy are not on the list. Notice too that the Patient List includes only one of the five items from the Clinician List. Is ACOG trying to keep patients in the dark? Ironically, clinicians are advised not to screen for ovarian cancer in asymptomatic women at average risk. Yet, gynecologists are removing women’s healthy ovaries at alarming rates!

You would think women’s organizations would want to take on the issue of unnecessary female organ removal. But the only one that has is the HERS Foundation which was founded in the early 1980’s to educate the public about the critical lifelong functions of the female organs. Women who have undergone hysterectomy and/or oophorectomy reported these adverse effects. HERS also provides information on treatment alternatives. This 12 minute video of female anatomy and the functions of the female organs is eye-opening.

Efforts by me and others to engage National Organization for Women (NOW) and National Women’s Health Network (NWHN) have not been acknowledged. The mission of these two organizations is deeply rooted in reproductive choice so they may view the issue of unnecessary hysterectomies and oophorectomies as counter to a woman’s choice. However, by not recognizing the gross overuse and failure by doctors to fully disclose the harm and treatment alternatives, they effectively limit the very reproductive choice they seek to promote.

I will say that at least NWHN strongly discourages women from undergoing hysterectomy on its Hysterectomy Fact Sheet. But why then does it give so much more press to hysterectomy than treatment alternatives? The Fact Sheet gets mired down in questions to ask your doctor about hysterectomy and a detailed explanation of each surgical method when it should be focusing on conditions and treatment alternatives. At least they list the HERS Foundation as a resource. But it’s concerning that they also list Hystersisters. Menopause Hormone Therapy is one of their Advocacy Issues presented as “a triumph of marketing over science and advertising over common sense.” Hysterectomy is also much more about marketing than science and common sense! NWHN states that menopause is a normal transition versus a disease that needs to be treated with drugs. There would be much less need for hormone therapy if there weren’t so many hysterectomies and oophorectomies!

You May Be A Guinea Pig

Did you know that many of the unnecessary hysterectomies are done for training purposes? Gynecology residents in accredited Graduate Medical Education (GME) programs must do a minimum of 70 hysterectomies. Not only that, you may be surprised to learn (as late as the day of surgery) that “your” hospital is a teaching facility despite no university affiliation, the big Mercy system included. With a woman’s lifetime risk of all gynecologic cancers being less than 3%, it is obvious that the removal of female organs is rarely necessary. So why have nearly 40 percent of women aged 45–54 had a hysterectomy? We should also question why the oophorectomy (ovary removal / castration) rate is as high as 73% of the hysterectomy rate as shown in the chart below.

The average woman’s lifetime risk of ovarian cancer is very low at 1.3% and history has shown that ovary removal has not reduced ovarian cancer deaths. Not only that, studies have clearly shown that ovary removal even after menopause is associated with many increased health risks – heart disease, osteoporosis, dementia, Parkinson’s, depression, anxiety, lung cancer to name just a handful. You can see all the studies here. Of course, these risks also apply to women whose ovaries fail after hysterectomy since the ovaries are essential for good health.

Naturally menopausal ovaries continue to produce hormones from the inner stroma as mentioned in this article and hysterectomy with ovarian conservation is associated with reduced ovarian function. Female organ removal is a very lucrative business and no one seems to care about all these unnecessary surgeries that are causing so much harm to over 700,000 women every year.

To All Intact Women Out There

Be on your guard…you could be next.

Make sure you get a definitive diagnosis and do your own research on all of your treatment options and their risks and benefits.
Be wary of any procedure that alters the “reproductive” system (hysterectomy, unilateral or bilateral ovary and/or tube removal, ablation, tubal sterilization). Even ablation that is sold as a hysterectomy alternative can do just the opposite – increase your risk for hysterectomy as explained here.
Keep in mind that with hysterectomy and/or oophorectomy you may be trading temporary (gynecologic) problems for the permanent and progressive problems caused by these surgeries.
Don’t be lured in by the “minimally invasive” sales gimmick, the “sister”hood, or cancer scare tactics. The high rate of hysterectomies leads women to falsely believe that it is a benign surgery.
If you are still considering hysterectomy, keep in mind that actions speak louder than words. Be observant of women who’ve had hysterectomies. If you knew them before surgery, you can oftentimes tell they have changed, if not in their looks at least in their demeanor / disposition. If they are a number of years post-op, they will have that altered figure with the thick and shortened midsection.
Don’t shortchange yourself (or your significant other). You deserve to remain whole. There may be other options available but you will likely have to seek them out. I fell into that trap. Here is my story.

For Women Who Have Had Hysterectomies

Make sure you understand the repercussions of organ removal so you can make the best health decisions for your altered body.
Do not make excuses for doctors who remove organs unnecessarily and are not honest with their patients. We deserve better!
Be honest about how the removal of your organ(s) has affected your life and health. Share what you have learned about the life long functions of the uterus and ovaries. We need to stop treating hysterectomy as a surgery that most women are expected to have as a sort of rite of passage. It is only through open and honest communication that we can make a difference going forward.
Tell your story to various organizations. You can do it here on Hormones Matter. Consumers Union (a subsidiary of Consumer Reports) and ProPublica have patient safety projects. You can submit your story to CU’s Doctor Accountability and Medical Errors. ProPublica’s Patient Harm form can be found here.

In conclusion, most hysterectomies and oophorectomies are unnecessary and there is plenty of evidence that many women are conned into getting these damaging procedures. As women, we need to see through the con and protect ourselves and other women. These surgeries have risks and long term consequences. Here is how the con worked on me. I am curious what you were told by doctors and other women before your surgery. Please share. You can find all my articles about hysterectomy here.

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Photo by National Cancer Institute on Unsplash.

Should I Have a Hysterectomy for Endometriosis?

by Philippa Bridge-Cook, PhD

Published on May 27, 2015

3153 views

Every woman dealing with endometriosis has faced this question at some point in her journey. It may be a question she has asked herself, as she navigates treatment options, perhaps having tried many treatments that have not worked. Perhaps her doctor has stated it as the only possible next step. Or, friends and family members have suggested it, thinking that it is a cure for endometriosis. Sometimes, endometriosis patients feel pressured by those around them to consent to this surgery. And sometimes endometriosis patients are so desperate to find a solution to the never-ending pain that they just want “everything out” and to not have to deal with it anymore.

Does Hysterectomy Cure Endometriosis?

If you are considering a hysterectomy to manage endometriosis pain and symptoms, the first question that needs to be asked is how effective is a hysterectomy in curing endometriosis? There have been some studies published that address this question. The rate of symptom recurrence varies quite a bit depending on the study—from 19 to 62 percent, when at least some ovarian tissue was conserved. One major reason for persistent pain after hysterectomy for endometriosis is incomplete removal of endometriosis lesions at the time of hysterectomy, and thus, the reason for the variability between the studies likely reflects, at least in part, the differences in surgical skill at completely excising all endometriosis lesions.

What about Removing the Ovaries?

When both ovaries and both Fallopian tubes are also removed at the time of hysterectomy (bilateral salpingo-oophorectomy, or BSO), the risk of symptom recurrence is lower, but still present, at 8 to 10 percent. Again, complete removal of endometriosis lesions at the time of hysterectomy improves post-operative outcomes.

Many endometriosis patients who have had hysterectomies and bilateral oophorectomies for endometriosis are reluctant to take hormone replacement therapy (HRT) for fear of stimulating any endometriosis tissue that may have been left behind. This question has not been addressed comprehensively with published studies. The risks of HRT related endometriosis growth depend somewhat on whether any endometriosis tissue was left behind at the time of hysterectomy. The risks of HRT in general, however, cannot be dismissed. Studies have shown a higher incidence of certain cancers, gallbladder disease and cardiovascular events. Despite these risks, medical consensus suggests the benefits of HRT outweigh the risks. The disparity between the research and consensus means each woman should weigh the risks and benefits carefully.

Complications Associated with Hysterectomy and Oophorectomy

What are the risks and potential long term complications of hysterectomy, or hysterectomy plus bilateral oophorectomy? A large study of almost 30,000 nurses undergoing hysterectomy for benign (non-cancerous) diseases showed that hysterectomy plus BSO is associated with an increased risk of death from all causes, increased risk of fatal and non-fatal heart disease, and increased risk of lung cancer. Hysterectomy can cause pelvic floor dysfunction, and can negatively impact bladder function: the risks of urinary incontinence and vaginal prolapse increase significantly post-hysterectomy, although these complications usually do not develop until 10 to 20 years later.

Hysterectomy plus BSO causes surgical menopause, which causes an abrupt cessation of hormones, compared to the gradual process of natural menopause. This can result in more severe menopausal symptoms, such as hot flashes, vaginal dryness and irritation, and decreased sex drive or other problems with sexual function. In addition, the beneficial effects of the small amounts of hormones that continue to be produced post-menopause from the ovaries are gone in women who have undergone BSO. Removal of the ovaries can be devastating for some women, as observed by the personal stories shared on Hormones Matter.

Hysterectomy with or without BSO is associated with increased risk of heart disease and osteoporosis. The risk of both of these diseases increases after natural menopause, and therefore the reason the risk may increase in even in women who keep one or both ovaries at the time of hysterectomy may be partially because hysterectomy itself is associated with earlier menopause– on average by 3.7 years, when both ovaries are conserved, and by 4.4 years with unilateral oophorectomy. BSO and unilateral oophorectomy are also associated with an increased risk of Parkinson’s disease, cognitive impairment/dementia, and depression and anxiety. New research suggest the loss of hormones post oophorectomy, estradiol in particular, is detrimental to mitochondrial functioning. Mitochondrial injury is believed to be the mechanism by which post menopausal, surgically menopausal and chemically menopausal (Lupron and Lupron-like drugs) women develop a high rate of cardiovascular and neurological disease.

Things to Consider before Hysterectomy

Before a hysterectomy is considered as a treatment for recurrent pain or other endometriosis symptoms, other potential causes of pelvic pain should be considered. Pain can be from recurrent, or more likely, persistent, endometriosis, but there are many other conditions and diseases that can cause pelvic pain, such as adhesions, pelvic floor dysfunction, adenomyosis, interstitial cystitis, and nerve pain. Of these, adenomyosis is the only condition that will improve with a hysterectomy, and for some of the other conditions, a hysterectomy may cause worsening of the problems. It is a good idea to discuss all the potential causes of pelvic pain with a doctor or a team of doctors familiar with all these conditions to try to ascertain whether hysterectomy is the best potential treatment for your medical condition.

Many patients have a combination of causes contributing to their pelvic pain and other symptoms, so it can be very complicated to weigh the potential benefits against the risks. In addition, it is my opinion that given the risks and long-term complications of hysterectomy, the first line surgical treatment for endometriosis should be laparoscopic excision of all endometriosis lesions, with conservation of all reproductive organs if possible.

As someone who interacts with many endometriosis patients in my work with The Endometriosis Network Canada, patients on both sides of the hysterectomy question have told me that they feel judged for the decisions they are making or have made. I don’t believe that anyone should be judged for making the best decision they can make, taking into account their own personal situation and, preferences. However, I do want everyone making this decision to be fully armed with accurate information, so that they can make the best decision possible in what is usually a very complicated situation.

Review of Permanent Birth Control Options

by Margaret Aranda, MD

Published on March 30, 2015

4591 views

Ladies, here is a typical scenario of a happily-married couple with two children, who now desire permanent sterilization. They do not want children any more; she does not want a pregnancy now, nor in one year (i.e., the FDA’s definition of “permanent”). She and her husband want no more kids.

What are their options? Bilateral Tubal Ligation (BTL)? What is Tubal Ligation Syndrome? Does she take out her ovaries? Why can’t the man just get a vasectomy? Fifteen percent of men do. One study shows that a man undergoing vasectomy at a young age may lead to a more aggressive form of prostate cancer later in life. Not an option, young men.

For women, starting from the least “invasive,” to the most “invasive” (and not meant as a comprehensive list or as medical advice or treatment; most doctors would say that you need to talk this over with at least 2 doctors), here is a general outline of permanent birth control choices.

Things to remember as you review the possibilities of permanent birth control:

Speak up and ask questions! These are not easy decisions and the choice you make will impact the remainder of your life. Do not let anyone make this decision for you.
Understand all of the risks associated with the procedure you choose. Compare those to the risks associated with alternative options, including the option of not having the procedure done.
Always seek a second opinion; and sometimes third and fourth opinions.
Use social media to talk to other women who have gone through the procedure.

Bilateral Tubal Ligation (BTL) for Permanent Birth Control

Bilateral tubal ligation or BTL is the most common method of family planning for permanent birth control with up to 33% of married women worldwide opting for this method.

A BTL is best performed during or up to a few couple days after childbirth, when the uterus is still swollen, and the Fallopian tubes are just under the skin. There are many different types, all requiring spinal anesthesia for optimal pain control and patient satisfaction.

Bilateral tubal ligation involves surgery to block the fallopian tubes and prevent the ovum (egg) from being fertilized. BTL can be done by cutting, burning or removing sections of the fallopian tubes or by placing clips on each tube. It is 99% effective after the first year.

Risks Associated with Bilateral Tubal Ligation

Over time, the tubes can reconnect. This happens with 15 – 20% of BTLs performed. When the fallopian tubes reconnect, it is possible for the woman to become pregnant. This can lead to a tubal or ectopic pregnancy.

A tubal/ectopic pregnancy is a life-threatening condition that warrants immediate attention.

With an ectopic pregnancy, the fertilized egg remains in the fallopian tubes rather than implanting in the uterus. It cannot survive in the fallopian tube and without immediate surgery; the mom is at risk for bleeding to death. Emergency surgical removal of ectopic pregnancy is warranted.

Take heart, as you are NOT killing your baby. As an anesthesiologist against abortion, I have had many religious discussions with many concerned women. I assure them that I have never given anesthesia for an elective abortion because I think it goes against the Hippocratic Oath. I have only given anesthesia to SAVE THE LIFE of a mother with a tubal pregnancy. We usually pray before going into the operating room and the anesthesiologist gives sedatives. The patient should have no memory of even being in the operating room.

In addition to the risk of ectopic pregnancy, there are additional side effects and contraindications to consider with this form of permanent birth control. One of the most common ‘side effects’ is a set of symptoms called post-tubal ligation syndrome. The symptoms associated with post-tubal ligation syndrome include: increased menstrual bleeding, decreased libido, fluctuating mental health, and more pronounced PMS, abdominal pain, some leading to hysterectomy, and more. The validity of the symptoms associated this syndrome have been fodder for scientific debate for decades and decades. The research is mixed.

In 2005, Shobeiri et al (2) showed in 112 post-Pomeroy BTL patients vs. ‘normal’ patients that menstrual abnormalities did not differ. However, women in two age categories experienced statistically more uterine bleeding: ages 30 – 39; and ages 40 – 45. In 2011, Moradan et al studied 160 women, finding no changes due to BTL (3).

Although there may be an increased rate of hysterectomy due to increased menstrual bleeding after a BTL, nowhere in the medical literature can a biologic correlation be found as the culprit, except with the decrease in hormones produced after an oophorectomy. However, talk to individual women, glance through Facebook and other social media sites, who have had tubal ligation and developed post-tubal ligation syndrome, and see that these women are hurting and suffering. Their stories should be considered as one contemplates this form of permanent birth control.

For my part, perhaps what we need now is a study that includes an n > 10,000, since the rate of hysterectomies is so high in the United States.

Reversing Bilateral Tubal Ligation

Reversal of BTL requires microsurgery, and a fertility specialist may be consulted. Remember to get 2^nd Opinions on any surgery, and take someone with you. It makes the most sense to go to a surgeon who does this frequently, rather than go to a surgeon who does this infrequently.

Surgical Methods for Tubal Ligation

Bipolar Coagulation: cauterizes portions of the fallopian tubes
Monopolar Coagulation: same as (A) + radiating current for more damage + cutting the tubes at the end
Fimbriectomy: takes a part of the fallopian tube that is closest to the ovaries, preventing the tube from accepting an egg, and therefore from fertilization
Irving Procedure: two ties are placed at a length on one fallopian tube; then the tube is cut between the ties, and sewn to the back of the uterus
Tubal Clip: metal tubal clips made by Fishie(R), or Hulka (R): smashes the Fallopian tube shut, so the egg does not pass from the ovary to the uterus
Tubal Ring: with a silastic Band or Tubal Ring, the Fallopian tube is doubled up and then surgically placed to clamp it shut
Pomeroy Tubal Ligation: often referred to as having the Fallopian tube “cut, tied, and burned”
ESSURE(R) Tubal Ligation*: Nickel-plated and fiber coils are screwed into each Fallopian tube through the vagina, under spinal anesthesia or pelvic block. An immune response is desired, causing inflammation and scar tissue, blocking the tube from receiving sperm. The FDA states that “permanent,” specifically with Essure(R), is “one year or more.” Controversy surrounds this metal device implant, which has been known to lead to side effects in individual patients (including but not limited to): breakage of coils into pieces; tubal pregnancies; perforation (i.e., poking a hole through) of the coils through the fallopian tubes; perforation of the uterus or colon; infants born with the coil going through the upper ear; colonic-vaginal fissure (a space or track leading from the colon to the uterus, whereby E.Coli stool can be passed through the vagina); hives; abdominal pain; back pain; hysterectomy, and more. For more information about Essure, see my article on Hormones Matter.
Adiana Tubal Ligation: It is very interesting to note that Adiana Tubal Ligation is no longer used, due to a 2012 lawsuit and judgement announced by Conceptus(R) (the developer of Essure(R) procedure), against Hologic, Inc. (4).

Hysterectomy (LAP- HYS) for Permanent Birth Control

In the USA, women over age 45 have a 40% chance of having a hysterectomy. At 70 years of age, 70% have had a hysterectomy. One study showed 50% of hysterectomies were unnecessary upon 2nd Opinion; the other found that 90% were unnecessary.

Usually, the procedure is done as a laparoscopic procedure, where little slits in the abdomen are used to push in CO₂ gas, blow up the belly, and insert instruments to cut and chop the uterus out. The risks of general anesthesia include vomiting, aspiration pneumonia, death, tooth chips or tooth breaks, heart attacks, and a multitude of complications. Your specific risk factors should also be explained to you in common language. Plan to have “referred” shoulder pain to your scapula; and to wear jogging pants for weeks before your belly shrinks down to size.

Hysterectomy with Morcellation

In addition to the risks of hysterectomy and anesthesia, the morcellator adds additional risks. The morcellator is almost like a vacuum machine that follows the ‘carpet’ of the uterus in a line, while water is slurped over it. It essentially turns the uterus into one long piece to remove it. The problem with morcellation is that it spreads potentially diseased tissue throughout the abdominal cavity.

It is impossible to know if the fibroids or other uterine growths common among women undergoing hysterectomy are cancerous or otherwise diseased prior to surgery. When the morcellator is used, the risk of spreading cancer increases. What once was Stage I (baby) cancer is now Stage IV (monster) cancer all because the surgeon whizzed that morcellator throughout the abdominal cavity. For more information about problems with morcellation, read (5) and (6). The odds of having an undetected cancer may be 1:350. A newly published cohort study of 41,777 women shows there may be a link wherein younger women are less apt to have an underlying cancer before a myomectomy to remove fibroids with the morcellator, and keep the uterus intact (7). Elderly women may be at highest risk for a precancerous or a uterine cancer to be found.

Hysterectomy: What to do about the Ovaries

When considering a hysterectomy either for permanent birth control or for health issues, it is important to understand the role of the ovaries in women’s health. Some physicians will push for the prophylactic removal the ovaries under the auspices of protecting women against ovarian cancer (risk = 1.7%). The argument often includes a ‘we’ll be in there anyway; we might as well remove them’. This is not an acceptable rational for oophorectomy/ovary removal.

“Ovarian conservation” refers to the view that the ovaries belong in the pelvis, and are not to be taken out during a hysterectomy, if possible. There are risk factors for ovarian cancer in my book, so you assess your own risk at home. When considering hysterectomy with or without ovary removal, remember that this is an individual decision for each woman.

When we conserve the ovaries, hormone synthesis and secretion to continue. Ovaries can secrete hormones like estradiol, progesterone, and testosterone for up to 15 years after a hysterectomy, so ladies, they are NOT just decorations. The ovaries are an endocrine system in their own right. They protect against bone injury, fractured hips, memory loss, heart disease (America’s #1 killer), and more.

However, even with ovarian conservation, hormone issues arise. When the ovaries lose communication with the uterus as it disappears, the biofeedback loops between the uterus and the ovaries are lost. Ladies, we are living shorter lifespans for the first time in history. Men, on the other hand, are gaining lifespans. So put down that fried chicken and eat a salad. And keep your ovaries, if you can. 2^nd opinion, again.

Hysterectomy with Oophorectomy (Ovariectomy; LAP-HYS with Oophorectomy) 

OK, so your surgeon says you have to have “it all” taken out: uterus, both Fallopian Tubes, and both ovaries. You are at high risk for ovarian cancer, confirmed by a 2^nd Opinion. After the surgery, you will be in full-on, surgical menopause, overnight.

With oophorectomy, you will be in surgical, menopausal “shock.” You don’t get 10 – 15 years for the ovaries to gradually lose their ability to secrete hormones. Nope. Just jump in a cold pool. “Surgical shock” involves hair loss, hot flashes, pain during intercourse, memory loss, depression and guilt, irritability, inability to sleep with sometimes severe insomnia, lashing out at your loved ones, decreased libido, among other symptoms. So check out the situation yourself; this is a monumental decision, not a small one. Find your Risk Factors for ovarian cancer in my book, and check off where you are. In my opinion, you should not get an oophorectomy unless you are at risk of ovarian cancer.

For me? No thanks. I’m keeping my ovaries. What if we removed testicles in men prophylactically? Do you think they would SPEAK UP? So ladies, just SPEAK UP!

Permanent Birth Control for Men: Vasectomy

One permanent birth option lays the burden upon men. Vasectomy is the surgical procedure that ties and seals the male vas deferentia, preventing sperm from reaching ejaculate, effectively preventing insemination. It is a popular method, with 15% of American men undergoing vasectomy. Its effectiveness is near 100% after a brief period of time. However, it is not without side effects. The most concerning is a correlation between vasectomy and prostate cancer. Prostate cancer is the second most common cause of death in American men, making this a Public Health issue.

Researchers here studied over 49,000 men for 24 years or less. 6,023 cases were diagnosed as prostate cancer, with 811 lethal cases. One fourth of all men had a vasectomy. Overall, the risk for men with a vasectomy having prostate cancer later on was 10%. And it wasn’t low-risk prostate cancer that was the association; it was an advanced risk of (20%) and lethal (19%), respectfully. Of men who had a regular PSA checked, a 56% chance of lethal prostate cancer was found, especially if the vasectomy was performed at a younger age (8).

To summarize this study, out of 49, 405 men studied over 24 years, 16 in 1,000 men were found to have lethal prostate cancer. Although statistically significant, it only translated to a “relatively small increase in absolute difference” for risk of prostate cancer.

There are also concerns about an increased risk of dementia in later life for men who have had a vasectomy. Though this and other risks have been disputed. So, the decision is a personal one to be discussed with the patient and a 2^nd Opinion physician, weighing the risks and benefits.

The Final Decision Rests with You and Yours

Whatever you decide, do the research first and make a decision that you are comfortable with. If have already undergone permanent sterilization and suffer side effects affecting quality of life, you are not alone. Speak up and speak out so that other women can make their decisions with all of the evidence in front of them.

We cannot change the past, but we shall change the future. Our mothers wanted things to be better for us than they were for themselves…and what do we want? We want things to be better for our daughters and their daughters, too. I have a daughter. I wrote a book covering all these issues (and more) for her, because everyone thought I was going to die.

At a recent doctor’s appointment, the receptionist smiled at me not because she remembered me, but because I was still alive. My work, my book (9) is my legacy to my daughter, and therefore to you.

Still bedridden after 9 years, I am fighting to change the course of women’s healthcare. How much more can YOU do? Aim high. Persevere. And make me proud.

References

Wikipedia: Tubal Ligation. http://en.wikipedia.org/wiki/Tubal_ligation. Last reviewed March 7, 2015.
Mehri Jafari shobeiri and Simin AtashKholii. The risk of menstrual abnormalities after tubal sterilization: a case control study BMC Womens Health 2005 Online May 2. doi: 10.1186/1472-6874-5-5
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1112604/ Last reviewed March 7, 2015.
Sanam Moradanand Raheb Gorbani^.. Is Previous Tubal Ligation a Risk Factor for Hysterectomy because of Abnormal Uterine Bleeding? Oman Med J. 2012 Jul; 27(4): 326-328. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3464743/ Last reviewed March 7, 2015.
Nasdaq GlobeNewswire. Conceptus ® Announces Settlement of Patent Infringement Lawsuit with Hologic. Source: Conceptus, Inc. http://globenewswire.com/news-release/2012/04/30/474765/253823/en/Conceptus-R-Announces-Settlement-of-Patent-Infringement-Lawsuit-With-Hologic.html April 20, 2012. Last reviewed March 7, 2015.
Matthew Bin Han Ong. Harvard Physician, Whose Cancer was Spread through Morcellation, Seeks to Revamp FDA Regulation of Medical Devices. The Cancer Letter. July 3, 2014. http://www.cancerletter.com/articles/20140704_1 Last reviewed March 17, 2015.
Amy Orciari Herman. Cancer Risks from Uterine Morcellation Examined. NEJM Journal Watch. February 7, 2014. http://www.jwatch.org/fw108455/2014/02/07/cancer-risks-uterine-morcellation-examined Last reviewed March 17, 2015.
Wright JD, et al. Use of Electric Power Morcellation and the Prevalence of Underlying Cancer in Women who Undergo Myomectomy. JAMA Oncology February 19, 2015. http://oncology.jamanetwork.com/article.aspx?articleid=2118570 Last reviewed March 17, 2015.
Mohammad Minhaj Siddiqui, Kathryn M. Wilson, Mara M. Epstein, Jennifer R. Rider, Neil E. Martin, Meir J. Stampfer, Edward L. Giovannucci and Lorelei A. Mucci Vasectomy and Risk of Aggressive Prostate Cancer: A 24-Year Follow-Up Study. Journal of Clinical Oncology; Published online before print July 7, 2014, http://medicalxpress.com/news/2014-07-vasectomy-aggressive-prostate-cancer.html doi: 10.1200/JCO.2013.54.8446. Last reviewed March 7, 2015.
Margaret Aranda, M.D. Archives of the Vagina: A Journey through Time. Tate Publishing, 2014. https://www.tatepublishing.com/bookstore/book.php?w=978-1-62854-116-8 Last reviewed March 18, 2015.

A Long and Complicated History Topped by Levaquin: Please Help

by Destini Bates

Published on October 21, 2013

6848 views

A long and complicated medical history topped by Levaquin

Here is my story from the beginning. Well, not my beginning, but the beginning of what seems to be a downward spiral health wise. Please help us figure this out.

Two Pregnancies and Cervical Cancer

In 1998 at the age of 22, I became pregnant with my first born son. A normal pregnancy and natural delivery. Upon my six week check up after delivery, they found abnormalities in my pap smear. With further investigation, I was diagnosed with cervical cancer. The doctor said it was as if the wallpaper was cancer but the sheet rock and wood was not affected. I had a LEEP procedure that removed the damaged area with a good portion of my cervix. I was advised that if I wanted more children, I should do so within the next two years, because any further complications would mean a hysterectomy.

In 2000, I became pregnant and delivered my second child, a daughter. The pregnancy was a little more complicated. They feared my cervix would not hold well enough to get her to full term. During the pregnancy, I was diagnosed with hypothyroidism, likely due to autoimmune dysfunction. As a child, I developed vitiligo, an autoimmune disorder of the skin.

The birth of my daughter was natural, although she came four weeks early. The doctors were still investigating my thyroid condition and eventually determined that I had a big goiter and thyroid nodules. The endocrinologist said that the nodules were too small to biopsy, and though he could not say positively that they were benign, he thought that they were. I was instructed to just continue with my thyroid replacement hormones.

Endometriosis and Partial Oophorectomy

In 2004, I experienced terrible pain in my pelvic area. All testing came back normal and the doctors originally dismissed my pain. It got so bad that I could not even sit down without terrible pain. The doctor took me in on a emergency basis and an internal ultrasound showed a mass in my pelvic region. My local doctors believed it to be cancer, as it showed all of the characteristics of malignancy. I was sent five hours away to a cancer specialist. They performed an open surgery to explore the area and remove the mass. Pathology showed it to be benign, so they removed my left ovary and tube. I was diagnosed with endometriosis.

Autoimmune Disease

In 2005, I became very ill. It started with what they believed to be an infection. Later, I was diagnosed with mononucleosis. I was told that my Epstein Barr numbers were through the roof. I literally could not get out of bed. My body hurt so bad that moving, other than to get to the bathroom, pretty much did me in for the day. I was placed on a medical leave at work. Blood testing revealed high levels of antinuclear antibody (ANA) in my blood. My local doctor thought that I may have Lupus. I was referred to a rheumatologist who diagnosed me with Fibromyalgia and Chronic Fatigue Syndrome. After six months, I returned to work.

Hysterectomy and Complications

In 2006, after years of suffering with terrible periods and a few more abnormalities on my pap smear, my OB decided it was time for a complete hysterectomy. My first night in the hospital seemed to be smooth, but in the morning things took a change. I was on a morphine pump for pain, and though I had no pain from my pelvic region, I was having pain in my chest and my left arm. The nurse said my oxygen level was extremely low. The next thing I remember was doctors running in everywhere. I was rushed to CT and then to ICU where I spent the next few days. To this day, I do not know what happened. I got the doctor’s reports. They concluded that it was either a pulmonary embolism or a coronary event. Although, at discharge the doctor told me he thought it was anxiety.

Thyroidectomy, Lung Mass and Fatty Liver

During this time and through following the thyroid diagnosis I always felt awful. No energy, extreme fatigue and weight gain of in total 70 pounds.

In 2007, I developed an illness in my stomach and bowels. The first diagnosis was gallstones. I had surgery to remove the stones. They kept me in the hospital overnight because of the incident the last time I had surgery. I had an endoscopy a few days prior to surgery, and they found I had ulcers and tested positive for H pylori. I got C diff from the hospital and had to deal with that on top of everything else. A colonoscopy revealed that I had ulcerative colitis.

In 2010, my goiter was growing to the point that swallowing and sometimes speaking became an issue. My endocrinologist felt that those symptoms, coupled with the nodules, meant it was time to remove the thyroid. I had a thyroidectomy that year with no complications other than severe fatigue and a struggle to get my levels right.

In 2011, a minor fall left me with a torn meniscus and knee surgery, really not important, I know.

In 2012, I was diagnosed with mono again and the symptoms of pain in my abdomen called for a CT. In receiving the results, I was told I had a 7mm nodule in my right lung and a fatty liver. My liver levels had been high for a few years. I was sent to a pulmonary doctor at the Lahey clinic in Massachusetts. He said that because of my young age and the fact that I had never smoked it was likely not cancer, but that we needed to recheck in six months. My six month checkup revealed another nodule and I returned to Lahey clinic for another consultation. He again said that it did not have some of the characteristics of malignancy and because it was small our best bet was to rescan in another six months.

The Current Nightmare – Enter Levaquin

So this brings me to my current nightmare, one that has continued for seven months. It began on Easter Sunday. I had been sick with what I believed to be pneumonia as my husband had just had it, and I seem to get whatever is going around. We visited the local Emergency rooms and I was diagnosed with pneumonia. They gave me a pill to take while in the ER room. I asked what it was, as my husband was given a Z pack. She told me Levaquin and I took it without question, as it meant nothing to me at the time. We waited for the discharge paperwork and left with a few different pills and and a prescription to continue Levaquin for 10 days.

By the time we reached our house, 20 minutes away, I was itching all over. Hives began to form and my face and ears were starting to swell. I went to a different ER that was 5 minutes away. The rushed me in and administered IV prednisone and Benadryl. I was put on oxygen. After about an hour, symptoms started to slow and I was released. As the reaction was going on, I felt like I was crazy. I think, or at least thought at the time, that it was from the itching. By the time we left the hospital, all I could think about was breathing.

I felt that if I did not concentrate on my breathing I would forget to breathe.

My discharge instructions were to continue with oral prednisone for 3 days and take Benadryl every 4 hours for the next 24 hours. Monday, I slept all day. That evening, I decided I could not take anymore Benadryl. When I came out of what felt like a drug induced coma, I was scared, very frightened actually.

I could barely speak and I did not want my husband to leave me.

I am a very independent person and me feeling like I needed him was not usual. I was very different and it alarmed my husband. He felt it was the prednisone and would not let me take anymore. I finally begged that he let me take another Benadryl to sleep, as I was scared and hating the way I was feeling and functioning. My head hurt so bad that I felt like it may explode.

Tuesday this continued and I could not get off the couch or speak clearly.

Wednesday we returned to the ER. I underwent a CT scan which came out normal and the ER doc felt it was migraines. He dismissed the fact that it could be the Levaquin, as it was only one pill. I was treated with migraine medicine and released.

At first I felt a little better, but some of the symptoms would not go away. I had a limp with pain and weakness on the right side of my body. My neck and shoulders hurt so bad that I could not lay down. The headache seemed unending. I laid around feeling not myself for days.

I recognized my kids but could not come up with their names. I started calling objects by different names, wrappers for socks, and looper for bra, talker for phone.

By Monday my husband brought me to the walk-in clinic, as my doctor was away and the ER had proved to not be of much help. We shared all of the pain and symptoms.

The doctor concluded that it was anxiety and gave me Tramadol for the pain.

The next day my husband brought me to my primary care physician and she was mortified by my condition. She sent us straight to the ER and said she would call them to let them know I was coming and my condition. I was still in terrible pain my head mainly and my right side. I was sent for an MRI that came back normal and underwent a lumbar puncture. It took the radiologist four tries to get the spinal tap and then she forgot to get the pressure.

I was admitted to the hospital for further testing. I had a magnetic resonance angiogram (MRA) and numerous blood tests. I had debilitating pain that left me feeling like I literally may die. I could not stand the light, the nurses had to hang blankets from the windows. The littlest noise hurt me horribly. My husband stayed by my side, as I was still nervous to have him leave me.

I was released a few days later with a slew of different migraine medicines and an appointment to see the neurologist.

The neurologist and her staff were not my favorite from the get go. The nurse asked if something was wrong with me, as I could barely speak and continued to grunt in pain. She changed my medicines and sent me for an EEG that same day. She called a few days later.

I was having seizures in my left temporal lobe.

She prescribed Keppra and left it at that with no follow up appointment or anything. She did mail me a paper about epilepsy. The Keppra did not work well for me. I became very nasty and most of my words were very colorful.

After two weeks, we went back to that neurologist and she was gradually going to reduce the Keppra and start me on Lamictal. The next week I went to see another neurologist that was four hours away.

She said that I had status epilepticus and sent me right to the ER for an infusion of Dilantin.

The next day I returned to be almost myself. I was talking better and acting more like myself.

This sickness has also changed my personality. I say silly things and giggle after everything I say, most of which is inappropriate. I act very childlike or like someone who has mental retardation.

After two days, I slipped back into my previous state. This continued for months the medicine was too low, requiring me to take more than twice the recommended amount, then too high. After two more EEGs both showing slowed brain waves on my left temporal lobe, I was sent to a big hospital to have a long term EEG. There they found the same slowing/episodes that happened 8 to 15 times a day.

I was taken off the Dilantin and started to become myself again. I lost over 20 pounds in month without trying. I was getting around and helping around the house. I was regaining interest in some of my previous hobbies and wanting to rejoin society. This continued for a little over a month. Then, I started feeling bad again.

My cognition remained improved, but my body and my head felt as they did in the beginning of this nightmare. One evening, at my nieces birthday party, I started having pains in my head.

My hearing became very acute. Everything was magnified in sound and my vision again became very blurred.

We left immediately, and by the time we were home, I could barely speak.

My jaw hurt and felt like it could hardly move. My head was aching so bad and my fear had returned.

I have regressed into my previous state and that has continued for two weeks now. I was referred to the neuro-ophthalmologist who said I have pappiledema severe in my right eye and mild to moderate in my left. My neuro thought that I may have a tumor somewhere in my body and my immune system, as a result, was attacking my brain. This is because the testing for paraneoplastic syndrome came back showing positive striational antibodies.

This week I had a PET/CT scan and an third spinal tap. The PET scan showed no abnormalities, although I was given the disc and there is a clear hot spot, at least to my untrained eye, but I guess I need to trust the experts. The spinal fluid was being sent to the Mayo Clinic for testing. For the past weeks, I have had terrible pain in the left half of my face, including my ear, my jaw and near my temple. I know it is not a sinus infection, as I get them regularly and can spot them in an instant. I am not sure if its an infection, but I am inclined to think it is another chapter in this book. I will list some of my symptoms, diagnosis and current medications.

Current Symptoms

Headache, daily
Blurred vision
Magnified hearing
Increased anxiety and fear nothing like before
Right sided weakness
Numbness in tingling in my extremities
Memory impairment
Cognitive deficits
Fatigue
Body Pain
Weight Loss 20 pounds (yay)
Eye pain
Poor judgment
Child like behavior
Clumsiness
Lack of coordination
Lack of focus and inattention
Restlessness
Insomnia

Current Diagnoses

Encephalitis
Temporal Lobe seizures
Status epilepticus
Encephalopathy
Papilledema
Paraneoplastic Syndrome
High Blood Pressure
Acid Reflux
Fibromyalgia
Chronic Fatigue Syndrome / Mono

Current Medications

Synthroid 200 mg
Lamictal 125 mg 2 times daily
Fluoxetine 40 mg
Prtonix 40 mg
Linsopril 10 mg
Vivelle patch (estrogen 100 change twice weekly)

The blood pressure medications and estrogen are new in the last two months.

Please Help

I apologize for the length of this documentation. I want to sincerely thank you for any time and consideration you put into this. I certainly know that it is not your responsibility or obligation. I have two beautiful children and this has taken a severe toll on them. I have gone from a mom who was involved in every aspect of their lives, to a mom who is constantly afraid of causing them shame. In this, I have lost my job and an income, which means paying an incredible price for cobra insurance. I feel like we are up against a wall and running out of possibilities. This is no way for anyone to have to live. I am willing to entertain or try pretty much anything at this point. Thank you again, this means the world to me, just to gain some insight.

With Gratitude and Appreciation.

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oophorectomy - Page 3

Speak Up! Speak Out!

We need your help.

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Hysterectomy with Oophorectomy (Ovariectomy; LAP-HYS with Oophorectomy) 