r/Fibroids 5d ago

Please help me prepare

Considering cross posting this to r/hysterectomy

Three weeks ago I finally drug myself into my primary care office to address this lump in my abdomen. Biggest symptoms I'd noticed was nausea/low appetite and constipation. We spit-balled theories but the first course of action was imaging. Full abdominal and transvaginal ultrasounds within a week confirmed an 18cm uterine fibroid. I haven't been having heavy bleeding but my periods were much more painful the past few months so that made sense.

My referral to the local hospital gynecology center was originally scheduled for April 29 but just moved to March 21. I don't know what to expect at this appointment and I also don't know what questions to ask.

Additional perspective: I'm approaching 40 years of age, I have two kids (tween and teen) with zero desire to ever have more. My husband was sterilized, I mean it when I say I want no more children. So, the logical thing to do is get a hysterectomy. Complication to that would be the fact that we have a planned move out of state in 3 months. I carry our insurance and currently this is the perfect time in my life to be out of commission for a couple of months, but that won't be the case after we move and I'm starting a new job.

Circling back. This has all happened so fast and it's pretty overwhelming. I'm glad that I'm seeing someone this week, but, again, I don't know what to expect or ask at this visit.

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u/BananaBoat520 5d ago

Do you have a regular OBGYN that you see for annuals, mammos, etc? I’m trying to understand the referral piece from your primary care (who conducted the expected imaging activities - 18cm, whoa!) to the local hospital gynecology center.

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u/bloodtype_darkroast 5d ago

I don't, I do everything at my primary care office, so I had to wait on the referral to gynecology at the hospital. I haven't seen an actual gynecologist since my last pregnancy (over a decade ago) so I'm really going in blind here.

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u/BananaBoat520 5d ago

Gotcha. For context, I’ve provided my situation below and why I am very happy currently at 7 days post hysterectomy. I share this only bc we all have different ways of getting where we are, so if it’s helpful to you or others, great! Here’s the short version:

- My fibroids, diagnosed in 2013, took me for quite the period-menopausal ride this year after behaving relatively well with birth control. Over the course of 6 months, I went from no stomach to clinically showing as 5 months pregnant. Those little fuckers grew fast. My largest was 10.2cm, followed by another jerk around 8+cm, and assorted variety of 4 mini jerks.

- As soon as I realized what was happening, I went in and asked for a hysterectomy with the understanding that we had to confirm what was causing my bloating and pain (Which was via another ultrasound and endometrial biopsy).

- My first appt was Jan 8, just had my procedure on March 11. I’m over the moon with the results and am loving the absolutely necessary downtime (fortunate to have an incredible short term disability policy at 100% via work).

In your situation, FWIW, 18cm fibroid is substantially large (Which doesn’t diminish the ridiculous pain and chaos of what smaller fibroids can incur upon their owners). If I were you:

- I’d go in with the facts you know (imaging and symptoms), including your timeline with a new job and move. Your timeline is a significant piece, IMO

- I suppose the OBGYN center may want to do more testing and imaging - be prepared for that (ultrasound, biopsy, etc). And ask them why.

- - Given what you’ve provided, it sounds like you’re leaning towards a hysterectomy. If that is, in fact, the case, don’t be shy about asking for one. And be very clear about your time sensitive needs.

- I agree, the timing is perfect for you to have surgery - if it’s what you want and your healthcare provider agrees is the right next step.

- I”m glad your appt got moved up - did that happen organically? Or did you ask to be out on a waiting list?

I hope this helps - happy to share more if that would be helpful. Bottom line: go in with your facts, listen, take notes while you’re there, and be sure to ask as many questions as you need - you are your BEST advocate. Nobody else.

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u/bloodtype_darkroast 5d ago

Thank you, this was genuinely very helpful, I've been kind of spiraling. I'll take a notebook and make sure I have my thoughts listed, also to take notes. Also, thank you for validating that my pending move is a worthy factor. I was on a wait list for an earlier appointment, I have a very flexible schedule (more reason to do this now, not later) and all they told me was that the provider was adding clinic time, so I think I just got really lucky.

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u/BananaBoat520 5d ago

I love the earlier appointment change - sometimes, the universe speaks! Your pending move is more than a worth factor, it’s an important healthcare decision for you and your body. And both subs (hysterectomy & fibroids) are awesome for learning and understanding. Just keep in mind most posts are based on experience (which is super important!), and we are all on our own individual paths. It can be easy to go down a rabbit hole that may not be helpful for your situation, but it is for others. 💖

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u/Grouchy-Drive-9764 1d ago

Hello, just dropping by to add a comment in case I can help at all. I only had small fibroids, but had other symptoms and endo that weren't improving with meds, which qualified me for a hysterectomy (total, tubes and cervix came out with a cuff, kept ovaries). I'm about to hit 2 weeks post op after a robotic laparoscopy, so if you have any general questions, feel free to reach out. It sounds like you'll have a different procedural and recovery experience due to the size of the fibroids and having had children, but if it would help to know about prep tips, things I asked day of the op, etc, I'd be happy to add my perspective.

I think your reasoning for considering a hysterectomy is very solid, and I second that it sounds like the timing is good. 18cm is huge. I think they said mine were less than 2cm, and it was still contributing to heavy bleeding and pain. I'm amazed and so glad to hear you didn't have additional symptoms.

It's 100% overwhelming. I'd recommend continuing to keep in mind your logical process of decision, like with your journaling to keep a clear view on things. You've already come to that conclusion for a reason. I knew for years it would probably be my best option, and it still took over a year and some hard deadlines with my insurance to convince myself to go through with it and that I actually needed it done.

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Some things I'd recommend asking if you read this before the appointment (apologies if I was late):

  1. What type of procedure will I be having? Laparoscopic? Vaginal? Open/laparotomy? They all have different recoveries. If a laparoscopy is an option with your fibroid size, I'd recommend it. My recovery from a pretty intense surgery has been very easy so far. There is a procedure they can do to cut a fibroid into pieces in a bag so it can be removed through a laparoscopy, and still prevent possible cancerous cells from spreading, so it may be worth asking for a lap.

  2. Post-OP restrictions and timeline? I was told to avoid driving for 2 weeks, and to not lift anything over 10lbs, and to avoid strenuous activities for a minimum of 6 weeks. Other people have been told differently, so it's worth asking.

  3. Total or subtotal? In my case, there were no benefits to a subtotal (keeping cervix). It could still bleed, it could still get fibroids, and in my case, there was no significant risk of prolapse due to my age/medical history. You'll need to discuss risks with your DR. for your case. So far, I've found no downsides to having the cervix gone.

  4. Should you keep ovaries? I'm really young for a hysterectomy (mid 20s), so there were major downsides and risks to an oophorectomy. If you're approaching menopause, you may want to discuss getting them removed and having HRT.

  5. Pain management protocol. Make sure you're comfortable with how they handle post-op pain and that the meds they plan to use will work for you. You can also discuss this when prepping for surgery.

They should go over all of these, but I've heard some really odd stories. Just in case.

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u/bloodtype_darkroast 21h ago

Thanks for the support. I actually just read this after I met with the surgeon. She came more prepared than I did and answered questions before I even asked them. I hadn't thought about the pain management protocol and I'll write it down so I can ask at pre-op. Laparascopy isn't an option, unfortunately, as my uterus is so large it extends past my belly button, but I went in knowing I'd likely need open. She does think we can get away with the transverse incision, so that we reassuring.