My Hysterectomy Horror
It all began when I noticed a tiny pinkish spot on my underwear. Maybe a bit of dryness, or perhaps a slight infection. But a few days later it happened again. Doing some research, I was convinced it was due to vaginal dryness–nothing to worry about. But a week or so later, there was real, actual blood on the toilet paper. It was obvious that something was going on that was perhaps more serious. Couldn’t put it off any longer–a trip to a gynecologist was in order.
Being new to the area, I searched the Internet and found a Dr. C. His “Healthgrades” on the web were all glowing five star reviews. So off to him I went. I hadn’t seen one of these specialists in decades. There was no need to. Never any pain, no discharge and only the occasional UTI, which my family physician took care of. With no symptoms (until now) it seemed a waste of time and money. So I made an appointment with his office, a bit concerned but not overly so.
Dr. C was not intimidating, but there was something about him I did not like, although I could not put my finger on it. He greeted me kindly enough, talked about mundane matters and in general seemed a decent man. Then all of a sudden his demeanor changed, even before he had read through the history I had filled out in the waiting room. He started pointing out various things: my age, my early first menstrual period (at the age of 10) and my relatively late menopause (maybe 55? I cannot remember exactly). He then told me about the profile of women who were at high risk for endometrial cancer. Which of course I fit to a “T”.
The Big Sell Begins
Before he even examined me, the very next thing he did was to start talking about that wonderful new surgical instrument, the DaVinci robot. He explained that in most cases, women could avoid the large incision and blood loss because this method was an assisted laparoscopic procedure and patients were bouncing back to their former lives in a matter of weeks after having a total hysterectomy. Why was he discussing this now, before there was no exam, no diagnosis? My head was reeling.
After being lectured for not having annual mammograms, he wrote out a prescription and told me to get one post haste. Finally, the physical exam. After he looked around a bit, the speculum pinching and my nerves now totally frazzled, he took a Pap smear (the cotton tip was covered in blood). Then I was told to dress and come back into his office.
He told me that to rule out cancer he had to do a hysteroscopy–a procedure where the uterus is filled with saline solution, samples of the lining were removed for biopsy, and also pictures were taken of anything that looked amiss. But since his schedule was pretty tight, he advised me to get the mammogram first and then set up an appointment for the procedure sometime in the coming weeks.
Back in his office, he had me watch a video (everything already set up before I had even entered the room) about how all these women of various ages were giving glowing reports of their wonderful hysterectomies done by this latest advancement in surgical procedures. Back to work, back to exercising, back to everything in their former lives in six weeks! As I watched, my mind kept asking–why is he showing me this now, when not a single biopsy had been done and he had seen nothing amiss during his examination? After receiving the date of my hysteroscopy and pre-surgical testing, I left his office shaking, frightened, a bad headache coming on, and the thought that I just might be dying.
Phase 1 of the Hysterectomy Sales Job: Stoking the Fear of Cancer
I had the mammogram. The results were mailed to me, indicating that something was seen in my left breast and that I should come back for a more detailed look at this foreign mass that could not be felt by a physical exam. I went back to have a more in depth mammogram of my left breast. About a half hour later a radiologist spoke to me and said that it looked like I had a fibroadenoma, a type of benign lump. But the only way to be sure was to have it biopsied. I was given an appointment with yet another doctor; this time a general surgeon. After feeling around my left breast without success, he finally found it buried deep near the chest wall. He squeezed so hard I cried out in pain. His conclusion was to have it biopsied and then go from there.
I went to C— Medical Center, where an associate of the surgeon used a puncher to withdraw nine samples from the tumor, putting in a tiny metal clip to mark the spot. I was then subjected to still another mammogram against my vehement objections-I told them I thought I have been irradiated enough-to assure that the clip was in the right place. I left very angry, wondering how they dared to go against my rights as a patient to refuse any aspect of treatment. But their attempts to thoroughly frighten me about the “Big C” were very successful.
I returned to C— Medical Center for the hysteroscopy. Dr. C was almost one hour late, greatly increasing my sense of apprehension as well as giving me a pounding headache and trembling all over from nerves. Finally, I was wheeled into the operating room. It was a relatively short procedure and I woke up about 45 minutes later. As I was in recovery, Dr. C spoke to my husband in the waiting area, telling him that he had found some polyps but as far as he could tell there was no cancer present. While showing me the photos of the polyps, he mentioned that he would have to wait for the pathology report, but he was certain everything was benign as he had already done a microscopic examination of the growths. As I was dressing to leave, my husband came to help and informed me of what Dr. C had told him.
One of the nurses advised me to make a follow up appointment to see the doctor as he would be receiving the official pathology report as well as the results of my breast biopsies. However, I learned that he would be going away to Maine for a two week vacation and would see me when he returned.
Two weeks! A long time to find out if there was cancer in either my breast, my uterus, or both. So I endured the wait, trying to keep my mind occupied with other things and also dealing with my entire uterus aching from the hysteroscopy. Regardless, I felt positive and when my follow up day arrived I walked into his office believing that all was fine, based on what my husband had been told.
During the follow-up visit, Dr. C told me that although the breast biopsy was benign, there was an encapsulated cancer in one of the endometrial polyps. The shock I felt cannot be described. Hadn’t he said everything looked good? I hardly heard his next words: that if he were to get cancer, “this is the type he would wish to have as it was very slow growing”.
Phase 2 of the Hysterectomy Sales Job: The Wonders of Robotic Surgery
He then began to tout the virtues of the DaVinci surgical system for hysterectomy, even remarking that he was thinking of becoming trained in the procedure and moving from private practice to becoming a specialist with the DaVinci. (He actually proceeded to do just that, and is now a practicing gynecological surgeon specializing in the DaVinci robotic surgery technique. That’s where the money is…but I digress.)
I was then forced to watch the same video TWICE about the wonders of robotic surgery-the same one I had seen at the time of my first visit. It did not reassure me. I had cancer growing inside me, and the happy, glowing faces of the women talking to me from the DVD player did nothing to reassure me that this was going to be easy and that everything would be rosy again.
While I was watching women jogging in a park and playing with their grandchildren on the video, Dr. C was on the phone to Dr. B, a gynecologic/oncologist who was “top of her field”. He spoke personally to Dr. B on the phone and was able to get me an appointment quickly. This couldn’t be happening; I walked into the office in such a positive mood and now my thoughts ran to how long I have to live. Despite his claims to the contrary, this would be major surgery and I would lose my (useless, as he put it) female organs.
I felt ill and told one of the nurses my head didn’t feel right. She took my blood pressure and it was around 204/107. The woman informed the doctor and he took me into another room and had me lie down as he would not let me drive home with such high numbers. And so there I was, lying on an exam table while he was telling me to imagine being on a tropical beach with the waves gently rolling to shore. How I did not have a stroke puzzles me to this day.
The drive home was one of the worst of my life. I told my husband the diagnosis, and he was as shocked as I was. I spent the greater part of the day crying, and even entertained suicidal thoughts thinking that just ending my existence quickly would be the easiest way to handle this. But truly all I could do was wait to see the oncologist, who would determine what course the rest of my life was going to take. My husband had suggested that I get a second opinion. At first this seemed reasonable to me, and I made an appointment with a second gynecologist to find out if such a drastic approach should be made. But I was so terrified of the “C” word, totally believing in the diagnosis and afraid that it would spread very quickly, that I decided to cancel and just go along with Dr. C. The fear they instilled in me was so intense I had lost my ability to think clearly.
Shortly after all the above had transpired, my husband and I sat in Dr. B’s office as she went through my records, which had been previously faxed over from Dr. C. Again the same words “If I had cancer, this is the type I would want to get”. (Much later, after perusing the internet, I found that these doctors seemed to be working from the same script, all using the exact same words to a large number of frightened women. To me this indicates they all received the same training and were told exactly how to present the “slow growing cancer” and the wonders of robotic surgery.) She then told us how she was going to perform a total hysterectomy/oophorectomy, probably using the DaVinci robot. Dr. B went into how there were risks including excessive bleeding, nerve damage and possibility of blood clots. It was then that I told her I had Reflex Sympathetic Dystrophy and felt that I was not a candidate for this type of surgery. The chances of the RSD spreading were high. She said she didn’t see where that would present any difficulty.
Hysterectomy and Robotic Surgery Side Effects Never Mentioned
Dr. B then went on to say that I would be put in a steep Trandelenburg position, with my head nearest the ground and my body near to a 45 degree angle. What she didn’t say was that this position would be maintained for about four hours. I was told that the abdomen would be pumped full of gas, but never mentioned the awful side effects that would occur post-op and that the gas would take a long time to dissipate. There was absolutely no discussion of what the ensuing lack of estrogen was to do to my body over time, the increased heart attack risk (which is very high in my family on both sides), osteoporosis etc., most stemming from the loss of my ovaries. Lastly, no mention was made of the weight gain of thirty pounds or more that the majority of women experience following a hysterectomy and how this weight would be almost impossible to lose. And the huge, huge breast size increase that would occur.
Dr. B then asked if we had any questions, but we could not think of anything else at the time. She just so happened to have a cancellation, thus assigning next Tuesday as the date of my surgery. Since this was only a few days away, I then went to my primary physician, Dr. C’s wife, who filled out the necessary forms to clear the way for the operation.
Pre-Hysterectomy Fear Sets In
The night before my surgery was living hell. I could not sleep. I thought of the cancer. If this is what I truly had, then perhaps I should just commit suicide then and there rather than go through years of suffering. Yes, that is the horrendous state my mind was in that night. But my husband sat up with me and tried to reassure me that all would work out in the end.
The day dawned, and by 7 am my husband and I were waiting in the pre-surgical cubicle. Dr. B was running late due to complications from her first surgery that day. I happened to mention that the night before I was wondering if it wouldn’t be better just to bring all this to some kind of premature end. Immediately, I was surrounded by hospital personnel and had a young student nurse sit with me. I was put on suicide watch, my surgery canceled. They wheeled me (with a security guard following) into the isolation room, where for the entire day every move I made was watched. Why was I there? I only expressed my fears over the future and had no suicide plan. I felt like a criminal. My handbag was turned upside down and the contents roughly shaken out onto the table. When I had to use the bathroom, an aide came in to watch my every move. I will never forget the humiliation I felt. This lasted until a psychiatrist came in that evening. He asked me why did I have to take Ativan four times a day! This was totally incorrect. It was prescribed as a PRN medication and I rarely took more than one or two in a week. The hospital apparently had screwed up my entire medication list. At any rate, I was OK to be discharged the next morning and the suicide watch was canceled. To this day I don’t feel free to tell any health professional if I am feeling suicidal or even close to thinking about it for fear of being subjected again to the demeaning treatment of being “locked up” for the crime of feeling overwhelmed.
Hysterectomy Day and the Pain of Recovery from Robotic Surgery
My surgery was re-scheduled for October 2. Back at C Medical Center, I was anesthetized and woke up in recovery screaming. I was wheeled into some kind of maintenance area while they prepared a room for me-all this while my agony was extremely apparent. My entire rib cage felt like knives were being thrust through it. I thought I was having a heart attack and would die right then and there. The response was for someone to bring in a dinner plate of regular food as though I hadn’t just had over four hours of being under heavy anesthesia. Eventually the terrible pains ended, and I later learned that because of the head downward position during surgery, most of the gas pumped into my abdomen ended up in my rib cage around my heart and lungs. No one ever prepared me for this.
While in my room, I kept asking where my regular medications were and why I was not being given my hydrocodone. They informed me that the pharmacy did not have my dose on hand. I called my husband. He came rushing back to the hospital to give me my pain medication. This was against “the rules”, but by then he was furious with the lack of care. When I asked for my night time medications as they helped me sleep, I was instead offered a regular sleeping pill, which I refused. My medications for my RSD and psychiatric conditions were withheld from me for my entire stay.
Dr. B arrived the next morning and when I informed her I had been given no pain meds because they “didn’t carry my dose”, she appeared angry and said that I should have been given two of the dose they presumably carried. I felt well enough to walk around the hall and was then discharged with the usual post-op instructions. There had been some benign cysts removed from one of my ovaries. Abdominal lymph nodes were removed. Everything was biopsied and came back benign.
Botched Surgery or Normal Aftereffects of a Robotic Surgery?
I came home Wednesday, October 3. All seemed fine until Friday evening, three days later, when I looked down and saw two large spots of dark blood growing ever bigger on my white T-Shirt. Extremely alarmed, I called Dr. B’s number. Her assistant, Dr. H. (whom I later learned had been present during my surgery) told me this was “normal”. If it didn’t stop I was to go to the ER; otherwise, just keep my regular follow-up appointment on Wednesday.
During my Wednesday appointment I told Dr. B what had happened. She did not seem concerned until she began taking the steri-strips from the incision above my naval. When she removed the one on the end a large amount of very dark red blood literally exploded out of the incision, so much so that her assistant had to jump back in order not to be sprayed by the blood. Then began a massive cleanup job as blood continued to come out with the removal of each steri-strip. Dr. B gave no explanation as to what had happened. She began packing the area with iodoform tape, shoving it into the incision (very roughly, I might add). She must have used over a yard of the tape. Dr. B then said that the incision had to be cleansed and packed twice daily for at least two weeks. Since my husband is an LPN, she instructed him how it should be done, and I was to come back the next week for a check up.
I then went through two weeks of hell, as the amount of packing needed was huge, the tape itself was scratchy and caused additional bleeding in and around the wound. I would have to stuff part of a pillow in my mouth to keep from screaming. The blood stained tape that was removed had to be pulled out of the wound each time, and the amount needed to pack the hole was, to me, unbelievable. Twice a day I had to endure this torture, while my husband tried to make the procedure as gentle as he could. But there is no way the scraping of the wound and the bleeding this caused could be anything but excruciating.
This went on for two weeks, and I told Dr. Brudie I could not stand it anymore. She then took about three large pieces of gauze and shoved it into the hole under and to the left of the original incision. Unfortunately, this proved to be not enough and it was back to the iodoform strip. Healing of this incision and area was long, painful and left me with a keloid scar that constantly feels as though someone is stabbing me in my belly. It only occurred to me later that a blood vessel must have been nicked during surgery.
The Pain Continues
Several months later I experienced pain in the keloid area and vomited up very light green fluid with small white pieces floating around. To this day I cannot eat more than a small amount of food at one time because of the pain it causes underneath the keloid.
Because my pain management doctor, Dr. G, had prescribed that I be given Ketamine during surgery to decrease possible complications from my RSD (and which the hospital VERY reluctantly used even though my pain management doctor had discussed this with Dr. B prior to surgery), it seemed my healing was proceeding normally. It was in November of that year that I suddenly experienced intense burning like fire from my groin area and down my legs. About one week later, large lipomas appeared on both thighs where the burning had been.
When I tried to discuss this with Dr. H (Dr. B had since moved back to Florida), the matter was dismissed. I believe these lipomas were the result of lymph node removal, but no one seemed to want to discuss this latest development. Occasionally I would experience a light reddish-pink discharge from my vagina. This was put down to vaginal dryness. I have since discovered that this would occur when I was severely constipated and the vaginal walls began rubbing against each other. This constipation is still an almost everyday affair.
Post Hysterectomy/Oophorectomy: Pain and Suffering
I had made up my mind that I was finished with all of this. Cancerhead was literally driving me crazy, as every ache and pain to my mind had to be cancer. My life has changed so much for the worse that I often feel that I died the day they took my female organs. I don’t understand why organs are first removed and then biopsied. I was given no physical therapy instructions, no offer of some kind of hormone replacement to stop the horrible symptoms that have developed since the surgery. Even though I was already menopausal, it has since come to my knowledge that our ovaries, uterus etc. still perform certain functions that help us get through our later years. We don’t even know today just what these organs continue to do after menopause and the totality of how they continue to influence our other bodily organs, including the thyroid gland.
Most of the following symptoms began about a year after my DaVinci hysterectomy and oophorectomy and include:
- Varicose veins
- Constant constipation
- UTIs
- Pain throughout my torso that is elicited by just a light touch
- Extreme dryness
- Extreme mood swings
- Suicidal thoughts
- Cognitive difficulties
- Serious depression
- Unexplained weight gain unresponsive to diet/exercise
- Huge growth of breasts
- Constant backache from the “apron”-a horizontal lump of flesh and drop of the abdominal structures from the cutting of suspensory ligaments and muscles
- Vision problems with extreme dry eyes
- Panic attacks
- Occasional loss of balance
- Sexual difficulties
- Nerve tingling and pain
- Severe pain in both lower legs from calves to ankles with no obvious source
- Joint Pain
- Painful lipomas on upper thighs
- Movement of section of lower colon down to the pelvic floor. This sometimes necessitates manually pushing it back into place in order to complete a bowel movement.
I live with constant fear of cancer on a daily basis. It has made my life miserable, increased my depression tremendously and has resulted in a number of suicidal ideations which I don’t tell anyone about because I don’t want to be put (again) in any kind of mental institution or subjected to the criminal like treatment I received while on suicide watch at the medical center. Never.
Absolutely NONE of the above effects were ever mentioned as possible outcomes from the hysterectomy/oophorectomy surgery. My life has been drastically changed for the worst. I refuse to go back to any gynecologist and/or oncologist because the very thought causes me extreme anxiety. From the lack of empathy, post-op care and refusal to give me my proper medication in the hospital, the rupture of blood and ensuing pain from treatment of the hemorrhage, I cannot bring myself to let a doctor touch me again.
I Was Railroaded
I feel as though I was railroaded from that first visit to Dr. C’s office. The da Vinci robot was marketed to me as though it were some type of miracle device. I was never told about some of the problems that have since been associated with this type of robotic surgery, and that I was used as part of a money making scheme despite the fact that the rest of my life would be changed forever.
Regardless of my objections, I believe their insistence in having a mammogram after the biopsy procedure violated my right to refuse any and all treatments. I am concerned that all the radiation I received between the mammograms and the biopsy will have deleterious effects on the rest of my life.
The fact that heart disease is widespread throughout my immediate family and my diagnosis of Reflex Sympathetic Dystrophy should have been sufficient to warrant serious consideration regarding this procedure and whether or not I was truly a candidate for it. Being thrown into isolation for just expressing my fears and being treated like a hard core felon was unnecessary and resulted in extreme mental stress and anxiety. I feel I was a victim of a system which saw a means to make money without any regard for other approaches to treatment or the quality of life that would be lost forever. All courtesy of an uncaring and greedy medical establishment that believes that our life producing organs are of little to no consequence while there is money, lots of it, to be made through the use of scare tactics and the “it’s always been done this way” approach when certain types of (potential) cancer is found. In other words, we are dispensable when it comes to increasing the bank accounts of all involved except, of course, the victimized patient.
© October 2015 Sharon A. Hutchinson
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