This post may contain affiliate links, which means I'll earn a small commission if you purchase something through these links. You won't pay any extra; instead, you'll be helping Aloha With Love to thrive. Thank you! Learn more.
--
It’s been a little over 7 months since my surgery to remove my 6-inch fibroid and I decided that now would be a good time to write a follow-up on my experience and healing process. In fact, writing this blog post now seems even more poignant since I discovered the fibroid one year ago. From discovery to surgery through recovery, I hope to share with you my experience so that other women with large fibroids know that they’re not alone.
Read more: My 6-Inch Uterine Fibroid Took Me By Surprise
As a warning, there will be a graphic image (bloody fibroid) in this post and I’ll go into detail about what was going on with my body. Also, for any women out there who want to ask me more questions about my experience, please feel free to email me at amy@alohawithlove.com. However, I encourage you to comment below your questions because our conversation will help other women who find this blog post in the future.
Pre-Surgery Steps
My surgery was scheduled for May 27, 2020 at Kapiolani Medical Center for Women and Children, which was a relief to hear. If you’re a woman in Hawaii having an operation to remove a tumor off of your uterus, knowing that your surgery will take place at Kapiolani Medical Center is comforting.
Unfortunately, COVID-19 made its appearance in Hawaii in March and I was told that no visitors would be allowed. In fact, I could only be dropped off. No one could come in with me even to get checked in. That was a little scary and of course my family was worried, but we understood the reasoning behind it.
My pre-operative exam with my OB-GYN at my local clinic was on May 20, one week before my surgery date. We mostly discussed what I already knew:
Size: The fibroid was estimated at 5 inches, but after the removal it was measured at 6 inches! That’s a big grapefruit!
Procedure: Abdominal myomectomy (like a c-section). I had researched the different types of fibroid removal surgeries and this method has the best results especially for a fibroid this size. There are less-invasive options, but they all had some drawbacks such as not doing a complete job and some women having to return and do an abdominal myomectomy anyway. The surgery would take anywhere from 45 minutes to 2 hours depending on what they found in there.
The chances of a hysterectomy: The doctor did explain to me that should complications arise such as me unexpectedly bleeding too much, they would have to remove my uterus completely in order to finish up the surgery as fast as possible. I agreed to this since at that point it’s your life vs. your uterus. Easy choice.
COVID-19 test: I had to take a COVID-19 test a few days before the surgery (the long q-tip up your nose!). It was a drive-up test and took less than 15 minutes including the wait time.
Pre-surgery preparations: Starting 2 days before the surgery, my doctor told me to start taking Ibuprofen and Tylenol as it helps desensitize everything in advance and makes the initial recovery less painful. I was also told to drink a full bottle of Gatorade in the car on my way to the hospital. Apparently all that extra sugar in your system really helps your body bounce back after a surgery.
Permission to watch: My doctor asked if residents could watch my surgery (which I agreed to – how else will they learn?) Most women with fibroids have had children and/or are older so they just opt for taking out the whole uterus. Since my fibroid was gigantic and we were planning for my uterus to remain as is, I was considered an anomaly and a good study session.
Questions I asked my doctor
Recovery time: On the internet, women who have had abdominal myomectomies or c-sections in general said they were up and walking at the 2-week mark. My doctor stated the usual: it depends on each person, some people recover faster/slower than others, etc. but they were quick to note that I was young, healthy, and didn’t have any foreseeable complications.
Why could I potentially lose my uterus? Sometimes unexpected bleeding or other complications can arise during a surgery. Unfortunately, things happen and the doctors have to deal with the situation in the moment. If my life was in immediate danger, it would be safer to remove everything, stop the bleeding, and close me back up asap. Do complications happen often? Not really – was what I think my doctor was trying to say. I get it, they can’t really give you a yes or no answer. Again, I was young, healthy, and had no potential problems that would affect my surgery.
Who was doing my surgery? My OB-GYN and not a doctor that I hadn’t met before.
Scarring: This was a question for my dermatologist after the surgery took place. I have keloids that require the occasional steroid shot to ease the itchiness, so I was worried about my abdominal myomectomy scar developing into a keloid, too. By coincidence I had a scheduled appointment with my dermatologist one week after the operation. They had a look and said it was healing well and I could start rubbing on silicone scar gel after a month of healing.
Check-in and operation at Kapiolani Medical Center
My abdominal myomectomy was scheduled to begin at 8:30 AM and I had to be at Kapiolani Medical Center by 6:30 AM. My last solids meal was the night before at 7 PM and I was instructed to drink a 16 oz. Gatorade on my way to the hospital.
In my hospital bag, I had packed my contacts (I wore my glasses), my ID, some cash, phone, charger, and toiletries. I didn’t expect to take a shower there, but I packed an extra set of clothes just in case. I wore a t-shirt, a large open sweater that was easy to take off, and a comfortable set of pajama pants that wouldn’t irritate the incision when I left the hospital.
Check-in during COVID-19 precautions: I was dropped off at the front desk and there were staff on the ground to direct me where to go and stand. Check-in involved sitting in an office with a hospital representative who asked me a bunch of questions, had me fill out forms, and let me know that the hospital regulations had just changed and that I was allowed one visitor. Yay!
Late May, the COVID numbers were really low and I was told that there was a chance the visiting regulations could become more lenient. They arranged for a parking pass in that office for my Dad so he could visit me as I stayed at the hospital.
Surgery preparation: From there I moved to a large room with several small cubicles blocked off by curtains. I was escorted to one of these smaller rooms that had a rolling bed and medical equipment.
I was told to stop drinking my Gatorade at this point – I had only drunk half. The nurse had me strip down completely and I wiped my whole body down with sanitized wet cloths. I cleaned the insides of my nose, did a pee test, and the nurse connected me to an IV, took blood samples, and put my medical bracelets on. Finally, I put on the hospital gown and thick, bright purple anti-slip socks. I ended up being thankful for these because after the operation my feet were very cold.
The most challenging part was the medicine. I had to take about 6 or 7 pills with only a few ounces of water. Then I got in bed and put on leg compressors that squeezed my calves every few seconds to help with blood flow since I’d be in bed for the next few days.
The last few minutes before the surgery: I lay in the bed while the nurses asked me several questions – mostly repeating the same ones over and over.
- My full name
- The type of surgery I was going to have
- My birthdate
They did this for every medical band and medicine that they gave me. Everything linked to me was scanned and confirmed with the barcode on my bracelet, which made me feel good that I wasn’t going to get mixed up with another patient.
Visiting doctors: My OB-GYN stopped by to check in on me, along with the resident who would be watching the surgery. The anesthesiologist also came to explain their procedures and my painkiller options.
When 8:30 AM rolled around, I was wheeled out towards the operating room. My glasses were taken off and everything became a blur. A passing nurse cheered me on and I remember the operating room was filled with several people all busy with their preparations. Oldies music played in the background and I remember telling the doctors that they had good taste in music, which gave them all a chuckle. They parked my bed next to the operating table and together shifted me over. I was told to grab the sides of the table and center myself in the middle. And then it was lights out.
Waking up
I felt like I woke up almost immediately, even though logically I knew it had been at least an hour. Considering I just came out of surgery, I feel I bounced back pretty quickly. I was not nauseous and felt clearheaded and aware of my surroundings. I just felt blind since I had no idea where my glasses were and couldn’t see anyone’s faces.
The first person who spoke to me was (I assume) my anesthesiologist, who constantly asked me about my pain level (1 – 10). My meds were adjusted each time until we got the pain down to a 1 – 2, which I appreciated.
My doctor came over to speak with me and gave me an update (even though she said I might not remember this conversation):
- I still had my uterus (yay!)
- It was close to 11 AM so it was a longer operation.
- The fibroid was a weird shape – weirder than expected
The cancerous fibroid scare: Most people might start to have a mini panic attack at this kind of news, but I believe the meds kept my mind floating – and I’m not a panicky kind of person. The doctor stated that while the fibroid was big (as expected), it also had a strange shape (that was unexpected). Basically, on the outside it looked like a mix between a benign fibroid and a cancerous fibroid. Not reassuring.
A specialist had been called in to look at it during the surgery, but that was inconclusive so the fibroid was sent to a pathologist. If that also turned out to be a dead end, my fibroid would then be sent to Stanford University where they would study and determine exactly what it was.
Luckily, the doctor called me just a few hours later because the pathologist concluded that it was not cancerous – <insert huge sigh of relief>! There were a few cells here and there that were abnormal, but for the most part, it was a regular fibroid – a benign tumor.
After a few more questions, testing my pain level, and getting updated, I was rolled to my recovery room where I could get acquainted with my nurses and rest.
Surgery recovery
Day 1 (Operation Day)
Surprisingly, I was really alert once I got over the initial drowsiness after the surgery. I flipped through the channels, texted friends, and practiced blowing in a plastic container I was given earlier (due to the anesthesia, you need to practice expanding your lungs since they become too relaxed during the surgery).
The nurses checked on me and my vitals 24/7 and I even called them in once because I could feel some discomfort with my catheter, which I assume was inserted during the surgery.
Just from this experience, I can tell you that you should feel zero need to pee when you have a catheter in. Let them know if you feel even the slightest discomfort or pressure on your bladder otherwise you’ll spend the next several hours feeling like you have to use the bathroom.
Since I was wide awake, at 5 PM my nurses had me hobble around my room a couple of times before they sat me down in a chair next to the bed. I stayed there about 2 hours watching a movie and sipping on a hot, clear broth before I returned to my bed. I continued to watch movies until midnight then I fell asleep.
Pain: On this first day there was very little pain because I was being given strong painkillers via my IV drip. The nurses adjusted my painkillers as necessary so that my pain level was always around a 1 or 2.
Day 2
I woke up at 6:30 AM and the nurses continued to check in on me for vitals and painkillers, but this time my painkillers were in pill form. They gave me a choice of taking opioids (narcotics) or Tylenol and Ibuprofen. Since my pain had been a dull 1 – 3 this whole time, I asked just for the Tylenol and Ibuprofen first.
A few hours later, I noticed a burning sensation (about a level 3 in pain) on my incision and the nurses checked it out and said it looked good. Most likely the burning sensation was because I was walking and moving around a lot more than the day before (I had gotten out of bed myself and walked around).
At 8 AM I had breakfast (more broth) in the chair and stayed there for a couple of hours before moving back to the bed. My OB-GYN visited me in person, checked the incision, and let me know that everything looked good. I was told that the stitches were internal and they would dissolve on their own.
Pain: From morning to lunch time, the pain was a bearable 3 – 4 with the accompanying burning sensation due to getting up and walking around. I didn’t feel the need to take the opioids and continued using Tylenol and Ibuprofen throughout the rest of my recovery.
Passing gas: My stomach internally began to really hurt in the afternoon. The gas was starting to build up and I felt like my stomach would pulse between bloating and flattening. Because my incision was on my belly, I didn’t have the strength to push gas out and just had to wait until I became strong enough to do so.
I asked my nurses about it and they said shifting side to side often helps. I did this for a couple of hours (I was miserable) and you can’t imagine the relief I felt when I finally let one go. From there it became easier to pass gas and I did this as much as possible to ease the pressure.
Seeing my incision for the first time: While removing the catheter in the bathroom, I was able to see the incision and stitches and like I predicted, it wasn’t aesthetically pleasing. I hate to sound like I’m whining, but I think it’s a legitimate concern for many women.
Looking from the side, my belly bulged due to swelling and it seemed to jut out unnaturally. Yes, I was worried that it would look like this forever. Yes, I felt not pretty, self-conscious, and petty. But as you’ll read later on, this healed really well and aside from a thin scar, I feel normal again.
Day 2 – Going home
I continued the rest of the day watching movies, eating lunch, taking pills, passing gas, and taking the occasional stroll around my room. At this point I suffered no nausea, could slowly get myself in and out of bed, and could eat solid foods.
A nurse helped me take my catheter out and I was told to try to pee by myself, which took me about an hour or so. I was then told that if I could pee one more time, I could go home if I wanted to. This is because sometimes your muscles relax so much that you can’t pee, which means they have to reinsert the catheter again and you have to stay another night. It took a lot of fluids, but I finally managed to pee once more and celebrated by texting my Dad. To which he replied “drink more! :)”
Dad came at 4:30 PM, went to the pharmacy to pick up my medicine, and then came to my room. I was still in bed and dinner came around 5:15 PM. The nurses still had to do some paperwork and get me ready so by the time they wheeled me down to the car where dad was waiting, it was a little after 6 PM.
In hindsight, it might have been better to stay in the hospital for one more day. The bed was adjustable and had railings within reach. The nurses were a button away and they knew what to expect and how to deal with it.
At home, my bed and living room sofa have no railings and no back support when I wanted to sit up. Getting up was significantly harder that first day and I know an extra day in the hospital would have allowed my core muscles to recover. It was also hard to ask my family for help. Don’t get me wrong, they were always at home and checked in on me often, but sometimes they were working outside in the yard, in a different room, or sleeping when I needed help.
But, I have to say, my wallet appreciated that I went home when I did!
Recovery at home
Day 3
Getting up, coughing, sneezing, big breaths, laughing, and moving was painful. I stayed on Tylenol and Ibuprofen and my pain level remained at about a 3. My Mom made me some soup and a grilled cheese sandwich, which was enough for me this first day at home.
I did have a hard time sleeping at night. I had taken naps throughout the day and was restless because of it. There was that slight burning sensation even when I stayed still so I made sure to wake up in the middle of the night to take my painkillers on time.
Passing gas was still difficult (I had to strain my core muscles to relieve the pressure) and I was thankful for the constipation medication I was given because #2 would wipe me out for the next hour. On a happy note, the pressure on my bladder was completely gone. I didn’t have to pee every 2 – 3 hours like before, so my hypothesis that my fibroid was putting pressure on my bladder was probably true.
Showering: I took my first shower on this day and my Mom offered to help. Mostly she helped me put my clothes back on because bending down to put on underwear and my pajama pants was next to impossible. Showering itself was no problem since standing in place was bearable.
Day 4
While movement was still painful, staying still was now tolerable. If I could get to a sitting position and sit still, the pain wasn’t an issue. Mentally, I felt like day 4 was a “getting-over-the-hump” day. The worse pain had come and gone, and it was time to begin to feel better.
More than anything, it was my butt and the back of my head that started to ache because I was lying down for so long. Getting up, standing, and walking definitely helped to combat this. Plus, these movements tired me out enough that I easily fell asleep at night without trouble.
I joined my family for dinner for the first time on day 4. I didn’t eat as much as I usually did and I actually ate at a slower pace. I think this was because I knew that eating fast meant risking coughing so I instinctively ate slower to avoid that potential pain.
Long-term Recovery
After 1 week: I continued to take Tylenol and Ibuprofen (about every 6 hours) as directed. Getting up was still a struggle, but it was less painful and I didn’t need anyone’s help like I did during the first 2 days of recovery at home. I still needed help putting on my underwear and pants (thanks, Mom), but other than that walking, sitting, taking big breaths, etc. I could perform without major struggle.
Using the bathroom and passing gas was getting easier as my stomach muscles became stronger. My appetite returned and I was able to walk a little straighter and stand in place for a longer period of time.
The incision’s burning sensation simmered down to an uncomfortable stretch when I moved. My entire lower belly was numb to the touch. I had about 50% sensation on either side of my belly and directly above the horizontal incision I had 0% sensation.
After 2 weeks: I began to stretch out my Tylenol and Ibuprofen intake to about every 8 hours. I could now perform all basic movements, including putting on my own clothes, but I moved gingerly as there was an uncomfortable stretch when I moved too fast or too much.
I paused my constipation medication towards the end of the two weeks, which was a mistake. Pushing (and passing gas) put too much pressure on the incision, so I went back on the medication.
I could take short walks outside of my house (5 to 10 minutes), which I did about 2 – 3 times a day. I was back to a normal eating schedule and I spent my down time awake, alert, and generally taking care of myself without my family’s help.
After 1 month: My pain was completely gone and I could walk and stand normally. However, I couldn’t run and sudden movements or a burst of laughter still brought some tenderness to my belly. I avoided all heavy lifting and was still uncomfortable with bending down to pick something up. It was difficult for me to straighten myself since that required lifting my upper body with my core.
Instead of pain, what was more of a concern for me was the itchiness on my belly. I would constantly scratch around my incision because I felt itchy. But scratching never brought relief because of the nerve damage I had naturally received due to the operation.
I knew scratching too much would irritate my skin, so I rubbed my belly a lot for some relief. But this went on for several months mainly due to the nerve damage and loss of sensation.
After 3 months: The swelling was completely gone and my belly flattened considerably. From the side you couldn’t even see the weird indentation of the incision which made me the most happy. The numbness due to the nerve damage was still present, but I noticed that I had a little bit more feeling right above the incision than before (maybe about 25%). This was great news since this same spot had zero sensation after the procedure.
The pain was completely gone even during activities like running and swimming. I did not do any heavy lifting as I felt twinges every so often, so I stayed away from weight lifting in order to give my body the best chance to fully recover.
The strange itchiness that wouldn’t go away was the biggest annoyance during this time. I could get no relief from scratching so I was constantly touching or laying my hand on my belly to feel the slightest comfort.
After 6 months: I would say by 6 months I had made a full recovery. I could do any kind of exercise without feeling anything near my incision and my sensation actually increased greatly to about 90%. I still feel that my skin is slightly desensitized and my belly still gets itchy once in a while, but nothing compared to the level of itchiness it was just a few months ago, which I am thankful for.
The things I needed and or recommend for the surgery and recovery
- Silicone scar gel: available over the counter at my local Long’s Drug Store. I dabbed on two 0.35 oz bottles worth of silicone every day one month after the surgery.
- Soft and easy to wear capri pajama pants with a high waist while the incision heals.
- Long open cardigan sweater that was very easy to put on or take off even when it hurt to move.
I know, this is a very long post, but I wanted to get it all out for anyone out there who is going through a similar situation. It was particularly frustrating for me because I couldn’t find much about big fibroids on the back of the uterus. In fact, most of my research came from looking into c-sections since abdominal myomectomies are basically the same procedure.
I encourage anyone with questions to post them in the comment section because if you’re thinking about it, I’m sure someone else is, too. But, if you don’t feel comfortable posting here, feel free to reach out to me by email at amy@alohawithlove.com. I’ll be happy to answer any other questions you may have about my experience.
Aloha with love,
Amy
Hi Amy, im 6months+ post surgery. Ive spent years suffering with fibroids, smaller than yours, around 4″ on scan (92*68*60mm Intramural), unsure in reality as was chopped up on removal but surgeon showed me an impressive photo!
Our covid surgeries couldn’t be more different. Luckily I’d researched but nothing prepared me for reality.
I was discharged with no medical help from hospital.
FIRSTLY, Please women, don’t be an idiot like me. Be selfish & make a fuss until someone listens & offeres you help.
Second, CONSTIPATION, no literature online, except to say, should only last couple days!!
Surgery Friday, saturday discharged home & had first bowel movement Monday & Tuesday. Another recovery milestone reached. But from wednesday & the next six months+ problems with digestion (food causes acid/trapped wind) & three months of agonising bowel movements (stomach feeling hard/throbbing pain above belly button/greyish poo/pain in lower stomach indicating I needed toilet/ throbbing in bottom).
CONSTIPATION is decribed as not having a bowel movement for three days.
But constipation can also be having a bowel movent daily but straining & coming out like pellets. Or having upto five bowel movements a day.
Recent example, awoke with headache, thought I was tired. Had two pellet bowel movements before midday meal & by afternoon, headache throbbing like a migraine & paracetamol won’t touch it. I realise it’s probably im constipated!
Being told to eat more fruit & vegetables, is not an instant cure & may aggravate constipation. For me prunes were a disaster, bloated pain for three days.
Remember to listen to advice but also your body.
I’ve had to have medication to help my bowel & found a salt based solution suited me
better than sugar.
I stupidly waited 6months to see anyone from my surgical team. I was told internally I looked great.
But my bowel & digestive complications were dismissed as coincidence & not a gyni issue!?
In UK very few public toilets open due to covid & only allowed one bubble/family to help in home, which for me was my pensioner dad. Only left home for food shopping, with no car, recovering & mauling shopping bags.
Having to leave home before Id had a bowel movement, had me in floods of tears, stressed in case I got caught short. My life revolved around going to the toilet & occasionally my bladder would go into overdrive.
Six months on, my belly fatter, im more unfit than Ive been in years.
I smile when Ive had a bowel movement, now my day can starts, even if I need another. I had to learn to relax, as life carries on & when your single in a pandemic, your recovery may not be textbook due to circumstances.
Thirdly: Pelvic Floor Muscles
A few years ago I had hospital physiotherapy, told to ‘zipp’ everything in & hold. To strengthen pelvic floor muscles & stop me wetting myself. Had little impact & I was left believing I was lazy. Ive since learned many women experienced the same & this method doesn’t work for everyone. The NHS, even then had a proven medical aided called Pelvic Toner (.co.uk) Basically it is inserted into the vagina & through squeezing the correct pelvic floor muscles, you should hear a click sound. I’ve personally had no sound yet but it did wobble & I was so happy.
In exercise classes I struggled with certain moves, such as lifting legs in the air, my body would spasm, Id feel humiliated. Now from reading & watching Australian physiotherapist Michelle Kenway, in lockdown, Ive learned several standard exercises, were actually putting unnecessary strain on my pelvic floor, causing a downward force, on top of the fibroid mass. Now I understand that post surgery, I will have to avoid certain exercises & this won’t be a sign of weakness but an aid to my recovery.
Yesterday I lifted a heavy box a few feet & today I had horrendous back & stomach pain. According to the internet I should be fighting fit but my body disagrees.
My surgical complications might be lessening but haven’t disappeared & I have to appreciate the pain free days or the rare normal bowel movement. To gain confidence Ive walked a few miles from home, without an accident, by planning were a toilet was accessible.
Even with everything that happened, I am so very greatful for the surgery, my insides now feel lighter. I was so ignorant, I had no idea what a uterine fibroid was, & too many women are like me.
Aloha Kirsty, I completely agree with you that constipation was a big part of the recovery. It wasn’t mentioned to me before my surgery, but my nurses explained all of my medicine (including the laxative) and what they would do for me. At the time I didn’t realize how much the laxative was helping until I stopped it about 2 weeks into my recovery. That was a mistake. I went right back on it and finished it all, which helped immensely with my bowel movements and gas. The surgery makes it impossible to “push” without pain for a few weeks so the laxative and non-fibrous foods are a must. Thank you for sharing your experience! This was exactly what I wanted to achieve with this blog post – by starting the discussion so women in situations similar to ours could find more information and real experiences. Aloha with love, Amy.
Hi Amy. Thanks for sharing your story. I have fibroids and noticed some similarities to your story. I also developed hip and back pain and acid reflux not long after these fibroids developed. I think you mentioned having those problems too in a previous post. Did those things get better for you after having the fibroid removed? Thank you!
Aloha Annette! I believe my hip, back pain and acid reflux have definitely decreased over time since I’ve had my fibroid removed. I still feel echoes of my hip pain mainly because I think I’ve been living with it so long and my body physically had to make room for the fibroid – it will take time, but I feel more comfortable and less pressure if that makes sense. Hope this helps! Aloha with love, Amy.
Hi Amy, thanks for sharing your story. May I check how do you cope with surgery anxiety while you opt for open surgery? Are there any advice pre, post surgery advice from your experience?
Aloha Apple, I just did as much research as possible so I could feel confident about my choice. I didn’t limit it to just fibroids either – I read a lot of surgery experiences (such as c-sections and ovarian cysts) to familiarize myself with what to expect. It really helped me to write my personal experience down only because it allowed me to analyze what was going on, almost as if I was experiencing it 3rd person. It’s important to have your support group, too. I was going through this right when COVID was ramping up in 2020, so although (initially) I wasn’t allowed any visitors at the hospital, just being able to share the experience with my immediate family (I didn’t tell my extended family until after) and 2 of my close friends was a mental relief for me. Post-surgery, I would say don’t push yourself physically or mentally. My body took about 6 months to heal, but honestly I felt like it took me a year to process and accept my new body. So just be aware of that and don’t be too hard on yourself!
Aloha with love,
Amy
Did you have a lot of abdominal pain and digestion issues before the surgery? That’s what I’m dealing with and wanted to know if getting this 5cm fibroid removed would actually help or not.
Aloha Sam,
I didn’t really have pain (which is why it got so big in the first place – aside from feeling like I had to pee all the time, I was in no real discomfort). I did have acid reflux quite often though and once I was diagnosed, I could feel the fibroid inhibiting my movement especially when getting out of bed or bending down to pick something up. Hope this helps!
Aloha with love,
Amy
I have a 16cm fibroid. Docs here are wanting me to just do a hysterectomy as anything else seems to difficult. I’m in Canada. Wish I had doctors who would help me save my uterus.