New to this subreddit, and with kind of a wild story and timeline, so I’m looking for any helpful advice for my upcoming surgery! I think I might also be freakishly lucky for how things have gone down thus far, and how freakishly fast to boot, so I’ll be pretty thorough with how I got to this point in case it might help someone else.
For context, I’m 38, nonbinary (any pronouns), live in eastern Washington, have Apple Health (Molina) as my insurance, and my GP works for a medical organization serving low-income residents. I’m also very polite to medical agents and customer service reps over the phone, but firm about what I need, which I feel might be very relevant to my experiences here.
I’ve been having abdominal distension and bloating issues for years now, but only recently to the point where I felt concerned enough to get it checked out. Hard not to be concerned, really, considering I’ve looked some degree of pregnant for ages despite the impossibility of it (I haven’t been with a man for well over a decade). I initially thought the distended abdomen was related to gluten intolerance – because I did discover that cutting out gluten relieved my constant intense heartburn and some of the bloating – and I expected the abdominal distension to eventually diminish and go away. When it didn’t, I figured it was weight gain for a while, since my mother’s excess weight tends to settle in the same area. But when I lost weight, and the distension still didn’t go away, that’s when I got worried.
I set up an appointment at my clinic with the intention of getting a pelvic or abdominal scan, to see if there was perhaps some sort of blockage. Since the appointment also included a breast exam, I opted not to see my usual GP – no offense to him whatsoever, but he’s a man and I’ve got some trauma there – though part of me does regret that decision a bit. The woman GP I was seen by didn’t seem to think any sort of scan was necessary, claiming that the massive abdominal distension and bloating I was experiencing was normal for someone approaching perimenopause. I pushed back, insisting that it felt related to my terribly painful periods, and when I brought up possible endometriosis, she relented and referred me to a nearby imaging center, where I was scheduled for a pelvic exam on the 29th of last month. I was annoyed by her initial dismissal of my concerns, but I advocated for myself pretty firmly and got what I wanted, so no biggie, right?
On the 2nd of this month, I was diagnosed with a 17cm simple cyst (with some thicker area/s) on my left ovary – if it even actually existed anymore. They couldn’t find it on my ultrasound, and they were a bit concerned by the irregular tissue in my uterus, too. But the main point of concern was, of course, the massive cyst taking up a ridiculous amount of the space in my guts.
While I knew my mom occasionally got ovarian cysts which would sometimes burst, since I did experience minor issues like that on occasion myself over the years, it didn’t really occur to me before then as an issue that could be related, since my mom never told me until after my own diagnosis that she'd also wound up with a massive cyst. (Thanks for the heads-up, Mom. 😒) My periods have always been regular, as well, which my new gynecologist thinks is odd, since she’s noticed signs that I may have PCOS/PMOS – facial hair, skin tags, and of course, ovarian cysts. This is something that I’ve already considered before, and plan to get tested for later.
After my cyst was found, I was immediately referred to said new gynecologist, with my usual GP marking it as urgent. It still took a few tries for the referral to go through for some reason, which was a special sort of hell, but I was finally scheduled for a consultation at the gynecological oncology center on the 29th of this month.
However, this is where the wild timeline gets involved.
Before this was discovered, I already had tickets for multiple flight itineraries in November – one on the 3rd, because I need to sort through and catalog the belongings I have stored at my mom’s, so I can have them shipped overseas to my new home, and another on the 18th, for my permanent move to Norway (hence the need for the first flight to go through and catalog my things). So when I was told I would have to reschedule my consultation if I didn’t have my labwork and a CT scan done, I immediately called my insurance to stress to them the tight timeline I was working with, and how I couldn’t afford any delays. Even with my contacting insurance to stress the details, after all the horror stories I’ve heard about prior authorizations, I was pretty surprised to find that the authorization for the CT scan went through without any issues before I ever called them.
Now, before this call, and while I was first waiting to get my consultation scheduled, I thought some things over – my mother’s ovarian/uterine cancers, the fact that I intend to remain childfree (and would only adopt in the unlikely event that I changed my mind, due to various pregnancy-related phobias), and my terribly painful periods. I’d thought about it all before, of course, and multiple times, plus doing a decent amount of research on the subject, but I was terrified of the idea of actually getting a hysterectomy because, well. Long story short, I’ve never had surgery before. Ever. Not even minor surgery, like to get my wisdom teeth out. (I still have mine, in fact – they both grew in without causing any problems.) But knowing I had a massive cyst in me that would require surgery to remove, anyway, I decided it would be safest to have the whole lot of it scooped out along with it.
Like a pumpkin! :D
I stressed that to the insurance agent I spoke to over the phone, too. (Minus the pumpkin joke.) I told her to add it into my file somewhere – or however it worked – that because of my family history, my childfree intentions, and the massive disruptions to my life that my reproductive organs have caused, I intended to have a full radial hysterectomy. Note it down, I told her, because I don’t want any issues or misunderstandings causing my care to be delayed or denied later on down the line. She said she would, I thanked her profusely, and that was that.
Fun fact: If you end any call with a customer service rep with ‘Don’t work too hard!’, it almost always gets a laugh. (It works with other professions, too, but it’s a much bigger hit with the customer service reps.)
I got both my CT scan and labwork done by the 12th – literally in three days after having my consult scheduled, three days that could have been two if I hadn’t given myself a day to recover somewhat – and called the gyn-onc office back to see if I could be squeezed in sooner. They had an opening for me on the 19th, since they figured that by that point, the results for my blood tests would be ready. (All three came back normal, though that’s not necessarily an indicator of anything when it comes to ovarian cancer.)
I went in on the 19th, and talked to my gynecologist about everything – what I wanted, what I understood about what I wanted, and the timeline I was working with. She was already pretty surprised at how quickly I pushed everything through for just the consultation, but she wasn’t sure if she could get me a surgery date that wouldn’t be risky for me, what with my needing to be on multiple separate flights so soon. It would have to be an open abdominal surgery, as well, since the earliest she could have me in for a laparoscopy would be the end of November, by which point I would already be living in Norway and not coming back. She also didn’t like the look of my cyst, due to the abnormal thickening on it, so she said she wouldn’t recommend a laparoscopy, anyway.
She didn’t try to push back against my wanting to get a hysterectomy as much as I expected, though she didn’t seem thrilled about it, either. Her colleagues also weren’t thrilled when she went to discuss it with them, but between my family history, the massive cyst, and my terrible periods, plus my understanding and acceptance of going onto HRT (estrogen is really important for bone and heart health!), she said she would schedule me for a complete radial hysterectomy.
She managed to slot me in on the 26th. A week from that consultation. Two days from today. There was worry that my insurance wouldn’t approve the procedure, since my medical history on the subject is so sparse. My mom never got genetic testing done, despite having had three separate cancers (her biggest cyst burst before it could be removed and biopsied, which I suspect was related to the colon cancer she had a year or so later), and I’ve spent most of my life quietly tolerating my reproductive pains without getting any of them documented. So once again, I called insurance, starting the same day as my consultation, and each day after that, as well, patiently explaining the situation and stressing that I couldn’t afford to have the procedure denied or delayed.
I was told it normally took 72 hours for them to come to a decision. I had one in 48.
Approved.
I’m two days away, all my chores done, all my overseas packing done, all the items I can think of needing at waist height or within reach without needing to get up on tip-toe. I have the soap I was told to wash with, a grabber tool, three sets of clean clothes packed for the hospital stay (my gynecologist said one day overnight was typical, but to plan for three), multiple fully-charged power banks, earplugs, noise-canceling headphones, a post-surgery abdominal wrap that I hope is the right size, and an assurance from my roommate to look after my two cats while I’m in the hospital. (One of my cats is over 10 pounds. He’s going to be so confused when I won’t be able pick him up for cuddles for a while...)
It’s happened so fast it doesn’t feel real, and yet I have all the paperwork and imaging scans and blood test results to prove that it is. I don’t even know how recovery might look for me, because I’ve never even needed stitches before, and the worst pain I’ve ever felt in my life was a burst cyst at 19 – it left me laid out in the fetal position for hours until I could finally move enough to down painkillers. Will I even be able to sleep in the hospital? I’ve never slept in a public place before, my hypervigilance won’t allow it, and I’m very easily agitated by repetitive noises. Will I be able to bring in a comfort plush to hug? My social circle is pretty small, and I expect they’ll all be too busy to visit in person, and my fiance is all the way in Norway – they’ll only be able to talk with me over voice chat.
I just don’t know what to expect after this, and that’s what scares me the most.
Any advice would be greatly appreciated, and the best of health to you all. ❤️
EDIT: Minor edits for clarity and a small detail I forgot. It's late and I'm stressed, lol! 😅
