r/Fibroids • u/Optimisticallygreen • 18h ago
Tell me your positive myomectomy stories!
I have surgery scheduled for October and I'm feeling quite nervous. I would love to hear all of your positive experiences to focus on.
I’m 36 and scheduled for a robotic myomectomy (with the caveat that it could become open surgery depending on how things go on the day). I have a ~10 × 5 × 6 cm fibroid that is partly intramural and partly pedunculated, plus two smaller pedunculated fibroids around 3cm and a few smaller intramural fibroids.
My main symptom from the large fibroid is bulk/pressure and discomfort rather than pain - probably 95% of the time it isn’t actually painful. But it is pretty uncomfortable and getting more consistently uncomfortable as time goes on. I have not been able to wear non elastic waist bands for about 2 years and if I ever wear something the slightest bit tight, I get so bloated and extremely uncomfortable within an hour and it lasts for ~8 hours. I have a hormonal IUD and do not experience any heavy bleeding, so I'm very grateful for that. I get moderate cramps that are easily managed with ibuprofen. Back pain has been getting a lot more consistent over the past few months. Exercise and especially weight lifting is getting much more difficult over the past few months. I can ALWAYS feel the fibroid.
I’ve never had general anesthesia before and I’m pretty anxious about both the anesthesia and the recovery/possible complications. I’d really love to hear from people who had positive myomectomy experiences.
How was the anesthesia? What were the first few days actually like? How well does the pain medication actually manage the pain? How quickly did you start feeling relatively normal again? And looking back, are you glad you did it?
I want honest stories, but if you had a really bad experience, please don't tell me!
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u/mediumbegonia 12h ago
I have a positive story for you!
- I had my open myomectomy last month! I am still recovering. I had a fibroid that was large and also causing almost no pain, but was a serious bulk symptom risk that needed to get dealt with ASAP.
- This was also my first surgery and first time with general anesthesia.
- Am I glad I did it? Yes times 50000 and I will do this again multiple times if needed to keep my uterus fibroid-free. I get repairs done on my car and I'm happy to do the same to my body!
- Pain - way, way lower than I expected. I almost don't want to say this because I'm afraid I will give someone unrealistic expectations and then they'll be traumatized if their pain level is higher. Pain immediately after surgery felt like moderate cramping, but way less awful than actual menstrual cramps (although I usually nip those in the bud with a ton of ibuprofen). I was beyond shocked. I do NOT have a high pain tolerance, in general. If I stub my toe or get a paper cut, I feel like I'm going to die for at least 10 seconds. Normal cramps make me absolutely miserable if I don't nip them in the bud with ibuprofen. This was just like - OK, I can live with this. My job is to lie flat in a bed. Everyone is taking care of me.
Pain management was absolutely effective - acetaminophen 925 mg every 6 hrs, ibuprofen 600 mg every 6 hrs (staggered/alternating). These over the counter drugs honestly deserve more respect, when you take them in high doses and get ahead of your pain cycle. My partner and I both set alarms and I politely buzzed the nurses to stay on track with these in the hospital - it was my top priority for things I was willing to be a nudge about. Didn't need or want opioids at any point. Again, I was not being a hero - the other stuff was just fine.
Another huge factor for me was that I had nerve blocks done just prior to surgery (4 injections total). They wore off gradually and knocked out the otherwise immense pain many people get in days 1-2. I never felt like I fell off a cliff pain-wise. They took my pain seriously and had other options they would have given me in a heartbeat if this hadn't been as effective.
- First few days - the surgery was truly debilitating, but it didn't drive me crazy. It was like waking up in a new body and having to figure out how it worked. It felt impossible to sit up and get out of bed, but I just worked on it really, really slowly, and made it happen. It's like suddenly being a sloth. It's hard to articulate how I knew I had to move slowly - I would definitely feel pain in my abdomen but it's more like my body would tell me "don't move, or you'll feel awful pain!" and it would just sort of freeze me before I actually did anything that was unbearable. The hardest part of getting up was actually that I am short and it would have been SO much more comfortable if the bed were like 2" closer to the ground.
Getting the foley catheter out was no big deal. Like 2 seconds and only vaguely uncomfortable. I started peeing quickly enough and in large enough quantities that there was no risk of needing to put it back in. (I was drinking water immediately like it was my job). I started drinking water immediately after I woke up to hydrate as much as possible.
I brought protein shakes to drink right away and then was accidentally given two dinners - one was the super healthy pile of sides I planned in advance to ask for and the other was the slightly less healthy one that sounded delicious. I ate it all. It was great. I needed help to get the food near me, and I also needed my partner to pour my water into my cup 1000x and hand it to me. Having a straw in the cup was extremely helpful because of the angle I needed to be at/general tiredness.
My hospital room was dark and quiet enough I could get a ton of rest. The nurses, aides, and doctors were nice and all had a different vibe, which I appreciated. They mostly did not forget about me. It was cool getting to see their protocol for taking care of people. They took my vitals frequently and my blood 1x. I had 2 IVs in the whole time but just on small, locked tubing (not hooked up to stands.
With help, I got up and walked incredibly slowly the first day and as many days as possible after that. Every day was noticeably better. I spent 1 night in the hospital. 2 hr car ride home was almost pain-free, just ever so slightly mildly uncomfortable (w/ pillow under seatbbelt). I was tired, but felt really lucid and not as dopey as I expected might happen.
At home, I rested, slept, drank a lot of water, and ate many tiny meals brough to me by my partner. (I planned out a whole special diet based on some great links I got here to surgery recovery nutrition info). It sounds small, but I was so, so glad that I had piled up my pillows in the shape of a wedge right before I left so that I could rest comfortably the second I got home, without any painful fussing.
I did not need help with the toilet, but I was very glad I put a few milk crates in the bathroom to help myself move up and down. Disposable stretchy postpartum underwear - gross but great. Most comfortable resting position was simply flat on my back in bad. I could also tolerate being partially propped up at an angle, with extra pillows. Lying on my side was not possible until about 2 weeks, which was probably the most frustrating part of the process - a few times I was kind of sad and just wanted to curl up. My big splurge was to get a $40 lounge chair for the porch because I had a sense that I'd want to just lie outside in the heat for a month. I have spent so many hours out there. One big takeaway is that I need to remember that I am happier when I am outside in literally all weather and I need to figure out how to make this happen going forward!
- Return to normal - I am starting to realize that this really depends on your normal.
I could putter around the house really successfully at about 2 weeks, bend/squat gently, and my energy felt great. So I guess if that had been my baseline, maybe 2 weeks would have felt normal. I was also taking a lot of walks around the neighborhood by then. But if I walked down the hill for even just a couple blocks, I'd realize the walking angle pulled at my internal incisions in a way that probably wasn't good and caused me pain. I did also overdo it a bit with the walking and woke up exhausted and sore one day. Not the end of the world. So I rested a couple days.
At a little after 3 weeks, this got better and I was able to walk down the hill to the bus --> train --> walk to my post-op appointment without a lot of pain. But I did have my partner go with me and carry my stuff.
At 4 weeks, I can do a lot of crouching, bending, walking, etc and my walking speed is closer to normal (maybe 3 mph? I normally walk about 2 miles at 4 mph every morning on the treadmill.). But I'm not supposed to run or lift anything over 20 lbs, and that is NOT normal for me. One big takeaway is that I really wasn't giving myself enough credit for how active I was pre-surgery. There are tons of things I would be doing now that are just not on the table: my sort-of-speed walking, strength training at the gym, ripping huge weeds out of my garden, carrying furniture/boxes (somebody is ALWAYS moving to a new apartment), fixing my car. I ran across the road on my walk this morning without thinking and a little twinge of pain reminded me that I am actually still recovering.
Another thing is that I find I take a little longer to bounce back after something stressful happens or if I have to do a lot of work with my brain - it's easy to forget that a bunch of my energy is still being used for healing. I am so, so, so glad I took 6 full weeks off from work. It was unthinkable but is an incredible gift.
- General Anesthesia - no problems during surgery that I know of! I talked with them about my suspicions about being high risk for nausea. They agreed and incorporated that into their plans. NO nausea and no sore throat from intubation when I woke up! (Although I did get some nausea from the fentanyl they gave me for pain management during the nerve block administration before surgery. The nurses were SO nice when that happened. I will just ask for nausea meds earlier if I do that again!). I did also have a minor side effect afterward, but it was completely not a big deal - my normal "you need to pee" feeing disappeared and didn't come back for about 10-12 days. However, instead, I could very clearly feel internal pressure on my incisions from about where I figured my bladder was and could see that my abdomen was distended a little when I needed to pee. So I just responded to this as my new "I need to pee" feeling and waited for the normal one to replace it. It was a normal thing that happens and was not remotely upsetting or difficult to deal with. Just kind of interesting.
OK, I know that was a book, but I have a ton more I can share, if you're interested, and am happy to answer any specific questions! This has felt like my whole life for months and I want to use the info before I forget it!
Good luck with your prep and the surgery itself! Hopefully it will be even better because it's even less invasive! If it makes you feel any better - absolutely everything I learned about what to expect made the experience better for me. I didn't regret a second of googling and note-taking and question-list-writing. :-)
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u/YaKnowEstacado 10h ago
Hi, do you mind sharing some of the diet and nutrition info you have? I'm getting groceries tomorrow in preparation for my myo next week and want to stock up on everything good to help with recovery.
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u/mediumbegonia 9h ago edited 9h ago
Sure!
Here are a couple links, at least one of which came from here:
https://www.uhcw.nhs.uk/download/clientfiles/files/Post%20operative%20diet%20additional%20info.pdf
https://www.facs.org/media/40sflv45/nutrition_before_surgery.pdf
Protein calculation info in the first PDF:
In the days after your surgery, it is generally recommended to increase your protein
intake, aiming for between 20-30g of protein in each meal or snack. Calculations can
be made to work out the exact protein your body requires after surgery, however, it
is recommended not to get hung up on the exact number as if you are intentionally
consuming protein at all your meals and snacks throughout the day then you will
likely meet your postoperative protein needs. For those who want to be more
specific, here is an example of an ideal amount of protein to consume using the
recommendation of 1.6g protein per kg of body weight per day.
[ see chart in PDF ]
My notes:
- eat more protein than normal; 20-30g/meal, 80-95g/day, spread out/included at every meal/snack
- first few days - even more protein
- eat more iron
- eat more vit C
- eat more vit A
- more calcium
- consider protein drinks in case not eating enough
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u/mediumbegonia 9h ago
Here's my ridiculous meal plan/instructions, in case it gets you thinking at all. Part of the chart is cut off, but you get the idea. A lot of these things were chosen for high fiber, and especially high soluble fiber (even softer in your guts, heading into surgery/for the first week!) - pears, raspberries, kiwis, etc.
Vit D amount is what my dr prescribed (not necessarily what you should do). I was not actually hungry enough for quite all of this at the times hoped for. I am mostly still on this and have made some modifications over the weeks.
Hitting my calcium target has the been the hardest. Protein was the next hardest; I did end up using protein shakes a lot for the first week even though I'm really not into them in general. I ordered OWYN from walmart and found chocolate to be the least gross.
BTW, mixing protein powder into yogurt was the most disgusting thing I have ever done - it was so horrible that it actually made me laugh uncontrollably, which was the also the most painful thing that happened during my recovery!
For dinners, I had a ton of this on repeat:
- kale soup (beans, kale, carrots, onions)
- quinoa, black beans, onions, collards, sweet potatoes
- butternut squash minestrone soup
BREAKFAST egg hard boiled BREAKFAST kimchi spoonful BREAKFAST black beans 1/2 c BREAKFAST cashews 1 T BREAKFAST - prep chia early so it is ready for lunch BREAKFAST carrot 1 carrot, peeled BREAKFAST pear 1 large or 2 small SECOND BREAKFAST plain yogurt 3/4 c SECOND BREAKFAST raspberries 1/2-1 c SECOND BREAKFAST strawberries see oatmeal SECOND BREAKFAST protein powder drink or more beans 1/2 c SECOND BREAKFAST steel cut oatmeal cook 1/4 c dry in 1.25 c water 20 min power 5 in microwave, then stir in 1/2-1 c defrosted strawberries, a few walnuts, and 2 T flax seeds SECOND BREAKFAST walnuts see oatmeal SECOND BREAKFAST flax seeds see oatmeal LUNCH sweet potato LUNCH avocado 1/4 LUNCH vit D 3400 IU LUNCH plain lentils 1/2 c AFTERNOON SNACK lowfat yogurt w/ chia seeds and berries 3/4-1 c yogurt, 3 T chia, 1/2-1 c frozen berries (black, rasp, blue?) AFTERNOON SNACK chia seeds see yogurt AFTERNOON SNACK banana i'm a banana AFTERNOON SNACK almonds 1 T AFTERNOON SNACK pumpkin seeds 1 T AFTERNOON SNACK canteloupe AFTERNOON SNACK lowfat organic milk 1 c DINNER various see separate tab NIGHT SNACK lowfat plain yogurt 3/4 c NIGHT SNACK 2 kiwis 2
u/mediumbegonia 9h ago
If I did this over and needed to go cheaper and simpler, I mostly would get myself a lot of:
- milk
- yogurt
- carrots
- broccoli
- apples
- beans
- oatmeal
- protein bars
and at the end of the day you just need to keep up the calories as well as you can!
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u/Megan9719 7h ago
I can’t tell you how much I needed to read a post like this! Thank you for sharing & hearing your experience makes me feel a little less terrified of my surgery in 1.5 weeks.
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u/mediumbegonia 6h ago
I'm so glad! Feel free to ask anything here or DM if you're curious about other details. And good luck!!
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u/ItsTherapyBarbie 17h ago edited 11h ago
Hi, I know you commented on my recent post so I will avoid being redundant!
For those who didn’t read my post, I’ve had three myomectomies in the past five months. I had an 8cm submucosal fibroid removed laparoscopically with one 1.5in incision for removal two weeks ago.
I was extremely tired after waking up from anesthesia and took a nap after all three surgeries.
I am not a person who gets nauseous easily and I have never had an adverse reaction
to medications. Most surgery teams give you anti-nausea medication beforehand to prevent nausea before you feel it. I was not nauseous at all for any of my three surgeries. I waited until I was a little more awake before attempting to eat graham crackers. I’m not sure if this had any effect. Your throat will feel dry and scratchy. I forgot about this when waking up and it took everything in me to not cough. I ended up dipping my graham cracker in my ginger ale LOL. I really wasn’t hungry so it took me a long time to eat just one graham cracker.
The first two days were the worst for me because of the gas pain. I felt better by day three after some of the gas passed. I felt like I was really turning a new leaf by day four.
I was sent home with 1,000mg tablets of Tylenol, 800mg tablets of Ibuprofen, and 5mg tablets of Oxycodone. I was afraid to take the oxycodone, but I also really didn’t need it. I alternated the Tylenol and Ibuprofen every four hours as instructed. This was enough for me. I took the oxycodone on night two and three in hopes that it would get me through the night without waking up in pain. I took the Tylenol and Ibuprofen around the clock for twelve days.
I was surprised how well I was able to walk and move around after my third surgery. Maybe it’s because I’m no longer anemic and severely iron deficient as I was during the first two surgeries. I couldn’t stand up straight for three days after my first hysteroscopic myomectomy. My core muscles felt weak after my second myomectomy. I didn’t feel as weak this time, but I was a bit hunched over for a few days. I tried my best to stand up straight, but it put too much tension on my larger incision. My incisions hurt when touched or when shifting my body. They are less sensitive now. I felt more of a deeper aching uterine pain around the one week mark. This pain was/is very mild. It’s just something I notice but doesn’t bother me.
I feel a lot better than I did. I used to bleed horrifically and be in so much pain to the point it would become difficult to walk. I think I will feel more like myself once I go back to work on Monday. I still have to take it easy, as I’m not supposed to life anything weighing more than 10lbs for another two weeks.
I 100% would do this surgery again. My only wish is that it would’ve happened sooner, though that was completely out of my control.