Hysterectomy Recovery

It’s been almost one entire year since having a total hysterectomy with salpingo-oophorectomy.  That means they took out my uterus, cervix, one remaining fallopian tube and both ovaries.   Such a big name for removing relatively small things.  After surviving a long journey of getting pregnant and losing babies, the universe ‘gifted’ me several more years of suffering through what I now know was early peri menopause and uterine fibroids.  When my doctor agreed that a hysterectomy was the best course of treatment I was beyond thrilled.  I was so excited to have organs extracted that I threw a Uterus Eviction Party.  (read more here: https://justbefearlessandfree.com/post-1/)  Why wait almost a year to write about recovery?  Well, because it’s taken this long to feel somewhat balanced.  I won’t say to feel back to normal, because I’ve learned (am learning?) that normal no longer exists thanks to surgical menopause. 

First things first – do your homework and find a doctor that you trust, who will partner with you to develop a tailored care plan.  Hysterectomy’s are common, but your body and your medical situation is unique.  This surgery is a big deal, treat it that way.  That starts with your choice of doctor.  Is the OBGYN you’ve seen for years also a decorated surgeon and menopause specialist?  If not, you might want to consider making a change.  I had been going to the same OBGYN office for years and years, and while they were friendly and capable of annual check-ups, I sought out and secured a new care team to support me through the current phase of life.  Was this hard and exhausting?  Yes.  But was it worth it?  Also yes.  I had several consultation appointments with various practitioners until I found the right fit.  You need to make the right decision for you, advocate relentlessly and find someone you are comfortable with that can provide real solutions. 

I liked the new doctor from the minute he walked into the room.  He had already reviewed my complicated medical history, but asked me to explain my story, why I was sitting in his office and what my expectations were.  It wasn’t until that conversation that I realized just how badly I wanted a hysterectomy.  My reproductive system had caused nothing but emotional pain and trauma for 15 consecutive years.  The ‘fun factor’ had amped up the last year as I had been living with horrendous physical pain and mental anguish thanks to a giant fibroid that had taken up residence.  I was ready to say good riddance!  He went over multiple treatment and surgical options and said his recommendation would be to move forward with a hysterectomy.  I could have hugged him.  Finally!  A medical professional who wanted to help me feel better.  He then proceeded to lay it all out for me – the surgery method, how long the procedure would take, what recovery would be like, how long I’d need to be off work, potential complications……. all of it. 

The plan for me was robotic assisted laparoscopic surgery to remove my uterus and the one fallopian tube I had left.  The big question mark (for me) was ovaries.  Leave them or take them?  This debate takes place in every online group I belonged to and there are strong opinions supported by conflicting science.  It’s not like women experiencing menopause is something new.  Every single woman on the planet (literally!) will go through this.  Why are doctors not more educated?  Why does this transition feel like such a mystery?  IT’S BEYOND FRUSTRATING.  I digress.  After a very long discussion about my medical situation and the pros and cons of each scenario, the decision was to leave my ovaries unless they looked suspicious.  I trusted my doctor to know if they needed to be removed.   

Having had the opportunity to let the reality of surgery sink in, I was most worried about what recovery was going to be like.  If you’re like me and research the shit out of everything, you’ll discover that some women have surgery in the morning, are home by lunch and two days later they are back to work and running a 5K.  I have NO IDEA how they recover that quickly, but good for them.  My advice, don’t compare your journey to anyone else’s.  Educate yourself, listen to your body and to your doctor and follow the post op instructions given.  It’s not a race and you can’t speed up your body’s ability to heal no matter how hard you try.  I am a very active person and taking it easy was the hardest part of recovery for me.  The restriction instructions I followed looked like this:  No lifting or pushing anything for 6 to 8 weeks.  This meant no vacuuming the house, or pushing a grocery cart.  No bending over to load or unload the washing machine or dishwasher.  No driving until I was off pain meds and felt comfortable wearing a seat belt.  No pool, hot tub, lake, ocean, bath tub…..and no sex…..for 12 weeks.  What could I do?  Walk.  Unlimited walking (without a weighted vest).  I walked as much as my body would allow.  I ordered myself a new pair of shoes and by the time I was cleared to resume normal life, the bottoms of those shoes were in tatters.  I essentially traded an entire Midwest summer to spend the rest of my life pain free.  Despite the ongoing hormone balancing act, the sacrifice has been worth it! 

• If you’re taking a leave from work, give yourself more time than you think you’ll need to get all of the necessary paperwork taken care of.  Your employer and insurance company will need various forms filled out by you, by your doctor’s office and you’ll likely have to coordinate things to get the right signatures on the correct form into the virtual hands of whomever needs it.  All of this can be frustrating.  Get it done early so you don’t have to stress about it later.
• Line up your care team, you’re going to need help.  For how long depends on your specific circumstances.  For me, timing to introduce normal activities and types of exercise was evaluated 8 weeks after surgery.   Same with returning to work. 
• If your insurance requires a pre surgery biopsy like mine did – prepare yourself.  I can’t believe this is done in an exam room, without any numbing.  Not to be dramatic, but it’s the worse pain I’ve ever experienced in my life and I feel strongly that you should be given general anesthesia.  It’s barbaric torture.  Shoving a red hot fire poker up your vagina would hurt less. 

• Stock up on all the things you think you’ll need for the next two months.  This meant a big trip to Costco and Trader Joes.  Other things to pick up:  whatever laxative your doctor suggests, over the counter pain medicine, peppermint and ginger tea and cough drops.  Don’t forget the cough drops.  I popped one of those every time I felt a tickle in my throat.  There is nothing worse than a coughing fit (or sneezing) after abdominal surgery.
• Think about how you are going to fill long hours of doing nothing.  I bought things to entertain myself like coloring books and puzzles, downloaded things to my kindle and made a list of movies to watch and series to binge. 
• Pay attention to everything you use regularly around the house.  Do you have to stand on your tippy toes to reach your favorite coffee mug?  Is your favorite omelet pan on the very bottom shelf?  Are there things in the basement freezer that need to be brought to the main floor incase stairs are difficult to maneuver?  I moved all of the regular use items to counter level, even if that meant creating clutter that would drive me crazy later.  Doing this was SUCH a smart move. 
• Consider getting a couple of little baskets to keep things you use often next to you.  Having kleenex, chap stick and cough drops next to my bed and next to the reclining chair I was living in in the family room was super handy.
• Order a weeks worth of postpartum underwear a size bigger than you think you’ll need so the top band can be pulled high to avoid your stitches.  And pick up some thin panty liners too.  There shouldn’t be a lot of bleeding by the time you get home, but there will be some.
• Think about the clothes you’ll need for the hospital and for the first couple of weeks at home.  I basically lived in light weight drawstring pajama pants two sizes bigger than my normal, baggy tank tops and front close bras.
• Pack your hospital bag.  Things I took that I actually used:  toothbrush, toothpaste, chapstick and a battery and cord to charge my phone.  Yes there was a wall outlet, but it wasn’t close enough to the bed to be useful.  I also took slip on shoes as part of my loose fit going home attire.

I had an arrival time of 5 am, was in surgery by 7, through recovery and into my own room after lunch.  Some people head home the same day.  I cannot image having to do that.  The lingering anesthesia effects combined with pain meds had me feeling pretty out of it.  I was  hooked up to an IV drip bag and also had a catheter that was to remain in place until they made sure my bladder was in full working condition.  When I was with it enough to notice, I couldn’t believe how HUGE my abdomen was.  I knew that it would be swollen from the gas they pumped into me during surgery, but I wasn’t prepared for just how inflated it would be.  What goes in, must come out and that takes a few days.  The gas will move around and settle into strange areas.  For me it was my left shoulder blade.  The dull ache developed into a constant throbbing pain overnight.  Temporary, but annoying and painful. 

If you’re encouraged to get out of bed and move around, do it.  I knew that my body would have only one chance to heal and I wasn’t going to screw that up.  I took recovery and following the directions very seriously,  treating it like my full time job.  That started in the hospital.  They wanted me drinking a ton of water and up walking as soon as I could.  So I did.  Drinking water was the easy part.  My mouth was so dry.  I had an unquenchable thirst from being knocked out with a tube down my throat for four hours.  Ask for popsicles! Not only will they help rehydrate you, but the cold felt great on the raw throat. Walking was slow, but I did hallway laps every couple of hours all night long whenever there was someone available to be my chaperone.  I couldn’t be trusted to roam freely being high on pain meds and hauling IV wires around.

Remember that debate about ovaries?  Fibroids had blocked the view of both ovaries on the pre surgery scans so my surgeon was seeing them for the first time on surgery day.  Turns out that one ovary was shriveled up like a raisin and the other one was covered in cysts.  Both came out.   This was so validating!  Now I had actual proof that I wasn’t crazy.  Between nonfunctioning ovaries and fibroids no wonder I had been feeling so miserable for so long.  After learning that pathology came back negative, I started to wonder what surgical menopause was going to be like.  I had already been using an estrogen patch and naively thought that was all I needed.  Organs out, patch on good to go….right?  HELL TO THE NO!  If I knew then what I know now, I would have refused to leave the hospital without progesterone, testosterone and a laundry list of vitamins and supplements. 

My at home care team was amazing.  Mom came to stay with us for a week and together with my husband they took care of every single thing.  My job was to rest and they did everything else.  Before I even thought to ask for a smoothie one would magically appear.  They laid around and watched movies with me….well….mostly together as I slept a lot.  My pain pills were delivered on a schedule that I didn’t have to remember.  They made a hard time almost fun and I’m forever grateful.  Friends and co-workers sent care packages and neighbors dropped off muffins.  I felt the love.

Random things that might be helpful:

• We live really close to the hospital, and I was thankful for a short drive home.  I used a little pillow under the seat belt so it didn’t dig into my stitches.  That helped, but man!  Every little bump in the road was felt to my core.  Ouch!  Hugging that pillow to my middle section while walking, trying to sit up and god forbid when coughing or sneezing was a LIFE SAVER.  Highly recommend having a little pillow handy at all times.
• Take the pain pills even if you don’t think you need them for the first few days.  You’ve just had pieces of your body removed.  The remaining organs are going to shift around and settle into a new home.  You don’t want to feel that.  Your bladder and bowels will randomly go into fits of spasms.  You don’t want to feel that either.
• If you didn’t feel the “surgery gas” overnight in the hospital, chances are you will feel it when you get home.  Take whatever combination of gas X and Miralax chews your doctor suggests.  Peppermint tea helped too.  Walking was the best medicine though.  Nothing crazy.  Maybe a lap around your dining room every hour.  Do what you can to get things moving.
• Until your system gets back to normal, you might want to eat bland soft food.  I lived on smoothies, scrambled eggs and toast.  I had no appetite really, but knew I needed something in my stomach to take with the drugs.
• You might feel an extreme heaviness in your abdomen and pelvic area.  For me that lasted three or four days before starting to subside. 
• Theres also a phantom tampon feeling also comes and goes.  That was a crazy feeling….like an oversized dry tampon was shoved up there and you would do anything to yank that sucker out.   This is normal swelling.  Annoying, but normal.
• I couldn’t lay down flat or sit in a chair that wasn’t in a reclined position.  We have an adjustable bed so I was able to get somewhat comfortable by raising the head up and building a pillow fort around me to keep from rolling over.  We moved a reclining chair into the living room and as long as I was tilted back, I could watch TV or read or color.  You might want to invest in a wedge pillow, or see if you can borrow one from a friend.  At the very least, have a bunch of pillows ready to stuff behind you for support. 
• You’ll learn each day what your body can and can’t do.  It’s crazy how much core strength is needed to do things like open a new jar of salsa verde, push the cup into place on my ninja smoothie blender or just sit upright in a chair.

Listen to your body and don’t overdo it.  Get up and move around as much as you can handle.  For me this meant slowly, very slowly getting out of the recliner I had been living in and walking to the kitchen and back.  I graduated to walking out of the house and down the drive way and then down the block and then around the block as I slowly built up my strength.  Whenever the dull ache in my abdomen or the phantom tampon feeling returned, I knew that I had done too much.  Sitting at a table to work on a puzzle for fifteen minutes would wipe me out for the entire next day at first.  Every week you’ll feel noticeably better, like clockwork.  You will probably feel like you can do more than “the rules” allow.  Don’t push it.  Those restrictions are in place for a reason.  There’s a lot of healing that needs to take place internally.

Other things I experienced:

• Getting in and out of bed slowly gets easier, but sleeping on my side was a no go for at least six weeks.  Once you experiment and find the sleep set up that works for you, you’ll start to feel like a new person.  A well-rested new person.
• It’s ok to be a hermit.  Eventually I felt like visiting and friends stopped by for short visits.  But at first, I just didn’t have the energy to socialize.
• I had a two week post op checkup and by that point I knew I needed hormonal support.  The patch just wasn’t enough.  I cried at EVERYTHING.  Writing out a grocery list sent me in to hyperventilating ugly crying.  My doctor upped the dosage of the estrogen patch and sent me home.  I realized at that appointment my doctor was an incredible surgeon, but he was not a menopause specialist.
• It feels like finding a menopause specialist is harder than finding a unicorn.  Once you find one, there’s usually a very long wait to get an appointment.  I don’t know what’s worse – having a hysterectomy, leaving your ovaries and experiencing menopause the old fashion way or having your ovaries yanked out and getting thrown immediately in to surgical menopause.  A slow drain of your hormones over time or abruptly shocking your entire body?  Regardless, you’re going to want to have someone on board to help provide the support you need.  Don’t wait to do the leg work, make an appointment before your hysterectomy. 

Almost one year later and what an incredible difference!  I’m back to my regular active lifestyle and I think (hope) I’ve reached a place where my hormones are staying consistently regulated.  I don’t think I realized just how much daily pain I was living with until everything was removed.  Every time I open a purse that hasn’t been used in a while I get extreme pleasure in throwing away the tampons stashed away in the inner pocket.  I can confirm that life feels a lot lighter on the other side. 

Would love to hear about your experiences or help answer questions you might have.  Drop them below in the comments.  Good luck with your journey!