Libby’s Abdominal Hysterectomy
Age at Surgery 56
Location: Palo Alto, CA (USA)
Before my medical issue began I thought I was in menopause. I had gone 7 months without a period. I know menopause is 12 months with no period but I was 56 and had always been regular before it just stopped. Then I got the longest heaviest period in my life and it was SCARY. I went to the doctor and they ordered a pelvic ultrasound, I knew from watching the technician that something was wrong. Shortly afterwards I received a call from my doctor saying that I I had a mass, the size of a large orange, where one of my ovaries belonged and it might be ovarian cancer. She ordered a Stat MRI. The MRI confirmed the mass had all of the characteristics of ovarian cancer and it identified other concerns. I was referred to a GYN-Oncologist.
The GYN-Oncologist told me that in her opinion there were equal chances it was benign, malignant, or borderline. We agreed that since I needed to have it removed regardless of which it was and because of the other things seen in the MRI that I should have surgery asap. There was no point in going through an uncomfortable biopsy first, which would have delayed the surgery, I just wanted whatever it was out of me.
I was at a top tier medical group and immediately had confidence in the GYN-Oncologist, plus her recommendation was consistent with the regular GYN and supported by the MRI so I didn’t seek additional opinions before deciding to have surgery. I did discuss it with my neighbor who is a semi-retired doctor and she agreed with my decision.
So, from the time from my medical issue first appeared until the time I had surgery was less than a month. Because there was a possibly I had ovarian cancer, along with other issues identified in the MRI, a TAH-BSO was the only surgical option.
I had a general anesthetic plus an epidural and was in the hospital for 5 days/4 nights.
I had a pre-op appointment a few days before my surgery and was told what to expect. At the pre-op appointment, I was given a special anti-bacterial soap to wash with the evening before and morning of the surgery.
My surgery was scheduled for mid-morning but once I was in the pre-op area my surgery was delayed several hours because the patient ahead of me in the operating room I was scheduled for took much longer than expected. The GYN-Oncologist (surgeon) and anesthesiologist stopped by to see me while I was waiting; I was their only surgery patient that day. The surgeon hugged me when she arrived. The anesthesiologist assured me that she saw on my pre-op notes that I had extreme post-operative nausea and vomiting (PONV) with a prior surgery and she said she would begin medications for that before I even woke up. Their assurances were comforting.
It was about 4pm when I was wheeled into the OR. The next thing I remember was being wheeled to my hospital room post-surgery, I think it was around 11pm. I don’t remember opening my eyes but I was told afterwards that I’d said some silly things.
The first time I remember opening my eyes and waking up was about 5am the next morning when a nurse came into my room. I remember telling her I was hungry so she brought me the menu and told me that I could call room service at 6am to order breakfast. As I became more awake, I noticed that I had an IV in each hand (they had placed a 2nd one after I was unconscious) and a catheter.
Early that morning a team of residents and the surgeon came to see me. The surgeon told me the preliminary (frozen section) biopsy for cancer was negative but they needed confirmation from the complete biopsy, which would take a few days. After they removed the bandages, I noticed that I had a very long vertical row of staples that nearly came up to my belly button. I remember telling the surgeon I had a headache and she asked if I normally drank coffee, when I said yes she said it was probably caffeine withdrawal and she suggested the nurse get me coffee.
The people from the lab came to take blood regularly, initially twice a day, then down to once a day. Based on the blood tests they infused two things into the IV. They also gave me an IV of saline; it caused me to really puff up. The surgeon considered an iron transfusion but she decided it was not necessary because I was regaining some color in my cheeks.
At some point my first day after surgery they got me up with a walker. After I could walk they removed the catheter. I was eventually circling the nurse’s station several times and eventually without a walker. The first day or two they always had someone walk with me.
Between naps, I talked and texted on my phone. Family and friends came to visit. I discovered that I could order 30-minute in-room massages, so I ordered scalp and foot massages a couple of times during my hospital stay. I have to say the hospital food was good and there were a lot of choices on the menu, but I wasn’t very hungry (I wish that lasted).
On the day I went home the surgeon told me my final biopsy was complete and it confirmed everything was negative so that was great news.
Looking back, I am left with huge admiration and appreciation for the nurses.
My initial recovery was easier than I expected once I was home from the hospital. I think that was because I was comparing it to an ankle surgery I had a year earlier when I was unable to walk for 2 months post-surgery.
The good news was that the anesthesiologist did a great job with infusing me with anti-nausea medications starting before I woke up, so my recovery was much better with the hysterectomy than with the ankle surgery from that perspective.
The staples were uncomfortable and I was very glad when I was able to get them out. Having them removed was uncomfortable. There was an area of the incision that was dimpled and pulled. I needed to have the physician assistant look at it a few weeks after the staples were removed. The PA told me it looked like a stitch was pulled too tight and she suspected a resident did all or some of the closing stitches. It eventually got better.
About a week after I got home I suddenly felt very dizzy one morning and thought I was going to faint. I unlocked my front door, sat in a chair, and called my next-door neighbor who is a semi-retired doctor. She came over immediately and told me I was doing too much too soon and I needed to lay down and elevate my feet above my heart. I was careful to move slower afterwards; just doing a few household chores exhausted me.
My energy level has not fully recovered yet (now 9 months post-surgery). I have brain fog, often feeling overwhelmed and have difficulty concentrating. Four months post-surgery a GYN PA attributed it to hormones and prescribed an estrogen patch. Improvement is 30-50%, depending on the day.
Last week I had an appointment with my primary care doctor, an internist, and she ordered complete blood work. It was the first time my blood was checked since I left the hospital. The blood test showed that I am still very anemic.
I was initially put on disability for 6 weeks and that was extended by another month or two from a paperwork standpoint (I can’t remember). Having said that, I started working again as soon as I got home from the hospital. I work for a consulting company, can often work at home, and was afraid I would lose my clients if I took off more than the week I was in the hospital.
I’ve had no worries about life after hysterectomy. My greatest challenge has been trying to muster up enough energy to get my work done so I don’t lose my job.
I am glad I had the hysterectomy, no question about it.
The energy/brain fog. concentration issues are challenge but I’m confident it will be solved now that we’ve identified that it’s due to iron deficient anemia. My PCP has also referred me to a hormone specialist.
I think I sort of fell through the cracks because my surgery was performed by a GYN-Oncologist so that department was responsible for my post-op care, then because the biopsy was negative (fortunately) I became a low priority patient to that department..
Two pieces of advice:
1) Completely read your post-op instructions multiple times throughout your recovery. I thought I was told that I did not need iron supplements, but that was wrong and I just discovered it 9 months post-surgery when I read my instructions again today. I remember the surgeon saying it would be best to rebuild my iron on my own and I thought that meant without supplements. After re-reading the instructions, I now realize she meant without a transfusion, not without supplements.
2) Listen to your body and follow-up with your doctor if something does not feel right. Throughout the time I’ve been experiencing energy/brain fog/ overwhelm/concentration issues I made the mistake of dismissing these feelings and telling myself to think positive. I thought that if I acted like I felt ok, told everyone that I felt great, and hid my exhaustion, that it would lead to me feeling better. I was wrong.