I am sitting here about 1-week post op from my “total hysterectomy.” Before I start to get too foggy on all the details and how I ended up here, I figured it was time to tell you all about my experience. ETA: I am finishing up this blog post 4 (and now 5) weeks post-hysterectomy. Why? Because surgery can make you damn tired, that’s why! Also because summer, life, kids, puppy, travel, all those things can make it hard to get pen to paper . . .
To begin, WHY? Why did I have this done? My journey started in 2008 when I had a cervical cancer scare. I was 28, about to be engaged, and was looking forward to days soon ahead when I would be pregnant and have kids. I remember my first meeting with my doc and him saying to me – distinctly – “10 years ago, this would be an automatic hysterectomy.” I don’t think I could think, hear, or see straight after those words. The only thing I had ever known for certain my whole life was I wanted to be a mom. I wanted to have babies. One of my best friends was struggling with infertility and IVF treatments and through her I felt the heartbreak of failed cycles and the fear of not holding my baby in my arms. Feeling her fear of not having kids of her own amplified my fear of losing my uterus.
Luckily, through a cold knife cone/LEEP procedure, the doc was able to get the “bad cells” and over time I had 2 babies of my own with no complications. Whew! The doc called these “bad cells” stage zero cancer or CIN-1 . . . better known as “adenocarcinoma in situ.”
I need to say this though. Because of this scare, we started trying for a baby right away – even though it was before the wedding. Not “trying trying” but not “not trying” either. You likely know what I mean because I suspect most of us have been in a similar boat at some time. That first baby took 3 years to come. Coupled with the time where I was fearful about losing my uterus, that is almost 4 years of worrying about not being able to carry, breastfeed, provide from my own uterus, have that baby bump, and have my own kids. That is a lot of worry – especially from someone like me who is not an innate worrier. (I am a 7 on the enneagram, my go to is how can I have FUN . . . not what can I worry about today).
Fun fact: first baby took about 3 years and 3 hours of pushing to come out. Second baby took 2 months and 2 pushes to come out. Kids are funny that way, huh?
Fast forward some time later, the cervical cancer scare came back. To hear more about that ordeal, please read my post here.
Any who – what came as a result from that second LEEP. No cervical cancer. WHEW! But they did find endometrial cells in my cervix = weird and knew something must be going on that shouldn’t be. Doc gave me 3 options. 1) Wait and see and come back in 3 months; 2) I honestly don’t remember – I think a uterine biopsy; or 3) Hysterectomy time. I opted for the third. I was ready. It was time. This doc helped me have my babies and now it was time to get rid of that “pesky” uterus so I could erase the fear of cervical cancer coming back.
ETA 4 weeks post-op: From the pathology of my hysterectomy, the doc was able to confirm that it was the same thing as 2009: “adenocarcinoma in situ of cervix.” What does that mean? The LEEP somehow missed it (or perhaps all of the timing was just right) . . . but if left untreated, I would have had full blown cervical cancer. What else does that mean? While the pap or LEEP didn’t show it per se, the fact that the pathology came back abnormal was the big red flag we needed.
Here is the play by play of the actual hysterectomy procedure as I can best recall it. I share this with you so you know what to expect if you are about to have one too. I share this with you so you can share this post with someone else if you don’t know how to put your experience into words. I share this with you so you feel a little less alone or a little less scared.
The Pre-Op – 2 Weeks Before – Morning Of
About 2 weeks before the procedure, I went in for blood work, etc. I was instructed to take no Ibuprofen, etc. for 10 days prior. The day before I was to consume TWO 20 ounce bottles of gatorade. That is A LOT! That stuff is SWEET! I like my normal hydrate 100 x better – but from what I have read, the doc wants that real deal gatorade in you pre-op because of the heavy carb load to help your body with surgery, the anesthesia, and recovery.
The night before I was instructed to wash down with 1/2 a bottle of Hibiclens which I was able to find on Amazon – thank goodness.
The morning of the surgery I was to consume ONE 20 ounce bottle of gatorade. That was a BLESSING – while I would rather be able to drink water – at least I got to drink SOMETHING!!! My surgery was at Noon, so it was nice that I was able to get in a short workout (Shaun T!) and was still able to quench my thirst too!
I also used the other 1/2 of the bottle of the Hibiclens.
The Pre-op – At the Hospital
First thing first you take a pregnancy test. They never tell you what the pee is for, but after you have done this a few times, you figure it out. They had me change into 2 gowns, one opened in the front, the other in the back. They measured my calves and ankles for compression socks. You push and pull those on – they are TIGHT, but I secretly love them. It feels like some sort of therapeutic leg treatment. This is when my nurse tells me I am an anomaly and we both laugh. Next comes the super cute hospital grippy socks.
(Note: I had an extra step here. Sorry if TMI – as luck would have it, I was on Day 3 of my last ever menstrual cycle. I wasn’t sure what to do! They gave me those mesh granny panties with a pad. Apparently this is so they can just cut them off in the surgery room).
The worst part of pre-op? The IV stick. This time it was interesting because the stick was first used to draw blood (to type me in case I would need a transfusion) and then right away the same line was used to hook me up to the IV. I hate that thing in my hand. It is weird, annoying, and awkward. But – after watching my husband with one in both of his hands for 5 days straight earlier this year and hearing him complain not an iota – I sucked it up.
The part that surprised me. I got 3 different medications (that I remember). They gave me tylenol, 5mg of oxycodone (more on this later), and a patch behind my ear to help with nausea (scopolamine).
The Operating Room
Then it was go time and the tech nurse came to get me to wheel my gurney to the operating room. As careful as he was, it still felt like Mr. Toad’s Wild Ride. I usually need to close my eyes for this. But he said the best thing on the way to prepare me for the operating room: “There are going to be a lot of people in there and every person has a job. Think of it like a pit crew at the race car track. We all work really well together and work to take care of you.” I don’t remember his name, but that visual was everything and it helped me feel not so scared to see like 15 people in the OR.
The operating room was huge! The tech wasn’t kidding about the amount of people. I was transferred to a skinny metal bed and was instructed to scoot down (no, scoot down some more) – ladies, you know this drill – we can never ever scoot down enough to make anyone happy can we!? I don’t remember much but a crazy gel pad right under my back. Everyone introduced themselves (not that I could keep them straight). The anesthesiologist (same one from the LEEP) told me she was going to put something in my IV to help me fall asleep. She had also explained I would have a breathing tube (I was asleep when this went in and when it came out – thank God). There may have been oxygen as well, but quite honestly – I forget!
The Recovery Room
Next thing I knew I was in the recovery room. While I was not in pain per se, the discomfort was REAL. You wake up thinking you will feel okie dokie due to the pain meds and anesthesia but I felt NOT ok. I just wanted to escape the weirdness and the discomfort. I just wanted to sleep. But every time I fell asleep, my heart rate would go down to the 40’s, the machines would all bleep bleep bleep, and they’d wake me up and my nurse would say my name until I talked back. I understood why. But that was ANNOYING!!!!!! It is so hard to describe how I felt. It wasn’t a stabbing sharp pain. It was like deep deep bruises all over my insides and I just felt weak and awful and just ick. But ick to the point you needed pain meds so you could fall asleep and get some peace.
The Next 20 Hours and Overnight Stay
Finally I was transferred to my room where I could sleep in peace (sort of). Hubs was able to come in, but bless his heart, I was so darn tired I wanted to see or talk to no one. Again though, because of his surgery the month before, he got it. He let me be and didn’t need me to talk back and was cool when I told him I needed quiet. I think I got to my room around 3PM and he was allowed to stay until 6.
When you are in your room, you are still hooked up to an IV, still have in the foley catheter, and have the added device of the leg compression machine that continuously massages your legs to prevent blood clots.
My number one goal in all of this was to be comfortable. Pro Tip: bring the comfiest fluffiest blanket you can. One of my dear friends, Katie, had sent me the softest blanket to keep me warm and cozy while in the hospital with the hubs and I packed it to take it with me to my surgery as a last minute decision. Thank GOD! That thing got me through the night. I could cuddle it, I could switch it from side to side to provide some compression to my abdomen, I could have its fluffiness on my face, I felt very loved by that blanket (I don’t know how else to describe it). I just know that the fluffy blanket made everything 10 x better. When I was feeling too HOT to use it (I was running very very warm!), hubs could keep warm under it because hospitals are COLD! Don’t know what to bring someone in the hospital whether they are a guest or repeat visitor? A blanket like this is everything.
Being comfortable also meant taking the pain meds and not trying to be a hero. This was hard for me. We all hear the horror stories about oxycodone. We all hear the stories of addiction. Hubs was equally as nervous before his surgery and I was surprised to see he barely needed anything besides tylenol after his OPEN HEART surgery! At first, I tried to compete with him and turned down the oxy. But . . . I felt pretty terrible. It is hard to explain the pain. Like I said before, it is not sharp and stabbing – it is really achy and dull but never ending. So, I took off my cape and said yes . . . and felt better. I was careful and only took it when I absolutely needed it. More on this below.
I wasn’t expecting the nausea. Thank goodness I never actually got sick, but there were two close calls while I was in the hospital! Tell your nurse when this happens – there are meds for that which work and work fast!
I also wasn’t expecting to not want water AT ALL (probably because of the nausea). The bad news here? I wasn’t producing enough pee (I know I should say urine, but I am just not that grown up yet). This meant it took awhile for my foley catheter to come out. Even then, my production was still low and my nurse threatened if I did not start producing more that they would have to put it back in and I would not be knocked out this time. Ok, got it, that was all I needed to hear. I ramped up my water consumption. Slowly but surely I got used to drinking water again.
Once the catheter was out I got up and walking. I had heard from so many people that after a laparoscopic surgery that all of that air they pump you up with has to go somewhere and that to get it moving and out – walking helps. Otherwise it could be pretty painful. I was terrified of the pain I heard about that would crop up in my shoulders and neck (I go to the chiro for a reason and that is where allllll of my stress sits). Luckily, I barely had this (whew!) and the only real telltale sign for me that I had air accumulated in my shoulder was a gigantic shoulder pop one morning (my joints pop a lot as it is) that actually felt heavenly! If you find yourself with all that air pain – get up, get walking, and as straight as you can. I have also heard NOT to drink from a straw. I did and didn’t really have issues – but we are all different – so maybe that tidbit will help you!
In any event, I made sure to walk – which began with feebly shuffling around my hospital room. Trying my best to walk straight and tall and not all hunched over. Then I graduated to a loop around the hospital floor. And that was TIRING!
About sleeping overnight at a hospital. Yeah. I maybe got 2 hours in a row max – lots and lots of people check in on you . . . usually right when you finally are getting some good sleep. Again, I get it. It is the nature of the beast. I kept the TV off, I put my phone away, I cuddled the blanket. My goal was as much sleep as possible between the poking and prodding sessions.
The Actual Surgery
While we are talking about laparoscopic surgery – let’s explain what that meant for me. I had a robotic assisted surgery and my surgeon (Dr. Dwight Im at Mercy) used the da Vinci robot. I am not even going to try to put all of that in my own words, because I was conked out for that. But here is what I know:
He made 5 small incisions which is where all of the actual surgery happened and removed my fallopian tubes, uterus, and cervix (in one piece transvaginally). I kept my ovaries. If he had removed them, I would have gone into menopause (no thanks) and this way I don’t need hormone replacement therapy.
When I first saw my scabs, I said, those aren’t small! But here they are 1 day post-op and 33 days later they are already fading away really well! The two highest ones fell on skin lines I had anyway and in time, I doubt you will see much of them at all. For scar cream, I use this stuff when I remember and started it after the scabs fell off (actually my doc ripped them all off at my 3 week post-op visit – I would let the professionals do that and NOT attempt yourself!). There is also some healing going on in the inside (when they remove the cervix, they need to make a vaginal cuff). I don’t feel that all and have experienced zero pain up there. Whew. You can still see a little bruising under my belly button.
All in all I spent about a full 24 hours in the hospital, was discharged in the morning, and was told to go home and REST.
Rest and Recovery at Home
And rest I did.
I let my hubs do all the cooking and cleaning. I let my mom take care of the kiddos and be their chauffeur for the week. I let my cousin organize a meal train. I let my aunt drive all the way from PA with pre-made meals. When I was up to it, I let my friends fly in from around the country and do all the dishes and cooking. I had to get comfortable saying YES to people who wanted to help. Side note: people really want to help! You are actually doing them a favor to when you say YES! You are letting someone else be helpful to you. Don’t be shy. If they offer, say yes! If they don’t know what to offer, suggest something concrete and specific.
A few months ago, we bought a special electric recliner for the hubs for his post-surgery recovery and that thing came in handy. It was really hard to engage my abs to get in and out and up and down so I was able to bring that thing to a standing position which got me in and out much much easier. I read. I napped. I watched 2 seasons of Manifest. I ate saltines. I drank hydrate like a boss and at all times. I took my IBuprofen around the clock. I sipped on chicken broth until I was ready for food food. I let myself just BE.
About that oxy. I needed it for about 3-4 days post op. Not around the clock, but when I could REALLY feel my insides. Imagine feeling a big old painful bruise on your insides everytime you moved. The oxy helped with that. But the minute I could switch to IBuprofen (the 800 mg one), I did. And I needed that for about another 2 ½ weeks. Yup – I needed pain meds for 3 freaking weeks. That surprised me too. I was able to take less and less – but when I would just start feeling “weird” and sort of achy – the IBuprofen helped. I tapered that down too, went from the 800mg stuff to the over the counter stuff to once a day to nada. Yes, my stomach felt torn up. Yes colace (or this generic brand) is crazy helpful. Don’t forget to get that stuff on the way home or put in your amazon cart! It was a miracle worker and the last thing you need when your insides feel awful is to have your GI insides feel awful too. No, Aleve did not work for me in the same way. (Aleve is my go to for headaches because it doesn’t destroy my stomach, but it didn’t work for me here).
A note on recovery. I pushed it on week 2. Don’t do that. I started to get my mojo back. I THOUGHT my energy was back to normal. Ha. I did some laundry. I did some light picking up around the house. I cut a watermelon. Again, don’t do that. Cutting that watermelon put me on my butt for about 3 hours to recover. It is going to be hard to rest, but DO it. I learned. I took another week and sat my butt DOWN whenever I could. I dd that for the rest of Week 2 and Week 3.
So. Here I am 4, almost 5, weeks post-op.
I am feeling MUCHO better and pretty much back to normal. I am DYING to work out . . . but know I just need to wait 1 more week (August 2!) and I have committed to begin with low impact dancing workouts and prenatal workouts to get me back to where I would like to be in terms of my usual cardio and lifting weights.
All in all, I am glad I made this decision for me. It was 100% the right one. It was scary. It was sad in some ways. The recovery was harder than I anticipated. However, there is a lot of joy in NO MORE PERIOD EVER AGAIN! The scars are smaller and fading faster than I could have imagined, and as the scars fade . . . so will the memories of it all.
Please feel free to share your journey of your hysterectomy below. Please feel free to ask any questions about what I said and maybe what I forgot about and left out!
Rooting for you and your recovery. Xoxo