My hysterectomy experience (long post)

Hello to all my Hyster Sisters!

A co-worker of mine had a hysterectomy earlier this summer due to endometriosis and found your site. When I found out I was getting a hysterectomy too, she referred me. This is my first post, but I have read many of your posts and have gotten great advice and support from them. So, I thought I would tell my story in hopes that it will help someone as well.

I was diagnosed with breast cancer a little over a year ago (July 23) at the age of 39. I had a lumpectomy and then a series of radiation treatment. My oncologist and I discussed chemo, but decided that the risks outweighed the benefits I would gain (I was node negative and my reoccurrence score was in the grey zone). I finished radiation mid-November of last year and was totally fatigued from it. I hooked up with a personal trainer to help get my strength back and have been with the trainer ever since.

I’m on Tamoxifen, an anti-estrogen drug that has thrown me into a pre-mature menopause and also messed up my cycles. Every time I had irregular bleeding, my oncologist would send me to the GYN for an ultrasound to check my ovaries, uterus, etc. They found minor problems here and there, but nothing serious. However, I got tired of this routine and eventually suggested they just give me a hysterectomy. The GYN agreed and the oncologist said that having my ovaries removed wouldn’t be a bad idea since I was getting the hysterectomy anyway. After all, estrogen will no longer be my friend and I really really didn’t want to do menopause twice in my life.

So, on Oct 13, I had a full laparoscopic hysterectomy – ovaries, tubes, cervix and uterus. I have three small incisions; one in my belly button and two just above each hip. I stayed one night in the hospital with a catheter. My first milestone for release was being able to pass gas. That happened about 10 hours after I got out of surgery. The next morning, they removed the catheter and said I could go home as soon as I could pee. I started drinking water and coffee like nobody’s business and peed about 90 minutes later. Unfortunately, I was having some really strong pain on my right side so they made me stay for about 5 more hours until the doctor (and ALL the residents, med students, etc. could check it out. They determined it was fine and sent me on my way.

Before the surgery, I had lined up several friends to stop by to help me out. I live alone with two cats. I had my regular cat caretakers come to do cat stuff (change water, fill food dishes, etc.), I had a friend come to fix lunch for me and another friend come to fix dinner for me. A few others would come by from time to time. I left the back door unlocked during the day so they could walk right in without me having to get up. The friends were great!! But here’s the thing… I had people coming by about every 3 hours during the day. I’d wake up about 9 am, have my coffee and some fruit for breakfast and by about 11 am, I was ready for a nap, but friend #1 got there at 11:45. We would do lunch, she would load whatever dishes into the dishwasher, fill my water jug, pick up a bit for me and then leave. I’d be up for about another 30 minutes and then need a nap. But, the cat caretaker would get there about 3:00. I wouldn’t get up for him, but we would chat for a bit and then I would be awake for another hour or two before drifting off to sleep, then the dinner friend would show up at 6:00. She cooked dinner, we ate around 6:45/7:00 and then she left around 7:30 after loading the dishwasher, setting up the coffee maker and cleaning up again. By then, I was totally exhausted. If I had it to do all over again, I think I would have ONE visitor each day to get me set up for the rest of the day or the next day.

After only 6 days of this, I started laying off the caretakers. I was completely able to take a pre-cooked container of some sort of food out of the freezer and microwave it. I was also able to make a pb&j sandwich, or cut up an apple. As long as I didn’t have to bend over to fetch something out of the fridge or lift any heavy pots or pans, I could do it. Loading and unloading the dishwasher was something I needed help with and if I happened to drop a fork or something on the floor, it would stay there until someone came along to pick it up for me. Uninterrupted rest was what I really wanted!!

Around day 4 I was feeling pretty good. I was still on the Lortab and Ibuprofen but I was able to get out of bed in less than 20 minutes. Then I took my two steps backward (like mentioned on the board). My right side started hurting like it had that first day in the hospital. It started on a Saturday and I knew if I called the doctor’s office I would get some yahoo who would tell me I needed to go back to the hospital. That’s the last thing I wanted to do. So I waited until Monday, but then on Monday morning, it felt better again. I think what happened was I rolled over during the night and slept on my right side when I shouldn’t have (I’m a side and stomach sleeper). I think I just aggravated things a bit.

On my second week, things started feeling better and better. I started getting some of my range of motion back. My right side was still the most painful (I felt like my insides were exploding when I sneezed). I still had to struggle a bit to get out of bed, but it got easier. Oh, I forgot, I had my first bowel movement 5 days after surgery. It wasn’t as bad as I thought it would be, but ya gotta take your time and let gravity and your colon, not your abdominal muscles do the work.

About day 10, my life got a bit complicated. My 17 year old cat started gasping for breath. I thought she was going to die. I quickly called a friend who immediately came over to pick up me and the cat to take us to the vet. All of my pain disappeared. Before that moment, I wasn’t able to pick up a piece of paper off the floor, but I managed to scoop down and pick up my 12.5 lb cat, cradled her in both arms as I got in and out of the car and even managed to snatch her out from under a chair she had hidden in at the vet’s office. A little voice inside me told me I was doing tons of damage to myself, but I was too worried about my little baby. Luckily, I was no worse for the wear and it actually kicked me into being more mobile (not recommended!!). The cat is fine, but is dying of kidney failure. We’ve been back to the vet 3 times. The last time I drove her myself.

Two weeks after my surgery I returned to work part time (in sweat pants!). I worked 4 hours the first day and 6 hours the second. My post op appointment with the doc was that 2nd day. She said I was healing fine. She said the right side pain was because that was the instrument that got the most movement and wiggling around. The doc showed me pictures of my former uterus and ovaries. She said my bowels would be filling in the vacant area. Apparently, I have some sort of temporary net over the area where my cervix used to be that will prevent my bowels from binding to the vaginal cap. That will dissolve in about 6 months, she says. She gave me the go ahead to go back to work part time, but I am to be mindful of my body’s messages and rest when I feel tired. She says I can go back to the gym for light cardio and stretching as soon as my right side feels better. My lifting restriction has been bumped up from 10 lbs to 15 lbs – wahoo! I’m still not allowed to vacuum – oh darn!

I continue to have some light spotting, but it barely fills a panty liner in 4-5 hours. The panty liner does start to smell a bit before it actually gets ½ way filled. I can sleep on my side and my stomach now, but I have to turn slowly to get in those positions.

Here are a few things that have surprised me…

First, my hot flashes and night sweats have subsided a bit. I’m still on the Tamoxifen so my body isn’t even taking advantage of the little bit of estrogen still being produced (ovaries are the primary source, but other body parts produce estrogen too). I figure this is my body “in shock” and those symptoms will return. There is nothing I can do about that.

Second, mid-way through my radiation treatment I started getting fatigued. I couldn’t even open a jar of spaghetti sauce because my muscles felt so weak. This fatigue, from the hysterectomy, is different, and in a way much worse. I can walk up a flight of stairs without feeling like my legs are going to buckle under me, but by early afternoon, I can barely keep my eyes open. I get so dang tired and I never feel fully rested. Caffeine just doesn’t work for me. I’m off all the pain meds, but I just get so tired so early in the day. As soon as this right side pain goes away, I will resume my cardio (slowly) because I feel like it is my only hope to combat it. I eagerly await the day when the doctor says I can resume my weight lifting regime. If only I can stay awake through them.

Welcome TK01!

Glad to hear you made it thru the first couple of weeks of recovery! It was great to read your post - brings me back in time - i loved all of your detail!

First of all let me say how sorry am i to hear your baby is dying of kidney failure. i know that one well - we had our girl die of it last year. its tough - theyre our kids! i would have done the same thing you did - scoop, cradle and go.

i am now 6.5 weeks out. i had a TAH BSO and just returned to work yesterday. i felt stronger every week. some weeks it did feel like (as the book say) i was taking 2 steps forward and 1 step back, but it does get better!

wishing you peace, love, blessings and a speedy recovery!

I am so glad that you are feeling better but so sorry that you have had to deal with the added worries of your cat.

I laughed about the care plan interrupting your rest, I felt like that sometimes too :-)

I can't imagine coping with the hysterectomy so close to your cancer treatment so I take my hat off to you for coming through this so well.

I hope you continue to recover well

hugs

Katy