My Whirlwind Fibroid Experience

Megan Steffen
December 28, 2022

THE STORY

I’m hoping that by sharing my story around a fibroid diagnosis will help others in my situation. While I found a lot of medical information online, I found barely any stories from real humans who have gone through it. I share this to spread the word and make more people aware of fibroids, hopefully someday leading to more research done on these and better healthcare surrounding them. The story part is long, very long, so I appreciate your time, and at the end I share tips (even with some links to products I couldn’t have lived without) and insights. I’ll add to this as I think of new things! Feel free to share this story with anyone and everyone and please send me an email anytime if you’re experiencing this and need someone to talk to.

How It Started

In mid-June, 2022, after five months of trying to get pregnant, we decided to try IUI. After taking the stimulating hormone for a week and then a positive ovulation test, we contacted the fertility clinic to get in for IUI within twenty-four hours. Before they could do the IUI procedure, I had to get an ultrasound, so I headed over to the clinic by myself first to do that, then my husband would come down after that for him to do his part. First of all, let me get up on my soapbox for the first time in this piece…maybe give us a heads up that this is not, I repeat not, the ultrasound we all see on TV where they squirt some jelly on your belly and look around, but a transvaginal ultrasound. That is not something that should be a surprise. Ok, stepping off my soapbox… She started the ultrasound, and about five minutes goes by. I assumed by ten minutes I’d be done and we’d be doing IUI and maybe, just maybe, we’d be starting a family, even at my “advanced maternal age” (though I think “geriatric pregnancy” is morbidly funny.) 

Seventeen minutes in, the tech hasn’t said a word. She’s furiously typing, drawing lines across these blobs I can see up on the screen, the screen where happy women watch their babies move around. I knew something was wrong. Twenty minutes later, she stopped, said, “I need to go get the nurse” and right there I had confirmation: something *was* wrong. 

The nurse came in, brought me in to what I describe as the “bad news room,” a room with a couch and a chandelier, soothing music and pleasant wall art. I started to panic. My husband was still at home waiting for me to call, but there wasn’t going to be a call, I knew that much. The nurse came in, told me they had found four fibroids, one was very large, two were large and one was medium. They would be unable to do the IUI because of these. I asked what these were, though I had heard of them, I didn’t know much about them at all. She told me they were benign (they are almost never cancerous), but based on the size and quantity they could see, trying to conceive could be dangerous for me and the baby. More likely, pregnancy wouldn’t take. She said, “You’ll probably just need to get a hysterectomy, but you need to have a consult with a surgeon.” I stared at her. “Just a hysterectomy”?? “Consult with a surgeon”?? 

1. There is nothing “just” about getting a hysterectomy. I was only in that office to try to get pregnant, and now I’m being told, thirty minutes later, that I need the procedure that will literally prevent that from ever happening ever. 

2. How does one even “consult with a surgeon”?? 

I managed to ask her how I even consult a surgeon, and she called a large teaching hospital in Portland about five and a half hours north of us to get an appointment. I couldn’t unknow that these were in me, that they were preventing me from getting pregnant, that they were so huge that they probably causing other problems. The nurse went over what she knew from the ultrasound, that the extra large one was over 10cm, the large ones were about 7cm each and the medium one was 4cm. 

I went from driving to the Women’s Clinic filled with such hope and excitement and disbelief that we were going down this path to growing a family to immediately and abruptly changing course to figuring out what this diagnosis meant, no longer on a path to growing a family but evicting large masses from my belly.

Looking Back with New Insight

Looking back, I realized that I had chalked up a lot of my issues to “my period is always like that” or “being over 40” or “eating poorly” or “rarely exercising” or “not getting enough sleep” or whatever it was, for years. Years and years. My surgeon said, “your normal is not normal.” Talk about hitting home. She was right. It was not normal to feel so bloated every day or to have to pee constantly. It was not normal to feel uncomfortable and “heavy” all the time. It was not normal to have such painful, crazy periods. It was not normal to have lost 23 pounds before our wedding only to have my belly still stick way out. It was not normal to have such bad and such constant indigestion, gas and bowel movement problems that we named the constant noise coming out of my belly “Georgina.” Yes, I can eat better. Yes, I can exercise more. Yes, I’m in my mid-forties now. But these are not why I have had problems for so long. No one caught these fibroids and I didn’t know enough about them to have Dr. Googled it all to death. 

The Great Finding a Doctor Debacle

If I have learned anything from this entire experience, it would be to advocate for your health, nonstop, even when you want to cry and scream and meltdown. Which I did, many times. 

The nurse called me a couple of weeks after my diagnosis to let me know that I was number five hundred on the waiting list at the teaching hospital in Portland. Number 500. 500. I wasn’t getting in there any time soon. She had also told me that the three surgeons in my small region couldn’t see me until December. December!? It was June! I wasn’t going to accept that. So I started calling. I called every single fertility clinic and obgyn office on the list from insurance within 50 miles from our house. Then within 50 miles from every city between here and Portland. No one knew what I was talking about nor did they do any surgeries like that. My husband and I split up the list and kept at it, calling every medical office remotely related to women’s health near our previous area in Northern California. I called a place in Marin County where I grew up, they said they didn’t do anything like this, so I finally asked, “So if a woman came to your clinic and was diagnosed with fibroids like mine, who would you send them to?” Bingo. I got some names of surgeons. Bonus, they were in-network. The first surgeon I called in San Francisco could see me while I was in town for work at the end of June. I got my surgeon consult!

What Do I Do Now?

In talking with the San Francisco surgeon prior to being down there, she requested that I get a second ultrasound, a saline ultrasound that gives a better picture of what we’re dealing with. I did that. It was horrendous. Painful, long, scary. That ultrasound showed that I had “maybe six fibroids.” So it showed them two more than the regular transvaginal ultrasound did. Progress, painful progress. 

Let me note that sharing medical information over state lines and between fertility clinics and other medical offices is a total nightmare. Talk about meltdown central. This is a constant, terrible, defeating theme throughout my entire experience in evicting these little jerks.

At the end of June, I met with the surgeon. She. is. amazing. Her bedside manner is second to none. She treated me like a person, actually listened to me with genuine attentiveness, she made eye contact over her mask every single time she spoke to me during that consult. I have never experienced that level of medical care in my life. I lucked out so hard with her, it’s unreal. Advocate for yourself!

She reviewed the ultrasound (only the first one, the second was never sent: refer back to the nightmare that is medical care over state lines…and maybe just American healthcare in general) and told me that I have a few options, one of them being a hysterectomy but that is not my only option. We talked about what she was seeing, explained what they know about fibroids, listened to my story, asking, “Ok, let’s back up, how did you get here?” I told her everything that had happened up until that point, our goals as a couple to be parents, what that looks like now with this fibroid diagnosis. She listened intently, taking some notes, but mostly just letting me talk. She stopped me midway through, asked if I was ok, to stop, take some deep breaths and cry if I needed to. I let myself. I was so focused on finding a solution that I didn’t take time to grieve the path we had started on and accept the new one I was stumbling on. I shared with her that we had been trying for a baby for five months, a process that is more clinical than exciting, with ovulation tests every day, tracking apps, timing and is just truly defeating. We went into it knowing that my geriatric uterus may not be up for this, my geriatric eggs may not be plentiful enough or of high enough quality for this, but overall, based on all the testing we did over those five months, it wasn’t that much of a long shot. We were in good health and conceiving naturally was still an option. My mom had my youngest brother at 41, so that helped my chances as well. Now, with this diagnosis, that plan came to a very abrupt end.

We continued talking about what my goals were, what I wanted to happen (keep my uterus), and what treatment options were available based on what I wanted out of life plus the size, location and quantity of my newly-found enemies. My surgeon said, “I’m never going to cut you open without both a saline ultrasound and an MRI, so if you can schedule the MRI here at this hospital, it will make life a lot easier.” Done. I scheduled it for the end of July, booked some work while I was back in town, and got it done. I make that sound easy, but for someone who has massive white coat syndrome, faint at the sight of blood, and absolutely cannot handle needles, this was no small feat. The MRI technicians were incredible, placing a towel over the IV so I couldn’t see it, then one over my eyes to help me get through it. 

The results came in that afternoon and I Googled every single word on that report, trying to figure out what it was saying while I waited for the doctor to get back to me. I had “more than ten fibroids” with the largest at 11cm. My bladder was smashed down to pretty much nothing, explaining my need to pee all the time. The 6cm one was smashing my rectum, most likely the cause of my digestion problems. There were still a lot of words in there I didn’t understand, so now patience had to kick in, of which I had none. I was able to make an appointment with the surgeon later that week while I was still in town, and we went through the results. She explained the images, pointing out the fibroids, my poor bladder, and everything else in there. We started talking options: hysterectomy, open abdominal myomectomy, and possibly laparoscopy. I wasn’t a candidate for the less invasive procedures like uterine artery embolization, radiofrequency ablation or MRI ablation, they were too big and there were too many of them. My doctor, my husband and I went into detail on what we were going to do. I did not want to have a hysterectomy, we still wanted to try for kids, even though I’m geriatric now (sorry, “advanced maternal age.”) Laparoscopy wasn’t really an option because of the size and quantity. Open abdominal myomectomy it was then. We also moved the conversation away from fertility completely. I knew that insurance wouldn’t cover it if we were talking about it that way, and honestly, I wasn’t even really considering that piece of it. I needed these things out of me, I wanted a normal person bladder, I wanted my indigestion to go away. My surgeon was supportive and we made a plan.

Before I get into the surgery piece, let’s talk about what we thought we were dealing with that at point:

• “More than 10” fibroids

• All subserosal, projecting to the outside of the uterus, none in the uterine cavity (good news, pregnancy may still be feasible, geriatric-ness aside.)

• The largest one sat front and center in my belly, smashing my bladder almost to nothing

• The next two largest ones were in the back, behind my uterus

• The smaller ones were harder to place but were all over

Planning for Open Abdominal Myomectomy Surgery

Lab work is my arch nemesis. I don’t do needles, I don’t like seeing my blood outside of my body, I don’t want phlebotomists to steal my blood from me. I had so much blood work done - more than any other time in my life. I had to get blood typed (finally! O+!) and get all my levels checked so we had a baseline and to make sure I wasn’t anemic. August was filled with doctor stuff and somehow I made it through.

I was in constant contact with the surgeon’s office, planning Eviction Day. They could have seen me in August or early September, but my husband and I had already booked our COVID-rescheduled honeymoon for most of September. They knew I wasn’t local to San Francisco and worked with me on planning the surgery so it was easy and convenient for me. We were flying out of SFO for our honeymoon, so the surgeon’s office offered September 30th for Eviction Day, eight days after we returned from Europe. 

The Whirlwind Truly Begins

We returned from our honeymoon the afternoon of September 22, 2022. We attended a wedding in Monterey on September 24. I had an endometrial biopsy on September 26. (Side note on this: I thought the saline ultrasound was bad. This was a million times worse. I hope no one ever has to have one of these in their lives.) I had a photo shoot on September 27. I had to hunt down a COVID test, one that the hospital would accept, on September 28. Add that to the list of nightmares to deal with. On September 29, my husband and I went to San Francisco, checked into the hotel and started the eating and drinking plan they provided. 

We got bland food (more for my weak stomach than anything else) and I started in on my brilliant idea of a snack: Justin peanut butter packets with plain crackers, except that I didn’t buy plain crackers, I bought rosemary crackers. If you’re wondering, healthy peanut butter on rosemary crackers is not good. I had my allocation of apple juice and water. I tried to watch TV, tried to talk to my husband about anything, but just could not focus. I was terrified.

Eviction Day: September 30, 2022

We woke up (though I never really slept that night) around 3am, I drank my second allocation of apple juice, got all of my hospital bags sorted, removed my jewelry, and we headed down to the lobby. It was still pretty early but I was a nervous wreck, though that photo would say otherwise. We walked around a few blocks, while San Francisco was still eerily quiet. We arrived at the hospital check-in at 5:40am, the nurse promptly came to get me and I walked back, nervous sweats in full effect. I forgot my phone. 

They sat me on a bed, had me change into a weird purple gown, take another pregnancy test. I then went back to my bed where the nurse took my vitals, put on all the wrist bands, took my blood AGAIN (turns out the hospital itself needs to blood type you, they can’t trust another facility. Ugh.), confirmed that my endometrial biopsy came back clean, and put a hairnet on me. The nurse did her thing, I waited in nervous silence. Patience is a virtue. She handed me the papers, outlining the plan for surgery. It was incorrect - they had listed “possible Acessa treatment” but we had decided that we weren’t going to do Acessa (I didn’t want deflated tissue living in there forever, and it also hadn’t been around long enough for me to feel comfortable with it), so the paperwork had to be drawn up again and signed off by the doctor. Patience is a virtue. She put in the IV, I told her that queasy is my middle name, and she nicely covered it with a towel.

My husband was finally allowed in, and he tried to distract me as I sweat like crazy. The gown I had on was lined with plastic, allowing the surgeons to heat or cool me as needed during surgery. I offered up that cooling was really all I ever need: I run as hot as a summer day in Arizona without a plastic-lined gown, so maybe they could start the cooling now. No dice. Sweaty patience is a virtue. The nurse got me cold towels to help with all of my sweaty mess. 

After about an hour and a half of waiting, I was wheeled back. The hallway to the surgical room was freezing cold, so lovely. We parked the bed next to the doors and she escorted me into the room where I said, “it looks like Dexter in here” with no response. Maybe I didn’t say it out loud, but I’m pretty sure I did because I remember thinking how my voice echoed. As I walked to the operating table, the anesthesiologist loudly announced, “This is Megan! She’s going to have a myomectomy today! She’s going to do great!” He and the operating nurse cheered and clapped. I crawled up onto the table and laid down, he came over, looked down at my face, said we’re here for you, I’m going to keep you as comfortable as possible, you’re going to do great. I remember nothing after that.

Post-Surgery

I woke up in a different place, back to a similar bed as pre-op with draw curtains. The nurse said, “You’re back! I’m Stacy.” I vaguely remember replying, “My right side hurts so much. I feel sick.” Then proceeded to thrash around. She said, “I’m going to help you get your pain under control. You don’t seem like someone who swears much, but if you need to, you can say whatever you want, I won’t be offended.” I heard her call my husband, giving updates on when I may be able to get into a room. It took me almost three hours to get my pain under control (thank you, fentanyl), and get into my recovery room.

I barely remember being wheeled to the room. The nurses welcomed me, they got me hooked up to all the things, covered my IV again for me, and showed me how to use the TV. For some reason, there were only kids’ movies, one nurse said. I found out later that I was on the pediatric floor because there weren’t enough rooms. Too funny. In case you’re wondering, Shrek is categorized under Thrillers, Comedies and Dramas. 

Eviction Day was an absolute blur. I know my husband met me in the room soon after I got settled there. I was still so woozy and in and out of sleep from the anesthesia, but I do remember complaining a lot about my right side pain, feeling pretty nauseous and letting myself doze off. At 7pm, my husband had to leave, so it was just me and the nurses for a pretty long night. Every thirty minutes or so, someone came in, said “name and birthdate,” took my temperature, checked my blood oxygen and took my blood pressure. Around 2am, I was scratching my face off because it was so itchy. I started to freak out and called in the nurse. I asked if they were giving me Vicodin because my face is so itchy and I’m allergic to it. They were giving me oxycodone and tylenol. Turns out, yes, I have an intolerance for -codones, slightly allergic but what the doctors told me years ago isn’t quite true. I’m not allergic as in never-take-it-again, I’m allergic as in I can take -codones, but I also have to take it with a Benadryl. Fun times, folks. Fun times. By 6am, I was a very drugged up pro: I said my name and birthdate before they asked, I opened my mouth for the thermometer, put my finger up for the oxygen thing and stuck my arm out for the blood pressure cuff.

Let’s talk for a moment about the leg massagers. When I got into my room, they put these things on my calves that massaged my legs constantly. They were so awesome. In my drugged up state, I kept raving about them, asking the nurses if I could take them home. To which they replied, well, no but you can buy them on Amazon. It turns out that these leg massagers are polarizing like cilantro, either patients love them or hate them. I love them. Pro tip: they also sell them at CVS, and yes, we got some.

This photo is pretty classic me. Chapstick in hand, red face, sorta smiling even though I was miserable. The Chapstick is what gets me…must have one on me at all times!

Day Two: October 1, 2022

The morning of Day Two was hard. I didn’t really get to sleep much (“name and birthdate,” mouth open, arm out, finger up over and over), “up” at 5am for the day, and my husband couldn’t visit until 10am, which in pain medication years is like 6 days. My catheter was removed around 9am (note: it doesn’t hurt to have it removed.) I was so worried about the catheter but in all honesty, I preferred it. I didn’t have to get up to use the bathroom in the first 24 hours and that was more of a blessing than I could have ever known. 

As I mentioned before, I run hot like the sun. The AC in the room was down as low as it could be and the staff kept putting a blanket on me. Around noon or so, my parents arrived and my husband went out to find me a small fan. I was in so much pain that I could barely hold a conversation with my folks, so I asked the nurse for more pain medication. My IV was still in use at that point, so she gave me a dose of Dilaudid. Before she even finished administering the dose, my hearing dulled and I couldn’t hear my dad speaking, I was seeing double and I instantly got nauseous. I panicked, told the nurse that I didn’t want that drug and she said, it’s too late, it’s already in your bloodstream. Less than five minutes later, my surgeon came in. Of course she did. Luckily my parents were there to hear what I couldn’t, to ask her the questions my husband had written on my white board (where I also tracked burps and farts like a lady), and to focus on the things she was telling me because after that stupid Dilaudid, I had no focus. My husband still wasn’t back from the Small Fan Treasure Hunt. My surgeon went over how the surgery went (very well), there were no complications (yay), and then asked if I wanted to see a photo of the fibroids. I was still woozy and unfocused, so I asked my dad to take photos of the screen for me and to take notes. Up to this point, I was operating (ha pun intended) on the information that there were most likely 10 fibroids, ranging in size from 11cm to very small, like 2cm or so, but that there were eighteen fibroids and a cyst on my right fallopian tube. EIGHTEEN. 18. The largest at 12.4cm, then about 7cm, another at 6.5cm, then a couple 4cm ones, then down from there. 12.4cm is about the size of a baby’s head, so my surgeon called that one the Baby Head One, somewhere between a grapefruit and a mango.

Just to recap:

This is what we knew on July 27, 2022:

• “More than 10” fibroids

• All subserosal, projecting to the outside of the uterus, none in the uterine cavity (good news, pregnancy may still be feasible, geriatric-ness aside.)

• The largest one sat front and center in my belly, smashing my bladder almost to nothing

• The next two largest ones were in the back, behind my uterus

• The smaller ones were harder to place but were all over

What we were actually dealing with:

• 18 fibroids

• 2.2lbs of mass

• All subserosal, projecting to the outside of the uterus, none in the uterine cavity (good news, pregnancy may still be feasible, geriatric-ness aside.)

• The largest one sat front and center in my belly, smashing my bladder almost to nothing

• The next two largest ones were in the back, behind my uterus, smashing my rectum, colon and part of my intenstine

• Tons of smaller ones, mostly on the right side of my uterus

• A cyst on my fallopian tube

Right about then, my husband came in bearing my most prized possession - the small fan - and we caught him up. Even in my Dilaudid-induced fog, I was shocked that they had removed eighteen fibroids, weighing over two pounds. No wonder I felt terrible all the time. No wonder I felt bulky and bloated. I asked my surgeon about my severe right-side pain. She said that the majority of my fibroids were on that side so it may take a lot longer to heal and will cause a lot more pain. We talked a bit about how long I’d be in the hospital and what we’d cover in my post-op appointment a week later. There may have been more conversation that I missed…Dilaudid.

On Day Two, I did walk with a walker down the hallway, masked up for COVID protocols. It wasn’t much but I was proud. My husband and I continued to track farts, burps and bathroom visits and spent our time watching TV (him) and dozing off (me and him.)

As a side note, I was incredibly lucky to have the surgery when I did - three days prior to my surgery, this hospital lifted some of their COVID protocols, including allowing visitors for more than one hour a day, more than one visitor. I don’t know what I would have done if I had been alone-ish for 23 hours each day!

Hospital Daze (Days Two, Three, Four)

All of the documentation they gave me prior to surgery said I’d stay in the hospital overnight, then most likely I’d be released the next day. Day Two was a nauseous Dilaudid day, still could not get comfortable, wasn’t getting much sleep, and in a ton of pain. On Day Three, Sunday, October 2, I woke up nauseous again but had to pee so badly. I called for the nurse and she came in to help me get to the bathroom. I’m tall, 5’10”, and my nurse was petite at maybe 5’2”. I slowly tried to get out of bed, I tried to stand, wobbled, and the nurse put me right back onto the bed. She got a few other nurses and we tried to make it the ten steps to the bathroom but I just couldn’t. My mom told me that all of my modesty and embarrassment of bodily functions would disappear when I went through something like this, and as usual, mom was right. They had to get a bedside commode and four nurses helped me use it. Modesty and embarrassment fly out the window when you have to pee so badly but can’t walk and hurt so much that nothing else matters.

I felt extremely hungover from the Dilaudid - note that I never ever want that drug again - and started to dry heave. My worst nightmare: abdominal surgery + throwing up. (Other nightmares were coughing, sneezing, laughing, yelling.) My favorite nurse grabbed a bag and I sat on the edge of the bed for about two hours, sweating profusely and dry heaving. Also crying. Did I mention all the crying? I cry a lot when I vomit, more of a whiny poor-me bawling. It was finally 10am and my husband arrived, a look of concern and slight panic washed over his face when he saw me like that. Cold compresses and ice chips for hours. I was finally able to lie back down, slept until the next “name and birthdate”-arm-out-finger-up-mouth-open vitals check, and slept again until the next one. At some point, the on-call surgeon came in to check on me, I asked her if they were going to kick me out and send me home. She said, your pain is not under control and though you’re passing gas (one requirement) and can pee on your own (the other requirement), you are not leaving until you feel like you can. At that moment, I thought I’d just go ahead and make this pediatric hospital room my new home. 

On Day Four, Monday, October 3, 2022, the nausea had subsided a little bit. The physical therapist came in to show me tricks I wish I had known on Day One. We took another walk, this time without the walker, all the way around the nurses’ station! She taught me how to get in and out of bed more easily (this info on Day One would have been invaluable), she got me a grabber (a must-have) and shared tips on walking and going up and down a few stairs.

The on-call surgeon had to clear me to leave - by then I was finally sort of ready - and ordered my prescription for Percocet. Around 2pm, a nurse wheeled me down to the parking garage area for patient release. With the help of the nurse and my husband, I got out of the wheelchair and oh-so-slowly walked to the car. I couldn’t figure out how to get into the car. My husband helped, we wrangled me gently into the car, and we headed north about twenty minutes to an Embassy Suites for a week of recovery. We knew there was no possible way for me to sit in the car for six hours back to our house, so we booked an ADA room at a hotel about two miles from my parents’ house and close to other friends and family.

The drive to the hotel was horrible. I’m not going to sugarcoat it at all. As slow as my husband was driving and as careful as he was, roads are bumpy and every turn moved around my poor, beat up uterus. I almost threw up multiple times in that twenty-minute drive, and I cried hysterically the whole way, pretty much from the moment we turned onto Van Ness Avenue, across the Golden Gate Bridge and all the way to the hotel. When we got to the hotel, my husband checked us in and got me a wheelchair. He wheeled me up to our room on the fifth floor, a nice big room with a living room and couch with chaise, a tiny kitchenette and a bedroom with two queens. Even though it wasn’t home with all its comforts, this room was better, mostly because after that short drive, there was no possible way I’d make it home. So we made room 508 at the Embassy Suites home for a week.

Recovery Is No Joke

We spent seven nights at the hotel. I walked the halls, working up to a walk around the hotel outside and going down for the classic Embassy Suites breakfast buffet. Friends and family visited, my very young nieces carefully sitting with me so I could get the best recovery medicine: kid time. The handlebars by the toilet were a godsend, along with the ADA shower where my husband could help me and I could sit on the bench. I ate my plain chicken and rice, sometimes asking my mom to add plain spinach to get more nutrients. My parents were awesome, I’m so lucky to have had such an amazing support system. I sure needed it.

Three times I got severely nauseous and threw up. There seemed to be no rhyme or reason to it, but when it came on, it was something fierce. Vomiting was the one thing I was most afraid of and again, not to sugarcoat anything, it sucked. It was excruciating and compounding. 

On Day Ten, our shower ceiling filled with water and made a huge paint bubble. We had to check out a day early so we decided to test a car ride to Sacramento, about an hour away. The ride was nowhere near as bad as the ride from San Francisco to the hotel, but it was beyond not fun. It was painful and there were tears. I did load up on my Percocet so I was better off and then slept most of the time we were with my husband’s family. 

On Day Eleven, we made the trip north. Armed with my memory foam pillows, seat belt pillows and an extra dose of Percocet to try to make it, we hit the road. The first two hours were terrible. By hour four, I finally fell asleep (aka knocked out by the pain meds) and we made it home. Prior to leaving for our honeymoon, I had made up one of the guest rooms for myself - the one with the bathroom the closest, the most firm bed, the coziest. 

My husband has had to do all of the heavy lifting, literally and figuratively, since Eviction Day. As an independent person with a healthy indignant self-sufficient mode activated regularly, it has been hard. It has been hard to let him help me. It has been hard to let anyone help me. I decided before surgery that I had to let that go. I had to allow my loved ones to help me, to support me, and I needed every bit of it. Recovery is no joke. Every single thing was hard. I found out very quickly what I could and couldn’t do, from opening the freezer to brushing my hair to walking around the block. 

My right side pain was (and still is) the worst. Around Week Six, I contacted my doctor because the right side pain was so severe and I was worried there was something wrong (still am.) Because my surgeon is in California and I am in Oregon, everything is the worst. She cannot order me anything, she can only make recommendations and then I have to contact my local doctor to get care. You can see where this is headed…hellish nightmare. My doctor couldn’t see me for 2 weeks, so she referred me to someone else. I got in to see him two days after the referral. Two days lost. Still extremely nauseous with some dry heaving, dizzy, sweaty, crying and doubled over in pain, we finally go to see this other doctor. I told him my surgeon said I need a CT scan and bloodwork, so he put in an order for both, marking the CT as stat so I could be seen immediately.

Ah the new medical care saga begins. The imaging center they sent me to never got back to me. We called and called and called, never getting through. I finally emailed and they said they couldn’t do an abdominal CT because they’re under construction. Another twenty-four hours lost. I had to contact this doctor again, and ask them to push through an order again, and of course they didn’t mark it as stat. After an infuriating day of trying to get this figured out, all while in tons of pain, we decided to just go to Urgent Care. After about an hour of waiting (patience is a virtue), I was seen and promptly told, yes you need a CT scan, if you get it here, insurance will most likely not cover it. At the going rate of $5000, we left. We left because our healthcare system is so broken it’s STILL somehow better to just go to the ER when they created Urgent Care to avoid this happening. 

I decided that if by the next day at noon I still couldn’t get in for a CT scan, we’d go to the ER. Note to self: just go to the ER next time. At 10am, the doctor’s office called and said they corrected the order, remarked it as stat, and sent me to a different facility. Yet again, I was poked and prodded, it was a CT with contrast, and then bloodwork. I was as normal as I should be for that phase of post-op, but it still doesn’t explain what’s wrong. My surgeon has been great, but she can only do so much across state lines. Something else to consider if you need surgery.

Here I sit at Week Twelve + four days and it’s still not easy. I’m better of course, but this right side pain is still terrible. It still catches my breath. It still wakes me up all night long. My surgeon cannot figure out why I would still have this, except that almost all of the fibroid removal was on this side. I’m looking into things like a weird reaction to Interceed, nerve damage, adhesions. I don’t know what’s wrong, and although it’s better overall, I feel like at Week Twelve, I should be better. Slowly, maybe I’ll get there. In the meantime, I may look into getting a second opinion. 

Week Twelve and Beyond

I wrote this for me. I wanted to document what I went through, as someone who has never had any surgery except wisdom teeth removal, as someone who is terrified of the doctor and everything medical, as someone with such a queasy reaction to needles. I survived. I am in more pain than I ever was before surgery. My fibroids didn’t cause me pain. My periods we weird, but I thought they were my normal. My belly issues weren’t painful, not pleasant but not painful. Even though I’m in more pain now, I don’t regret the surgery. There’s no way to unknow that those things took up most of my belly space. They had to go.

We would still like to try for a kiddo. Even with my “advanced maternal age,” we’d still like to try. This pain will probably delay that for another three months, which brings me even closer to being 45. The chances are less than slim. We know that. We’re also looking into other options like adoption. If we could afford surrogacy, we’d do that - it turns out that even at our “advanced ages” our goods are still good. Unfortunately, surrogacy is in the hundreds of thousands and that’s just not attainable for the average Joe. I was a foster parent back in California and we’ll look into this path as well. There are a lot of options to becoming parents, not all are straightforward, but at least there are options. Families can look like anything with love.

My myomectomy was unexpected, it was scary, it was serious. It took me down a path I couldn’t have fathomed. It happened quickly because I advocated for myself. I navigated this horrible system we have and made it happen. It took a lot of effort, frustration, tears and grit, but it’s done and I’m now allowing myself to continue to heal.

The What Ifs

I’m a what ifs person. I have a hard time not planning out every scenario in my head, good and bad, and trying to figure out what will happen if… My surgeon was not a what ifs person. From the first time I met her at the end of June, she wouldn’t let me play that game. We took this diagnosis on the methodical route, only making decisions when we had enough information to do so. Forcing me into this thinking was good for this experience, but at heart, I’m still a what ifs person.

What if my husband and I had reconnected in 2015 instead of 2018? Then we would have gotten married when we wanted to, not delayed by a pandemic, and we could have tried for kids then, finding out the diagnosis at age 37 instead of 44. I could have had the myomectomy then, recovered and still tried for a kid before age 40. What if.

What if we had decided to get married at the courthouse, a COVID elopement of sorts, instead of waiting a year and a half? Then we could have started this process in 2020, buying me two years of better fertility. What if.

What if I had never reconnected with him and was still single? Then I may never have found these stupid fibroids and gotten them evicted. What if.

What if I chose the wrong treatment? I didn’t. What if.

What if I died during surgery? I didn’t. What if.

What if they come back within a year? They may. There is no way to know how fast they grow and when they’ll be back. I’m still far enough from menopause that they will most likely come back before menopause hits. What if I end up with another set of huge fibroids in the next couple of years? I could. What if.

My what ifs personality isn’t going to change. I’m going to continue to spin, playing this game of what ifs forever. A lot of my what ifs are things I cannot change, like my age when we were supposed to get married in 2020; my career choices and life choices that may have inadvertently delayed meeting someone, getting hitched and trying for a family. I made the best decisions for me in that moment in time, for all the moments. Getting this diagnosis in 2020 may have been worst case scenario - what ifs - I could have known and not had any way to have them removed because of COVID. They were not harming me in a way that is anywhere near emergency-levels, so I would have had to live with them anyway for much longer than I did on my real timeline. I’ll work to change my what ifs thinking, and if you’re like me, it will only be better that way for this specific experience. There are no what ifs if you take the information you know and make a decision based on that and that alone.

Insights and Tips

I put together a stream-of-consciousness list of tips and insights. I did a lot - I mean A LOT - of research after my diagnosis and while there’s some medical articles out there, I had a very hard time finding anecdotal stories from women who have been through it. 

Insight: I wish I had found The White Dress Project, Fibroid Foundation and Fibroid Fighters when I was diagnosed. I think I was so focused on learning about what these were and how to get rid of them, I looked past any organizations designed to help with this very thing. These are the communities I needed and now that I’ve found them, I continue to need.

Insight: Be your own health advocate. You’ll need you through this process. Ask for what you want. Demand what you want. Ask for what you need. Find a medical care team that fits your style and one you can trust.

Insight: I joined fibroid Facebook groups. I lasted two weeks. I took what I needed from them, but overall they just scared me. I wasn’t ready to be a part of those communities until I knew what I was going to do.

Insight: Listen to your body. Take actual notes. If something is wrong, contact your doctor. You know your body best.

Insight: 6-8 week recovery is low. If you’re not within that window, don’t freak out. It’s ok. We’re all different. I’m at Week Twelve and I’m still nowhere near normal. Better but not normal.

Insight: Think through what you want for your life. Do you want biological children someday? Do you want to be sure fibroids never come back? Is this about fertility only or quality of life? There are a lot of things to consider and when you sort of know where you stand, it’ll help guide the conversation with your medical team.

Insight: Really ask yourself: are the fibroids causing other issues? They probably are. Especially if they’re large and if there’s a lot of them like I had. Talk to your care team about fertility options but also regular things like bladder issues and bowel movements. What your normal is with fibroids is probably not normal and you’ve just accepted that’s the way you are. You don’t have to be.

Insight: You may get asked or hear this in passing: “Why don’t you just get a hysterectomy?” This is NOT your only option! Look into every single option you have that aligns with your next steps and things you want out of life (biological kid or not, quality of life, recovery times, work expectations/requirements, every single thing.) 

Really Specific Insight: Washing your hair can be really hard. Don’t lean back, step back under the water and just let the water do its thing. 

Really Specific Insight: Brushing your teeth can also be tough. I couldn’t lean over and spit, so I had to just accept that things would be a bit messy for a while, with toothpaste and water everywhere.

Really Specific Insight: You may get your period while you’re at the hospital. Mine came because I hadn’t taken the pill in 4 days. It was crazy heavy, so having the thick hospital pads were helpful.

Tip: Ask for physical therapy on Day 2 - tips and tricks to getting in & out of bed, walking, how to navigate steps, ask for a grabber. That grabber was invaluable.

Tip: Belly binder: I said somewhere in here that your belly binder is your new BFF. Really, truly, this thing holds it all together, literally. I could not imagine trying to recover one moment in the first 6-8 weeks without that thing. I woke up with mine on after surgery, so if for some reason they don’t automatically put one on you (I assume they would though), then talk to your doctor beforehand and order one. This thing helped for every car ride, every shopping trip, every night’s sleep, every sneeze, every cough, every laugh, every minute keeping my belly still. CRUCIAL piece of stretchy fabric.

Tip: Get a slim cami or tank to wear under the binder and then wear a shirt over. The velcro and elastic can rub and cause some skin irritation. Even with that on I still had some skin problems. I actually sacrificed a pair of my postpartum undies and cut the top belly band off and that worked great. I run hot, remember? Wearing two shirts is not my jam.

Tip: Get a small step (a folding step, a wood block, anything) for getting in and out of the car

Tip: Get three memory foam pillows for the car - one to sit on, one on each side

Tip: Order a c-section/hysterectomy pillow for the seatbelt. Mine attaches to the seatbelt and has a pocket for an ice pack

Tip: Before leaving the hospital, ask for a ton of those ice packs. They’re amazing. Take anything they give you. They can’t use a lot of it once you’ve touched it or if they’ve opened a pack, so take it - bed pads, ice packs, paper gowns, hysterectomy underwear

Tip: Speaking of underwear, order your own hysterectomy underwear. It’s ingenious. It’s comfortable. You may never want to wear regular underwear again…

Tip: But when you do wear regular underwear again, wear postpartum underwear. It is seriously the best invention on the planet. Twelve weeks later and I still need to wear them. They are so high that they don’t rub on my incision.

Tip: Bring a water tumbler with bent straw to the hospital.

Tip: Thick pad to put between your underwear and your incision (the hospital ones are great)

Tip: See if your hospital cafeteria will make what you want. My hospital had an awesome menu with fancy things and all I wanted was plain chicken and plain white rice with salt. They were happy to make it.

Tip: If you have to stay in a hotel after you’re released from the hospital (recommended for anyone living more than 30 minutes from the hospital), get an ADA room. The toilet handlebars are basically a requirement.

Tip: If your significant other is with you to take care of you, sleep in separate beds if you have the space. It took me seven weeks to sleep in the same bed with him. I couldn’t handle the movements from myself, let alone another person.

Tip: Rest. Seriously. Rest. You need way more rest than you think you do. Tired at 2pm? Take a nap. Allow yourself time to heal and don’t beat yourself up about it.

Tip: Drive only when you think you can. If you cannot slam your foot onto the ground, don’t drive. You’ll get there.

Myomectomy Toolkit

Hospital Bag

During your stay

• Chapstick

• Device for watching shows

• Headphones

• Notepad

• Pen

• Water tumbler with bent straw (I put a funny Schitt’s Creek sticker on mine)

• Small fan if you run hot

• Thick pad to put between your underwear and your incision (the hospital ones are great)

• Your own pads for any bleeding, spotting, leaking

• Belly binder - the hospital will probably have already put one on you. This is your new BFF.

Leaving the hospital

• Hysterectomy underwear (these are glorious)

• Slip on shoes

• Long, loose nightgown

• Hysterectomy pillow for the seatbelt

I didn’t use most of what I brought. I was in their gowns the whole time, I only wore the mesh undies after Day Two and they provided those, they gave me socks. I slept more than I thought I would so I didn’t watch much, and when I did I was so drugged up I couldn’t really focus.

Hotel Stay Bag (Week One)

• Long nightgowns (I lived in this one)

• Robe (I went with a light one because I run hot)

• Grippy socks (take as many as you can from the hospital)

• Slippers with grippy bottoms

• Slip on shoes

• Loose, high-rise joggers/sweatpants/shorts (these have been great)

• Loose t-shirt

• Postpartum underwear in a size larger than you normally wear (I’m still wearing these)

• Dress with built-in bra (loved this one)

• Gas relief pills

• Peppermint tea

• Stool softener

• Tylenol

• Advil

• Notepad

• Pen

• Splurge: leg massagers (like one of these)

Recovery at Home (Week Two+)

• Prep your sleeping space (where you’ll also spend a lot of awake time!) 

• Clean sheets

• Waterproof mattress cover

• Pillows galore for your pillow fort

• Close to a bathroom

• Keep a grabber nearby

• TV/iPad/laptop - something to watch shows, read books

• Pillows

• Wedge pillows

• Memory foam for under knees and at sides of knees

• Body pillow (bonus for a funny cover, mine is Super Mario Bros because that’s all we could find)

• It helped me to sit a bit more upright (still does). Have enough pillows for your sides and your head

• The hysterectomy seatbelt pillow is still in the car

• Extras

• Grabber

• Tylenol and Advil - a lot of them

• Your prescription(s)

• Stool softener

• Gas pills (surprisingly crucial - gas pain was worse than almost any pain)

• Foot rest for sitting in chairs 

• Recliner (get that weight off your middle)

• Shirt/tank for under the binder, between you and your shirt (that thing rubs!)

• Memory foam pillows and hysterectomy seatbelt pillow

• Long bath scrubber for your body

• Walking - increase it every day

• Use your newfound physical therapy knowledge to help you get in and out of bed. Use your arms and elbows and heels and flop down and push up. Let your abdomen rest.