Important disclaimer and such: I am in no way a medical professional and none of this should ever replace actual medical information. Pretty sure you all already know that, but just putting it out there.
One week ago today, I was rolled into an operating room and woke up with one less internal organ than I’d been born with. As you know, I’ve been dealing with endometriosis for at least 7 years now… Likely longer given that the average time for diagnosis from onset of symptoms is about a decade. Medications and lifestyle changes weren’t really working, and I was sort of running out of options there. (The next level of medication would likely be Lupron, which induces a false menopause. No thank you.) Oh. And also there’s the little matter that my uterus itself was glued* via adhesions to my intestines. So that’s a fun little complication. Given everything going on, something had to go. #GoodbyeUterus
I had what is called a LAVH — or where they inflate your belly to a giant beach ball, put a few holes in it*, then still pull your baby cooker out through your lady bits and sew everything up. Except the holes, those get glue. It went successfully. There were “extensive” adhesions between the uterus and colon, and apparently also some adhesions between the uterus and the bladder. I got to keep my ovaries and tubes — which as a still young 30-something, neither my doctor nor I were interested in putting me through menopause yet.
Now that I’m a week out of all of this, I’ve got some thoughts/tips on dealing with a situation such as this…
» The anxiety really is one of the worst parts. For me, getting as much information as I could helped. As well as completely distracting myself (hello 90 hours of Breath of the Wild!).
» Join Hystersisters. While the forum design reminds me of early 2000s with the glitter emotes and all, it is a very good resource for information. Of course, take it all with a little caution, these aren’t medical professionals, just a massive community of thousands of women who’ve had all types of hysterectomies for any and all reasons. I did not find “my tribe” or make any new BFFs from the site, but have appreciated the support. Just be prepared for some women to come off all “well, I’ve had this and now I’m the expert.” I had someone try to educate me on endometriosis despite the fact that she’s never had it.
» Prep the house. For real. You can’t do much after the surgery… so make sure your family, friends, roommate, whomever is on board with taking care of everything else for you. My roommates knew before they moved in that this surgery was being planned and they’d have to spend a few weeks doing all the house work and taking care of the cats. But on top of that, get your spaces set up for your recovery. For me, that’s my bed. Make sure you have enough room for all your stuff (I even had a tray table on the bed for the first 4 days so stuff was in easy reach) and you have plenty of pillows and blankets.
» If you don’t have someone to cook for you, start freezing meals for your first week or so of recovery. I made a lot of soups and stews — granted, two of them didn’t survive — and it makes it easier for my roommate to just take something and heat it up for me rather than have to cook something for me. Go light on salt and grease, and watch the gassy foods. Veggie noodle soup was my favorite just coming home.
» Write down any questions you have for your doctor. Also take notes during the pre-op visits.
At the hospital/Observation
» You’ll spend most of your time pre-surgery having various nurses and doctors coming in to ask you questions and take vitals and hook you up to things. Be completely honest with all of them. Before you know it, they’ll wheel you into the OR, hook you up to more things, and then tell you “ok so in 20 seconds this is going to kick in” and everything will go completely black.
» You may do or say weird things as you come out of anesthesia and start to wake up. One of the first things I asked about was if I could pee or if I was cathed and could pee… Then the next time I woke up I asked it if was all lap or not — since there was a chance they may have had to switch to an abdominal surgery. Then mostly I was just looking back and forth trying to wake myself up. I’m sure I looked strange, but they’ve probably seen and dealt with stranger.
» Your overnight bag. Ok. So some women go home the same day, others, like me, go home the next, and still some stay for a few days. It depends on the type of procedure and the intensity of what’s going on inside you that they need to remove. I way overpacked. I brought a laptop, iPad, chargers, notebooks, slippers, extra sports bras & underwear, toiletries, slippers, a flannel overshirt, a book… All I used was my cell phone and my charger. (And my insurance & ID cards.) My room had a tv and frankly, if I wasn’t watching HGTV marathons I was talking with visiting family or sleeping.
» You may puke. Make sure the vomit bag is within reach. Between the anesthesia, empty stomach, pain killers, and sweet beverages… yeah… I couldn’t keep things down for most of that first day out of surgery. I think I was more bummed about this because I couldn’t have the rest of my cherry Italian ice (which is considered clear liquid diet approved).
» Use that call button. When I could finally have real food, the orderly put it too far away on my table, and so I stupidly reach and pulled for it to be closer. Bad idea.
» The packing (or as my doctor called it, “the 9-foot tampon”) is the worst. The catheter isn’t fun either, but it helps not having to get up all the time to pee. (And yes, you’ll have to pee all the time. You just won’t really notice because of the catheter. I ask my nurse about this, and she looks over and goes “you’re peeing right now.”)
» You’re supposed to be able to pass gas, pee, and walk on your own before they send you home. I made one bathroom trip and the nurse currently on duty started my discharge papers. My dad made a comment that I looked nervous about all this. YEP. I wasn’t sure I was actually ready yet.
Recovery at Home
» FYI: you use your ab muscles for everything. Everything. They just cut into them, so everything is going to hurt now. Try your best to find a comfy spot and stay there.
» That first poop is going to hurt a lot. Some women compare it to child birth. Not even joking. It’ll probably be a day or three before your first BM, so start some stool softeners. TMI? Well, you just had uterus ripped out of you so… Oh. And yeah. Be prepared to just fart a lot. Gas-X will be your friend. Don’t hold them in.
» Ask for help. I did too much the first few days and regret it. Mentally you’ll feel ready to do everything. Heck, you’ll likely be a little bored, too. But don’t. Let someone else. If people offer to help, let them. Especially when it comes to food. It was a little weird having to depend on my 20-something year old roommates to do everything… but we got over it.
» USE YOUR SPIROMETER. It’s this annoying little breathing exercise thing, but it’s super important for helping with all that trapped gas as well as making sure you don’t get pneumonia. If the hospital didn’t give you one, just be sure to take long, deep breaths.
» Have nightgowns/sleep shirts you like. I slept in my jersey cotton dress for the first two days after surgery. Then finally switched to a stretched out tshirt. Finally my mom bought me a Batman night shirt.
» If you don’t get extra mesh underwear from the hospital (or buy some online), be sure to have larger than your normal sized underwear at home. Make sure the band doesn’t rub on your incisions. Also, apparently you can hand-wash the mesh ones they give you, so maybe don’t just throw them away like I did.
» No matter how much you may want to: do not mess with the surgical glue. I picked off a couple drops that were nowhere near an incision — even the nurses laughed at how messy they were with some of it — but that was it. It’s supposed to dissolve eventually. No scrubbing in the shower either — which is maybe the harder thing to remember.
» If you’re not used to sleeping on your back… Sorry. I’m a side and stomach sleeper. This has not been easy for me. Thankfully I’m too drugged up to care.
» Take and track your pain meds. I’m using an app called Medisafe. It’s not perfect (why I’m not linking them), but it is helping. I want it to be where I just set it to “every X hours” so once I take a pill it’ll let me know when it’s ok to take the next, but I have to set up specific times. Which works ok as long as you’re thinking straight when you set them up.
» Call your doctor’s office if you need to. It’s best they know what’s going on if you have a concern and also they’ll know what to do. Even on weekends, there’s a doctor on call.
» REST. It’s really hard to not do stuff. But your job is to heal. It’s not to worry about the litter box, the trash, the dishes, or the vacuum that someone accidentally broke. REST.
People will think you’re getting so much better before you really are. Which is especially true if you’re like me and don’t always show your physical pain emotionally. One of the roommates commented on day 2 or 3 of my recovery, “Oh, you look like you’re feeling really well!” I laughed. Nope. This hurts. Some of the hyster-sites suggest even when you start to feel a little better, keep dressing like you aren’t — because apparently once you look OK, everyone will treat you like you’re OK.
Most importantly: you don’t have to share any details of this procedure that you don’t want to. Of course, be honest with your doctors and nurses, but you choose to whom and with what information you want to give out. And if you don’t want them to talk about your stuff with others, tell them. There’s nothing wrong or shameful about having a hysterectomy (or any surgery), but it’s your body and your choice.
Overall, the recovery is going well. Yes, I still hurt and get sharp bouts of pain… but overall it’s been well. Especially now that I’m letting myself just rest. Only one incident where one of the cats walked across my incisions, but other than that they, too, have been troopers.
One week down, five more to go.
*My first laparoscopy notes used the words “densely adhered.”
*I was told 3 holes, like my first laparoscopic surgery.. but woke up with 5. The adhesions were a little more intensive than they had first thought.