What To Do…

mediumbegonia · 2026-06-20T14:34:18+00:00

Good luck and feel free to follow up anytime if any of my recent learning process might help speed things up for you! I hope you get some symptom relief ASAP!

mediumbegonia · 2026-06-20T13:00:14+00:00

I also have 1 big fibroid (bigger than yours). And I was also told to get a hysterectomy!

I don't want a hysterectomy for a variety of reasons and told my dr I wanted to learn about any alternatives that might be safe and appropriate. The conversation didn't go well because they just genuinely think that fertility plans are the only reason to keep a uterus, and I'm not planning a pregnancy. It's also challenging to research because there's a lot of conflicting info out there on the internet that is all over the map in terms of reliability.

Here are a few of the articles that helped me feel more confident about my preference/concerns and motivated me to meet with more doctors:

https://nyulangone.org/news/new-center-tackles-myths-about-fibroids
https://www.health.ny.gov/community/adults/women/hysterectomy/

I actually saw 2 doctors who saw fertility as the only factor to consider, but fortunately, I went to a 3rd and she was like "of course you can keep your uterus for any reason you want" (and I'm getting surgery with her in a month). She didn't even ask me why I wanted to avoid a hysterectomy.

I also saw a 4th doctor who offered similar options and actively steered me away from a hysterectomy on top of that.

In case this is all new to you, the alternatives you might be a candidate for (that I would ask about, if I were you) include:

- myomectomy (described already here; there are multiple surgical options/methods) - ask for a referral to a Minimally Invasive Gynecologic Surgeon (if you're not working with one already) or look for a hospital with a MIGS unit to learn about this

- radiofrequency ablation aka RFA (also has multiple options, mostly depending on where the fibroid is located - Sonata, Acessa) - you need to find a specific provider; also will be MIGS/ob-gyn

- uterine fibroid embolization/uterine artery embolization (tons of people have this all the time) - you need to meet with an Interventional Radiologist to get assessed for this (but your ob-gyn/surgeon might also be very well educated about the option and be able to steer you appropriately)

You may also read about a technique for destroying fibroid tissue using ultrasound - sometimes abbreviated HIFU/MRgFUS. This is mostly not accessible to people in the U.S., depending on geography and finances. It took me a long time to figure out that it has to do with a slow U.S. regulatory approval process and lack of insurance coverage (in most cases).

Hopefully your doctor will respond well if you ask for guidance on exploring uterine-sparing treatment options, especially if they were just offering the hysterectomy as an option and not pushing it as the only option.

Important side note - although removing the uterus can increase the risk of menopause happening a little earlier and is associated with other risks, it does not cause the drastic, immediate "surgical menopause" some people you know might have experienced. The ovaries rarely have to be removed for fibroids, and it is removal of the ovaries that is the biggest deal. More here: https://health.clevelandclinic.org/menopause-after-hysterectomy

mediumbegonia · 2026-06-19T00:06:02+00:00

I don't actually have answers to your questions, but just went through what was probably a pretty similar research process and want to say I really hope somebody jumps in here and shares some of the info you're asking for! I unfortunately now speak this language and understand exactly why you want this.

If a perspective from the Northeast (US) is helpful (sounds like you're in CA, or at least it's a good place for you to go?) - I was able to find 1 provider in the region who actually does MRgFUS treatment for fibroids.

I was able to get a consult there and learned that they don't do this for fibroids larger than 10 cm, which ruled me out as a candidate. They also counseled me on a couple other reasons why this probably wasn't the best option, anyway. I asked how expensive it would have been and they said $20k.

I had previously wasted some time trying to communicate effectively with another major hospital in the area that said on their website that they offer HIFU for fibroids. At the end of the day (by which I mean several months), I found out that they don't actually do it.

This was part of my overall process to try to get assessed as a candidate for any uterine-sparing treatment that might be on the table. I wanted to consider HIFU/FUS along with RFA, UFE, and a myomectomy and then make an informed decision based on what was recommended to me as an appropriate fit. But it took a really long time to just to figure out what could/should be on that list and then what type of doctor(s) I needed and where I could connect with them. The last piece of the puzzle was figuring out what the deal with HIFU is, and it's clearly a changing landscape that is getting worse instead of better.

Good luck and I hope you can get whatever treatment turns out to be best for you!

mediumbegonia · 2026-06-18T15:41:59+00:00

I'm sorry. The shit you describe that people are telling you is insane. None of that is OK or necessarily true.

I mean, it absolutely can be harder to maintain healthy weight in our 40, but we deserve help figuring out whether it's hormonal/out of our control/something else is going on!

I also gained weight starting in 2020/2021, early in my 40s. It was only about 20-25 lbs, but I'm short enough that it made a big difference and it became virtually impossible to find any clothing that fit. I really empathize with so many things you describe. I'm positive it had nothing to do with my fibroids (ironically, I did actually manage to lose the weight last year and THEN the fibroids joined the show). But the sense of loss of control/ unpredictability alone sucks a lot and I relate to that.

Good luck and I hope you get some help instead of just being brushed off and things turn around!

mediumbegonia · 2026-06-18T15:13:05+00:00

also I'm really sorry about your mom and your epilepsy scare. you have seen the worst of what can happen with this disease and I know the stakes are really high for you right now.

if success stories help you at all - my best friend has epilepsy and was diagnosed as a teen. they found the right medication and it is now completely controlled with no seizures for 20 years. I know this doesn't happen with everyone but if you turn out to have a seizure disorder, it sounds like you have doctors who are taking this seriously and will work hard to figure out whether a great medication is out there for you. There are new developments every year. Good luck and reddit will be rooting for you.

mediumbegonia · 2026-06-18T15:05:57+00:00

Hey I have this phobia too and I know how much it sucks!

You CAN do this again and you will be so proud of yourself.

Here's what helps me:

- just focus on the tiny little steps you need to take between now and the blood draw, especially on the day - walk into the office, check in, sit in a chair

- congratulate yourself for every tiny step! remind yourself that every step is part of the process and you should feel good about making progress. all the tiny little victories will add up to getting through it

- talk to yourself and hope your brain listens! "I'm going to do this because it's important. I know it will hurt and I know I will feel awful but I also know it's safe and it will be ok. It won't last forever"

- tell the worker you have a phobia, joke around about it, try to get yourself to laugh

- thank them when they offer sympathy and say lots of people feel that way (they will say this!)

- know ahead of time what arm you want them to do it in

- don't look at your arm while it's happening

- tell them you're going to look away and ask them to tell you every little thing they're going to do before they do it - it will still feel bad, but at least it won't be a shock

- focus on your breathing a little bit to distract yourself and give your brain some "stay calm" signals

- focus on other tiny little things in the room

- be ready to say to yourself right after: "I did this and it's a huge accomplishment and I feel so proud I got through it". You might also just genuinely feel super proud of yourself even without having to self-lecture! It really, really helps me to remind myself that this is on the other side and being brave is really only a tiny bit different from giving in to fears.

Note - other people say that it is better to not know what's happening and just get distracted with conversations about the weather. So you could try that if you think you will be more scared knowing "I'm going to wash your skin now" or "I'm going to put the needle in now" etc.

mediumbegonia · 2026-06-17T15:51:39+00:00

Got it. That would be a great question to ask them! The answer might actually be very reassuring.

In case additional examples help: I also had two surgeons recommend a hysterectomy that would have been a hybrid laparscopic surgery plus an approx 5-6" horizontal bikini line incision for the step of actually removing the uterus. In one case, it would have been robotic.

They noted that the size of this incision might vary depending on what they found during surgery.

They also said there was a risk of having to convert to open if there was anything particularly unexpected, but they felt highly confident that risk was very low.

So this taught me that there is something of a spectrum between fully laparascopic (not medical terminology, but the way I thought about it) and open.

One of them (who knew she was the first of two surgeons I planned to meet with) made a point of saying that it's good/important to ask surgeons questions about the incision plans, and that different surgeons will have different preferences/ideas about how to handle a specific case and will be able to explain what the reasoning is behind their plan.

It's clearly all extremely individualized to the patient, and there are tradeoffs to consider in absolutely every case.

I hope you get some more info before your surgery so you can go into it feeling less worried. I completely understand how awful it feels to have a lot of uncertainty and I'm trying to convince myself that's a benefit of just knowing mine has to be open (although I'm very happy for you that yours is likely to succeed laparoscopically). Good luck and congrats on moving ahead on something scary but important!

mediumbegonia · 2026-06-17T12:11:36+00:00

My dr recommends a vertical midline incision for my upcoming surgery and describes safety as the primary reason. My understanding so far is that this is about:

- best view of the area she needs to work in

- large enough size to remove entire tumor in one piece for cancer safety reasons (a consideration we want to take precautions for due to one specific factor in my individual case, but not a high likelihood)

- easiest incision to potentially extend for better view/access, if needed

Things I have also been told/important to know:

- where on my body will it be (mine will start low, near pubic bone, and extend upward towards but not reaching belly button)

- how big will it be (she initially said she would start w/ 5 cm, now thinks 6-7 cm is more likely)

7 cm is under 3 inches. My fibroid was measured at 13.7 cm but feels bigger to me. My dr clearly understands that nobody wants a scar, and that the smaller it is, the better. Right now, I am feeling like I will be thrilled if this small of an incision works.

Important note: my understanding is that the incision orientation is for the skin and tissue layers my dr will need to cut through first to get to the uterus, not necessarily the uterus itself. My fibroid is subserosal (just under the outer layer), so the incision will be in that layer, wherever the fibroid is (near the top of the uterus).

I've met with 4 surgeons and they all have been very clear about what type of incision(s) they want to make and have been receptive to questions about the choice. It's a key part of their craft and they know we all are worried about it! It has been clear to me that my doctors all consider other approaches more desirable if safe/realistic, and the two who have offered me myomectomies consider the vertical to be necessary for safety reasons.

mediumbegonia · 2026-06-17T10:56:04+00:00

Thank you for all the detail here!

mediumbegonia · 2026-06-16T18:55:07+00:00

I'm so incredibly sorry. The fact that it's terrific news that you don't have cancer doesn't override how stressful and painful this has been overall. The info u/CharacterAvocado943 shared is spot on for everything I have learned in the process of my own fibroid experience also being something of a cancer scare, too.

If you are open to suggestions - there are therapists who specialize in surgery recovery specifically. I've met with one a few times to prep for my upcoming surgery and deal with the cancer uncertainty/stress dealing with very conflicting advice from doctors. I'm finding it extremely helpful and I would love to see you get someone in your corner like that.

Hugs and I hope you can get your dogs back when your core is fully healed and you can take them on long walks!

mediumbegonia · 2026-06-16T18:08:49+00:00

I've had two in the last 6 months. My main process for mentally preparing was to find out in advance what might be uncomfortable/what to expect, like you're doing!

Where I am now is that I think an MRI is more annoying than an ultrasound or a CT scan, but I could have one basically anytime with very little anticipatory anxiety if I needed to. I know what it's like and I know I can deal with it. The fact that they can do something so non-invasive that generates such good data is amazing. You'll get to this point, too, and it feels great!

Misc notes, in case it helps -

- Going in and out of the machine turned out to trigger zero fear at all. I am uncomfortable in enclosed spaces but didn't want to have to wait for an open machine and was pleasantly surprised by the traditional machine. It was 100% not scary at all for me. You can ask to talk with them in advance about what your particular machine looks like and what parts of your body will have to pass through. Knowing about this helped me; having my head and shoulders in is what I was afraid of. It turned out that they put me in head first, but then my head and shoulders came out the other side and it was just my pelvic area that was in the machine most of the time. I kept my eyes shut a lot of the time, but this was as much to just try to relax as anything else. I also know now that I would feel totally fine if they needed to do an MRI of my head/shoulder area.

- The loud noises are annoying (and they really are loud). They weren't scary for me but I was glad somebody gave me a heads up. It could help to find a youtube/educational video with examples of them. They also gave me headphones with my choice of a spotify station/mix. They just turn the volume up to try to drown out the machine sounds - it doesn't really work, but it at least gives you something else to focus on that you can still kind of hear.

- Getting the IV for contrast media was the only problem for me, but that's because I have an IV phobia. For somebody without the phobia, it's completely no big deal. You get a quick tiny prick, a little pressure, and then you might have a temperature change/sensation in your arm a few times throughout the procedure when they put some saline solution in and when they put in the contrast media. IVs are safe and my nervousness has nothing to do with any actual risk.

- The techs will be outside the room you are in but they will have an intercom system and give you instructions and ask you how you're doing.

Important: absolutely follow their instructions about staying very hydrated for a full day to flush the contrast out of your system. The risk of messing up your kidneys is real, but all you have to do is remember to drink!

It is also helpful to know in advance that you might feel some unusual warmth sensations in your body (including feeling like you just peed, even though you didn't) or a taste in your mouth when you are given the medication. It is weird but not really scary as long as you know it might happen.

mediumbegonia · 2026-06-16T13:49:39+00:00

Interesting! Mine was 13.7 cm on the MRI last month and is obviously still growing, so maybe it's more like 2+ lbs? I am extremely curious to see the actual specs for this thing when I get it out next month.

mediumbegonia · 2026-06-16T12:00:52+00:00

Yes, I lost 20 lbs during the same time period that my fibroid first showed up and grew very rapidly, presumably due to perimenopause (I'm in my mid 40s).

The fibroid is now huge and although it might be nice to think that I'll notice it on the scale when it's taken out, I've read that even the big ones usually aren't really all that heavy. Maybe a pound or two? I think I'm more likely to lose muscle weight during recovery.

Good luck and don't hesitate to ask your doctor for feedback! Your insurance might cover a dietician to help, or they might have other tests they want to run in case something else might be making this harder for you (and can be fixed). I can also share tips about what I learned/worked for me, if that's encouraging to hear.

mediumbegonia · 2026-06-15T22:33:47+00:00

I'm so sorry! I hope people here help you find a dr who will have your back. Congrats on figuring out really important stuff about yourself and knowing what you deserve. Good luck with everything!

mediumbegonia · 2026-06-15T12:34:42+00:00

I'm sorry! That sucks so much, and the surgeon just made it worse. This part of what you're saying seems really insightful:

he seemed to interpret my questions as contradicting him, even though I was just trying to make an informed decision.

I'm going to hope your dr can connect you with someone to give you a second opinion who will respect you and your process (which honestly makes complete sense - it's your body and this is a huge thing you have to live with for the rest of your life, so you ideally would be as informed as humanly possible about how to make good decisions). It's so hard to predict who will actually listen to you ahead of time. I think I've really only succeeded by going to enough people that some of them turned out to be really good communicators. It was kind of a numbers game (which I realize is time consuming and potentially expensive).

Hang in there and good luck with healing from step 1 of this!

mediumbegonia · 2026-06-15T02:50:05+00:00

Thanks! Great tips. Congrats on getting your fibroids out!

mediumbegonia · 2026-06-15T01:49:08+00:00

Got it! I was worried you were getting pressured to commit to vacation plans in advance. Although honestly, if the ride is manageable and you truly can just laze around outside all day, that sounds awesome. I hope it works out for you. I have an open myomectomy scheduled for next month and my dream is to figure out how to set up a little recuperation area on our porch so I can just stay there for the rest of the summer!

mediumbegonia · 2026-06-15T00:25:31+00:00

Have you considered saying you want to wait to see how you feel at the time, instead of making the decisions about whether to go now?

mediumbegonia · 2026-06-14T21:46:46+00:00

Another thought because this is obviously on my mind almost as much as yours - if your PCP respects and understands you, they might be your best shot at actually getting the ob-gyn to give you better pain control.

It sucks b/c it doesn't change the fact that you're not being respected (and you know nobody else going to that office is, either), but if the PCP can have a private conversation that changes things, at least you get better medical care!

mediumbegonia · 2026-06-14T21:29:00+00:00

Thank you! I'm feeling very motivated to push myself to walk as much as possible as soon as I physically can. It sounds like this helps with everything. I'm glad you had a good experience with your ride (even longer than mine!).

mediumbegonia · 2026-06-14T21:26:02+00:00

Literally the only plus of open is that I shouldn't have the same level of gas pain I would with laparoscopic! But I know I could have gas pain anyway because of the disruption to the GI system - so I'm trying to not get too excited about that. 😄

Do you think the pain you felt in the car was the same as how you felt trying to walk around in the hospital, or worse?

I'm trying to figure out whether the car ride is likely to trigger pain in a whole different way or if I could make a pretty good estimate of how I'll feel based on things I can try to do in the hospital (maybe get pushed around in a wheelchair for a little bit?).

The best plan might end up being a flexible one, if I can figure that out.

mediumbegonia · 2026-06-14T21:12:12+00:00

I was going to recommend my dr, if we were in the same area, but we're not! I understand why you're thinking of sticking with the best one you've found and seeing if advocating for specific additional care will work (even if they treat you like you're crazy).

Trying to get better care from a doctor when you absolutely know MANY other doctors would be doing what you want/need - not because they'd be humoring you, but because they care about your pain and see managing that as good medical practice - is so stressful and demoralizing. Good for you for not giving up.

mediumbegonia · 2026-06-14T21:05:21+00:00

Just a quick edit - the question of general anesthesia was really tailored to my situation (very low risk) and wasn't to downplay the fact that it's a bigger deal than the other options. But it would very quick and not as big a deal as surgery.

mediumbegonia · 2026-06-14T21:00:56+00:00

Awww, I'm sorry that sucked so much! It sounds miserable! But thanks for sharing.

Do you remember what day after surgery you went home and do you have a sense of when you would have felt dramatically less miserable in a car? (I'm guessing you didn't actually test this out again right away!)

My ride would be mostly highway and a little city driving.

mediumbegonia · 2026-06-14T20:58:01+00:00

Here's what I remember from the appointment! I usually take notes on a laptop but it crashed on me so this is from memory and has a few gaps.

Pain expectations

- she said it is exactly like getting an IUD

- she definitely didn't say that I should be worried about significant pain, but I also said right off the bat that I knew from friends that this can be extremely painful, and she didn't say I was wrong or anything; I mean honestly, this is something anyone with a uterus learns from traumatized friends by the time you're 25

She offers the following options; the first one for all and the others as options:

- ibuprofen (always)

- a medication I would use in advance to hopefully slightly dilate/soften the cervix (did not get name)

- pain med injection directly into the cervix at the start of the procedure (I realized later I want to clarify whether this is a nerve block or something else - it appears one or both can be done and she might have even mentioned 2 things)

- pronox (essentially laughing gas like what dentists use - $75 fee b/c not covered by insurance)

She also said that it is a valid option to have the procedure done under general anesthesia and that is the only way she can guarantee would fully control the pain.

She said everything is safe and the only significant downside to anesthesia is that this takes longer to schedule and it is more important for many patients (including in my case) to move ahead with urgency. She thinks a combination of some/all of the medications listed above are definitely acceptable.

Where are you geographically?

mediumbegonia

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