Thank you Ms. Robin Karr for sharing the startling and personal story of your bad experience. We are all with you in your grief and sense the depths of your despair. It is my goal to make this a New Beginning though, for women to understand hysterectomies and the real complications that do happen. Together, we can be strong. Together, we can make a difference. Thank you for starting.
Sunday, January 27, 2013
"I Said 'NO'"
This is by Guest Blogger, Robin Karr
‘I Said NO’
On July 30, 2007, I met the man who would change my life forever. This man wasn’t my husband-to-be or my first-born child. He wasn’t the pastor who baptized me either. The man who changed my life forever was a doctor; more specifically, a gynecologist. Our first meeting was on July 30, 2007 in his office in Cincinnati Ohio. From here on out, I will refer to this doctor as ‘the doctor’. I refer to him in this way because I didn’t know him – not really.
The reason for this meeting was an enlarged abdomen – enlarged to the size of a woman six or seven months pregnant. By the time of our meeting, I was forced to wear maternity clothes. I had no idea what could be wrong with me but I was scared. The doctor performed a pelvic exam and told me that my uterus was prolapsed and asked me if this caused me any problems. I told him that I was aware that my uterus was prolapsed and that I had no symptoms. He said that I could be fitted with a pessary if my condition ever became a problem. Further, he said he didn't know why my abdomen was enlarged but said he’d order some labs.
I already knew my uterus was prolapsed via my other doctors through the years, but I’d never had problems or issues. No other doctor ever mentioned my needing to do anything about it and they didn’t refer to it as a ‘condition’ either. Most women who’ve had children go to their grave with a prolapsed uterus. That is unless a doctor removes it…
I was deeply attached to my uterus since it was home to all three of my precious children, but especially my two youngest. My two youngest children, Matthew and Laura, were abducted from our home in Kentucky by their father during a routine visit in 1998. He eventually gained full custody in Texas with the help of a father’s rights judge and my children never came home again. Even though I carried Matthew and Laura in my womb and gave birth to them, I don’t know them. They were only one and two at the time they were taken… I explained to the doctor that my uterus was all I had left of my children and I told him that feeling it inside of me gave me great comfort. He seemed to understand…
I had a couple more visits with the doctor but still he could not determine why my abdomen was so enlarged. My labs and other tests all came back normal. In fact, my estrogen level indicated that I was nowhere near menopause. Near the end of August, the doctor finally told me that he could perform a laparoscopy on me to examine my pelvic organs. He said he could do this in September. I agreed.
I met the doctor on September 25th for a pre-surgery consultation. He told me that he imagined my uterus was enlarged as well as prolapsed and, if so, he would need to remove it for my abdomen to return to its normal size. Reluctantly and after asking many many questions, I reminded the doctor about Matthew and Laura and about my determination to hold onto my uterus. But, he assured me that my enlarged abdomen would most likely require its removal.
When I questioned the doctor about complications, I was assured there would be no complications. He told me he’s performed hundreds of hysterectomies. In hindsight, this statement should have bothered me… I asked if I needed my uterus for physical reasons and he said "It's a useless bleeding organ for a 46 year old woman." I asked him about if my sexuality would be affected and he said "I'm not operating on your brain". And then he laughed. When he mentioned that he could remove my ovaries if I wanted him to, I asked "What would I do for hormones if you took mine?" He said "I'll simply replace what I take away at a cost of about $15 a month."
We also talked about the fact that I had a pituitary tumor as a child which had compromised my endocrine system. Finally, I told the doctor that I've had too traumatic a life to take a chance on allowing removal of any organs that didn't need to be removed. I explained to him that I had taken good care of my one and only body all of my life and that I wanted to keep it as intact as possible. He seemed to understand. His last words to me that day were "It would be better to err on the side of caution in your particular case and not remove the ovaries. If they ever become a problem, they can always be removed at a later time."
Feeling as if I’d told the doctor how I felt about my body and life and feeling as if I’d asked all of the important questions, I finally agreed to allow the doctor to remove my uterus, but ONLY my uterus. The doctor and I signed a surgical consent for removal of ‘uterus only’. My fiancé at that time was a witness to our conversation and the signing of the surgical consent.
Two days later, I arrived at the hospital for surgery and I was presented with a NEW consent form to sign. The wrong surgery was listed. According to the new consent, all of my healthy female organs were going to be removed with the exception of my cervix. I told the nurse that this was not the surgery I agreed to and I refused to sign the consent. I was especially alarmed about my ovaries being removed. Further, I told the nurse that I didn't want to have any surgery unless and until I spoke with the doctor.
The nurse told me she’d find my doctor and let him know I wanted to speak with him. After she left my room, another nurse came in and said he was going to give my something to relax me. I told him I didn't want to be given any medication because there was a problem with the surgery. I explained that I had not signed the consent and that I was waiting to talk to the doctor. As I was protesting, he injected my IV with Versed and I was immediately knocked out. My last waking memory was seeing the nurse inject my IV. Even though I said “NO”, the nurse put me to sleep.
My family told me that after I was knocked out, an O.R. nurse came into my room and told my mother to sign the new consent I had refused to sign a few minutes earlier. (My mother wasn’t aware she was signing that consent). As soon as my mother signed the consent, I was taken to surgery. This all took place within a matter of minutes…
I woke up in recovery. However, I didn't realize that I’d even been asleep. I thought I was still waiting to speak with the doctor. I wasn't aware two hours had passed or that I had had surgery. I thought only minutes had passed. And, I thought I was still waiting to speak with the doctor. A nurse I didn't recognize told me that I was in recovery and that a total hysterectomy had been performed on me. I began crying and asked what organs had been taken. She said “Everything; you have nothing left.” I said that I wanted to die. This is noted in my record. I don’t guess I need to say here that it’s not normal for a patient to wake up from an ‘elective’ surgery wanting to die. Even though I said “NO”, I was put to sleep and I was gutted and castrated! I said “NO”!
From the moment I woke up in recovery, I knew that I was no longer the woman I had been for the past 45 years. And, I have not felt like that woman since… Not only did I not feel like ‘the woman I had been’, I didn’t feel like ‘a woman’. I instantly lost interest in all things sexual. This is such a profound loss... I'm not sure I can adequately express this kind of loss with mere words. This profound feeling of the loss of my feminine essence and sexuality would be only the beginning of many losses.
Initially, I was prescribed Premarin by the doctor who performed the hysterectomy. Premarin is a synthetic hormone which is made from pregnant mare's urine. It is not in any way similar to a woman's estrogen. My body couldn't tolerate it so I began doing my own research and learned about bioidentical hormones. Eventually, I made the transition to bioidentical hormones but it wasn’t easy. I first tried an estrogen patch and progesterone and testosterone creams. The patch didn’t seem to help me at all and irritated my skin to the point of making my skin appear burned. The creams were messy and they didn’t seem to work either. Finally, after changing hormone doctors and hormone prescriptions several times, I found that bioidentical hormone pellets worked best for me. They are very expensive though – approximately $3000 a year. I began taking compounded estrogen by mouth and estrogen and testosterone pellets are inserted into my hip every three months.
Hormone replacement is not without risks but for women who can't produce their own hormones, there is little choice but to go on HRT if they want to function and stay even semi-healthy. I also take many supplements and vitamins since the surgery - especially Calcium and Vitamin D. I take a special Omega supplement for my dry eyes. I take biotin for my hair, skin and nails. I also take a Complex B Vitamin, Zinc, Vitamin C and Magnesium.
Even though I've been on bioidentical HRT for the past three years or so, I don't feel even remotely like I did before the hysterectomy. I have chronic insomnia. Sleep seems to be a thing of the past. I have difficulties with memory and concentration. Other people finish my sentences for me because I lose my concentration and just can’t seem to grasp the word I’m looking for. This is another profound loss since I used to teach English and work as a writer. Everything dried out after surgery; including my skin, nails, hair, vagina and especially my eyes. I lost a lot of hair and continue to fight hair loss. My once healthy beautiful nails are brittle and seem to break for no reason. Having a dry vagina is painful and bothersome all the time. I’ve tried using estrogen creams but they’re expensive ($150 a tube) and they don’t seem to work.
Possibly the most troubling of all dryness, I developed severe dry eye disease which is beyond miserable. It’s debilitating. The cost of caring for my eyes that no longer have their own natural protective tear/oil film is great; considering time and money. I've had two corneal ulcers due to having no ovaries/estrogen and no eye protection. This is a very painful condition and causes loss of vision. I’m legally blind in my left eye now. I can no longer see well enough to drive. I’ve lost a lot of independence.
There have been physical changes since the surgery as well. My pelvic organs have shifted down into the empty space left after removal of my female organs. Within eight months of the surgery, I was diagnosed with third degree bladder prolapse which causes me to have to urinate constantly. This condition alone has very adversely impacted my life. Chronic constipation is also an issue now too. I won’t go into the details here on how I have to manually force stool out of my body. I endure chronic lower back pain from the surgery. For the very first time in my life, I have a problem with weight gain. I have to consciously work at not gaining weight. Regardless, I’ve gained at least ten pounds. Belly fat is much more of a problem since the surgery due to ovary removal. This is really troubling since I already have an issue with my abdomen being enlarged.
Depression is a very real and serious consequence of hysterectomy and especially ovary removal. There are chemical and biological reasons for this. I have severe and even suicidal depression since the surgery. I attempted to hang myself five months post-surgery. I have nerve damage in my vagina, vaginal walls and lower extremities. There have been times I couldn’t walk and had to use a wheel chair. I developed thyroid disease within the first year of ovary removal so I’ll be on thyroid medication for the rest of my life. The problems I've encountered with regulation of my body temperature due to thyroid disease have made hot flashes seem mild in comparison.
I’ve faced a lot of trauma in my life and from a young age but absolutely nothing has been as traumatic as coping with the trauma hysterectomy and ovary removal inflicted into my life. Even worse, I felt so completely alone; as if I was on an island of doom all by myself. Every time a new health problem reared its ugly head, doctors would assure me that I was imagining it. Then, they would promptly offer to refer me to a psychiatrist for antidepressants and therapy. For this reason, I created a blog site and web site where I wrote about my experiences and about my own research regarding hysterectomy, hormones, hormone replacement, etc. I wanted other women to know they are so not alone.
As a result, I've had many women contact me regarding post-hysterectomy problems. Most women encounter similar problems as those I’ve outlined above. Although the problems I’ve outlined above are devastating, I think perhaps one of the most devastating problems women face is the feeling of being betrayed by their doctor. Most women trust their doctors and are completely devastated once they discover the many profound changes that take place after hysterectomy and ovary removal are well-known to the medical profession. They don’t understand why their doctors didn’t tell them.
Anyone interested in hysterectomy information can find out what I’ve learned about hysterectomy, the adverse consequences of hysterectomy and the alternatives to hysterectomy via my web site at www.hysterectomyconsequences.com
I talk a bit more personally about how I feel about hysterectomy and about what happened to me via my blog site at www.hysterectomylies.blogspot.com
I recently created a Facebook site at www.facebook.com/hysterectomyconsequences and I have a Twitter account at www.twitter.com/jiggaz31
I can be reached by e-mail at email@example.com