It was April 2007, I remember seeing my gynecologist for the second time that year and receiving the same painful test, revealing that I had pre-cancerous cells and required a hysterectomy. I was then directed to see a gynecological oncologist for further testing and another opinion. I was not too scared at this point, being it was pre- cancer and not actual cancer yet. Little did I know what was ahead of me.
When I went to see the specialist, he said that I had endometrial cancer, and needed a hysterectomy right away. I was so devastated by the news, scared and confused, me cancer? This was May of 2007, my upcoming 42nd birthday was on the 18th, and here just a few days short of it I was being prepped for a full hysterectomy. I remember before going in how scared I was. I had to sign affidavits that said if they bumped into other organs such as my bladder they wouldn’t be responsible. All the risks involved were also listed, even death. I had no choice. I had to get this emergency surgery, because the cancer was pretty bad.
A Hysterectomy From Hell
The last thing I remember before my surgery was counting down. Then I awoke to the IV in my left wrist, blood just oozing out of it, and all on the sheets. I thought someone shot me because there was so much blood. I also woke up with the gurney underneath me, which they forgot to remove before placing me in the hospital bed. I was confused and hurting so badly. After attending to me with these complaints, I was cleaned up and given a morphine pump for pain, which didn’t even take the edge off. I remember crying in such pain for many long hours, and no one could do anything with my pain management. Two hours after the hysterectomy, I was made to get up and walk. It was so very painful, I thought my stomach was about to come out and hit the floor. I did their painful exercises and was sent home five days later.
At home it was no picnic either. I had a young school aged daughter at the time. My mom was tending to her, so mostly I had to tend to myself. I finally got the chance to look at my surgery site in the mirror, and it was like a horror show. I was cut open from side to side, hip to hip, and had large staples closing the wound. I had a draining hose on each side of the wound. I felt like crap, looked like the bride of Frankenstein, and didn’t have a hospital bed and so I couldn’t easily get up to go walk or to the bathroom. Each time I pulled myself up I thought I would pop those staples out. Each painful step I took, I thought my stomach would just flop out.
The Callousness of My Physician
Two weeks later, I went to see the doctor who did the surgery for a follow up. I asked him, “why do I feel and look the way I do?” “He said what you mean,” very sarcastically. He said I just had a triple surgery. I said “what?” “Well,” he said, “beside the hysterectomy, we had to give you a panniculectomy because there were lymph nodes in there and we couldn’t take the risk of the cancer spreading. Then we had to give you an appendectomy because you had fecal matter in there, and that would have later erupted.”
My mouth stood open with disbelief. I could not believe there was so much wrong with me. Then he said the drains still needed to stay in and he would be sending in a nurse to my home to show me how to empty the drains. He said in six weeks I would be healed, and that I could go back to work then.
I was feeling like a barrel of pooh, mentally and physically and he is already planning my life. I went home. I did all my exercises. I was still in pain. I lost feeling on the outer part of my stomach, had trouble going number two, and my mental health was getting worse. At the 6-week check-up, he took the tubes and the staples out, and tried to write me a note to go back to work. I told him that mentally and physically I wasn’t ready. He didn’t like what I said. I told him that he bumped into my bladder and that I leak urine and have to wear pads now. He said “we told you this might happen and you signed papers.” He said, “I’ll write you out for another six weeks, but then you have to go back.” I was feeling like I didn’t matter. My feelings didn’t matter. What the hell? I know how I feel.
I went home started to feel anxious and get more depressed. I began having flashbacks of trauma that I experienced in early childhood that wasn’t ever dealt with. I wondered why this was happening to me. Haven’t I suffered enough? I decided to see a disability lawyer. She was kind and wrote me a letter to give to my doctor to give me more time, and she didn’t charge me. I went back to him. He took a copy of it, wrote me out again and said “when you return this is it, you have to go back to work.” That is when I went to my job and started to collect disability. While I did that, I fought for my disability. It took several times, but I got it. After all the fighting, I had a nervous breakdown, and went into a mental health facility. I was getting help for my issues that weren’t dealt with in the past. It took years to work on myself. All these years, I noticed my physical health deteriorating. I went to the doctors and told them my horror story. Of course no one wants to put blame on what the surgeries did to me physically, only my mental doctors supported the fact that my surgeries caused my breakdown.
Where I am Now
Today I suffer physically from the hysterectomy. I have no sexual libido and no feelings or wanting to have sex. Thank god I have a fiancé who has been through the whole thing with me and who completely understands. I suffer bladder leakage, recurring UTIs, which are very painful, hot flashes, dried out cracked skin, spinal stenosis and neuropathy caused by the stenosis, and sciatica nerve issues from the stenosis. Mentally, I suffered from PTSD, severe anxiety disorder and severe depression.
After 13 years, I am doing better now mentally. I am back working, but still collecting some disability. I have my own place with my fiancé and my dog. If you ask me was I happy with my hysterectomy, my answer is yes, because it eliminated the cancer, but it came with a deep price, the pain and suffering that I will have to live with for the rest of my days.
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Lisa – I’m so sorry for all your suffering. I know all too well how you feel. I have also been traumatized and irreparably harmed by the removal of my organs. My gyn, whom I had trusted for 20 years, used cancer scare tactics to rush me into the operating room. He should have removed just the complex cyst or one ovary when the frozen section was benign but he gutted me anyway. 15 years have passed since that day and although I’m doing much better than I was those early years, the regret and feelings of betrayal are always there. Writing articles for Hormones Matter has given me an avenue to educate others as well as process my feelings.
Thanks for sharing your story. I wish you the best in the years ahead.
I am sorry that you went through that too , thank u for educating others on here , I wish you the best in all you do , take care ❤️
Dear E. S . Thank u so much for reading my story, and commenting, I agree with you in all aspects of the way people are being treated with Drs. I feel good to have gotten my story out to hopefully help Drs and patients to make better decisions when it comes to this touchy matter.
So sorry you had to go through that Lisa. The diagnosis is stressful enough but the lack of compassion drs have these days is horrible. Sometimes I wonder if the majority of medical students are push by their parents to become drs when they have no true interest in medicine or helping people. I miss the way drs used to behave; taking the time to explain things fully, discuss options and the plan moving forward with recovery—they actually treated you like a human being. Nowadays they gaslight, dismiss, deny, shame and blame patients for their health issues. It’s almost like they don’t want you to have a normal quality of life —like it’s the strangest thing in the world to ask for. It took me 12 from the start of my worst symptoms to finally get my Endometriosis diagnosis, but I had gone through so many drs & specialists I wonder if there ARE any good ones out there anymore. It’s a sad state of affairs when we can’t count on drs to do their job like the trusted professionals they used to be.