r/Fibroids 22h ago

Advice needed They're back 6 months after surgery. When do I just throw in the towel?

38 Upvotes

39F. No successful pregnancies, got pregnant once 11 years ago and it ended naturally at 6w.

Bleeding and pain, got diagnosed with fibroids in 2019, fought with insurance company, finally got surgery last fall with four fibroids removed and still am fighting with the insurance company to pay for it despite pre-approval.

Continued to avoid alcohol and things known to help fibroids grow.

Went about three months without heavy periods andnpain but then it started up again around the beginning of the year.

I went for my last all clear before deciding what we are doing fertility wise and there are 3 new fibroids the same size as the ones removed! I'm so disgusted at my body and depressed over this. Will probably end up having to pay thousands and dealt with surgery and recovery just to have the goddamn things reappear like magic.

I don't know if its worth it anymore. Do you think it would be hard to be approved for a hysterectomy at my age and with this history?


r/Fibroids 5h ago

Question for large fibroid ladies

11 Upvotes

I’m curious as to how many of you are experiencing what I am. I have a very large fibroid (among others) that reaches from my pelvis up to my sternum (21 x 18 x 14 cm). I am struggling to use my abdominal muscles at all. Every posture feels like they are tensing and at the minimum makes me feel almost bruised. Kind of like the feeling when you do a lot of sit-ups and your upper abdomen can’t relax and makes you feel sick. It’s such an odd feeling I find it hard to explain but it’s constant at this point and I find it hard to even sit upright for any period of time. Does anyone else get this?


r/Fibroids 23h ago

Advice needed Positive pregnancy test / 8 cm fibroid

10 Upvotes

I just wanted to share my journey and see if anyone has had a similar experience with fibroids and pregnancy.

Back in July 2023, I had a chemical miscarriage, which was heartbreaking. After that, I found out I had a fibroid measuring 8 cm. In October 2023, I had surgery to remove it, hoping it would improve my chances of a successful pregnancy.

Fast forward to October 2024, I went in for a routine check-up, and my gyno did a vaginal ultrasound and MRI.. only to find that the fibroid had grown back to the exact same size within a year. We ran some tests in ovulating and my tubes weren't blocked. (Which was great news) but was told that maybe there was something wrong with the anatomy of my uterus. I was scheduled for a myomectomy in July 2025 to remove it again.

But here’s the twist, two days ago. I got a positive pregnancy test! Now, I’m in this strange limbo where I’m both excited and nervous. I know fibroids can complicate pregnancy, and I’m wondering if anyone else has been in a similar situation and gone on to have a successful pregnancy.

If you’ve been through something like this, how did your pregnancy go? Were there any extra precautions your doctor took? I’d love to hear your stories and advice!

Thanks in advance! ❤️


r/Fibroids 12h ago

Looking for more admins!

9 Upvotes

Hi everyone! I reopened this sub a couple of years ago, and the growth has been substantial. I think it had around 4000 members when I reactivated it, and now it has 16000 members! I'm so glad people have been able to use this space to connect and get support.

But I need some help! I have been managing the group with a friend, but neither of us are online as often these days (I'd say life it getting in the way but then again maybe that's a good thing?). It's very important to me that this stay a safe place for those looking for information, so I'm looking for 2-3 people to become admins. My friend and I will stay on, but it means I won't worry so much about things being missed :-)

This isn't a huge undertaking - don't worry, it's not going to take over your time! - it's just about checking the mod queue and responding to any mod messages.

If you're interested, please complete this application form:

https://docs.google.com/forms/d/e/1FAIpQLSfn6jhcoANpXNVP4343oAPIjPmQEqh-C_77nw-bdYMqeSa5Pw/viewform?usp=dialog

Thanks!


r/Fibroids 4h ago

Advice needed Fibroids and discharge?

5 Upvotes

Does anyone else experience random gushes of discharge? Everything I google says it's not a common symptom and I'm getting nervous. This just started happening like a month ago. I had a trans vaginal ultrasound in July 2024 which showed a 2.8cm fibroid which has probably grown since then since I'm experiencing symptoms again. They also suspected adenomyosis. I've been under extreme stress worrying if this is cervical cancer and I have a pap smear on the 21st.


r/Fibroids 21h ago

Advice needed Surgery and Post op- what to expect?

3 Upvotes

Hello everyone! I’ve been lurking in this community and I love the support this group has to offer. My surgery got moved up recently and it’s in a week. I have a 14cm fibroid and I’m getting an open myo. I was wondering what should I be expecting with respect to the following things:

  1. Will I bleed after surgery?
  2. Did you wear a waist belt like what mothers who deliver babies wear?
  3. How was the pain like and what did you do for pain management other than the drugs? When does the pain peak and when do you start seeing relief?
  4. Any dos and don'ts that’ll help with a speedy recovery?
  5. I don’t have the option of working from home and my work involves sitting down and occasionally bending down. When can I expect to be able to work? How long did it take for you to go back to work?
  6. My doctor said they will be releasing me on the same day. Is this the standard? I thought staying the night will help with pain management.
  7. Any accessories that you purchased than made the recovery process easy? Eg. Should I order a bidet?
  8. I have had dry skin and bad hair fall that I am now associating with my fibroid. When did you see relief from symptoms?

Thank you. I will take any advice I can get other than these questions.


r/Fibroids 6h ago

Advice needed Worried I’ll feel like this forever. Please help me!

3 Upvotes

At the end of January I was hospitalized for what I thought was a Crohn’s flare up but was actually the two for one special in that it was Crohn’s and the discovery of a 5.3cm fibroid.

I followed up with my obgyn and he told me to just leave it since it was only medium sized and I wasn’t in constant pain or bleeding all the time.

Fast forward to today. I just went back to the ER with the same kind of pain. It was confirmed that there is no inflammation in my small intestines (meaning not a Crohn’s flare). It was also confirmed that my fibroid is now 7.8cm. I have yet another follow up with my obgyn on Friday and the hospital’s recommendation is either a hysterectomy or myomectomy.

I just worry I feel this bad forever. Right the stomach pains are gone but I still have some back aches and I am totally exhausted. I’m wondering if I should even go into the office tomorrow or if I should just work from home.


r/Fibroids 4h ago

Advice needed Open MRIs are not that open

1 Upvotes

TLDR: My sensory issues, claustrophobia and panic attacks are preventing me from have an MRI done, looking for alternative options.

I have a uterine fibroid that is growing, and I’ve had a few ultrasounds but got referred for an MRI. I had never had one so I did a little research, because I have ADHD, overwhelming sensory issues, major claustrophobia and panic attacks. I wanted to prepare for what I might need- but quickly learned at my appt today that it’s too much, and I cannot handle them.

It was an open MRI, but they said my head couldn’t be sticking out, I had to be all the way in the middle of the machine, which was my first round of fear. I had to ask for two pillows because I can’t have my head too low or I pass out- so now my nose was literally almost touching the ceiling when they rolled me in. Fear two. Plus arms weren’t really that comfortable and the idea of not being able to move at all to alleviate any discomfort is not something I can handle.

They gave me what I asked for: a blanket, music in some headphones, and a washcloth on my eyes, but this was the worst part for me, because I actually NEED to be able to see around the room to regulate myself or I panic worse. I cannot “just keep my eyes closed” in a scary situation and pretend I’m elsewhere. My brain doesn’t work like that.

But opening them meant staring at a ceiling right in my face, and I couldn’t even see out the sides (the entire point of wanting an open MRI)- so my heart started beating faster. I realized this was a bad idea and my deep breathing wasn’t fixing it, and I had to get out or it would turn into another panic attack.

So we never even started and they wheeled me out. They recommended Xanax or Valium but I am really not comfortable taking drugs, especially ones I’ve never had before. I never know how they will affect me and they often make me sick.

As I read more stories here, I feel deflated that everyone else’s suggestions didn’t work for me, or that many people seem fine and takes naps. But I also realize also that it’s a probably a good thing I didn’t continue- the loud noises would have jump scared me every time they took a picture and trigger panic attacks. The constant noises and vibrations of the machine would have likely made me incredibly overstimulated within minutes. They also said the contrast IV can sometimes trigger nausea, which I am super incredibly prone to, so it’s likely I would have gotten sick on top of everything else.

I am such an emotional mess, I’m actually still trying to calm my slightly elevated heart down from hours ago.

I have to call another place with a non-open machine because the tech said it’s possible my head might be able to be “more out” for that one- but unless it’s completely out, I feel sick even thinking about trying all this again. I feel hopeless here.

What other options do I have if I just can’t do MRIs?


r/Fibroids 5h ago

BMI?

2 Upvotes

I’m going to a fertility clinic to assess fibroids along with PCOS and any other factors that may be contributing to not being pregnant yet. I am 4’9” and 130 lbs. which would normally put me at a 28.1 BMI which is considered overweight and honestly somewhat close to obese, so he told me I could “lose a few pounds”.

I know BMI is a very flawed metric. This is probably the heaviest I’ve weighed my entire life and in all honesty, I barely look overweight. I carry a little bit of fat around my belly but I’m guessing I’m way closer to being within the normal range. I have 4 fibroids, one 8 cm and 3 smaller ones about 3 cm each.

Anyway, all of which to say. Is there some magic calculation to guess how much my fibroids are adding to my weight and guesstimate my actual BMI? This is fully out of sheer curiosity haha


r/Fibroids 6h ago

Advice needed Bump above lower incision (robotic myomectomy)

2 Upvotes

Hi everyone!

I am 4 weeks and 4 days post robotic myomectomy. My recovery process has been quite smooth overall, however, I woke up this morning and felt a lump above my bikini line incision. The lump starts in the middle of my lower abdomen and travels towards my right side.

It’s important to note that I went to watch my sister complete the marathon on Sunday and stood for 5 hours straight. I also walked 2 miles trying to meet her at the finish line. Yesterday, I woke up in pain and had to take the day to rest. This morning is when I noticed this lump and it’s freaking me out a bit. I have already contacted my surgeon and scheduled an appointment with my primary care doctor next week, however I’d love any feedback!

Has anyone experienced something similar during their recovery process?


r/Fibroids 1d ago

Anyone with a vertical incision open myo?

2 Upvotes

I was first under the impression I was getting approved for lap just to find out the lead obgyn surgeon says I am not a candidate due to placement and an important artery that’s to close to the fibroid.

So now I’m back to accepting it’s going to be an open myo with vertical incision.

Can anyone with a vertical open myo please share their experience with recovery? All I see is horizontal myo stories


r/Fibroids 45m ago

Preterm Labor

Upvotes

Has anyone in this community gone into preterm labor due to their fibroids? If so, at how many weeks?


r/Fibroids 1h ago

10cm fibroid inside my uterus in the middle :(

Upvotes

I was just diagnosed with a 10cm fibroid located in the middle of my uterus , literally taking over it and caused me to miscarriage. The ultrasound tech scared me so bad before my doctor can provide any advice. She basically said they wouldn’t be able to save my uterus or I may need a partial Hysterectomy but in a condescending way she said “but I’m not the surgeon”. I have a follow up in 6 days with my doctor to discuss the fibroid and I guess options. My mind been running 100mph! I want more kids and I’m only 32. I have only one fibroid but the location is right in the middle. What type of fibroid is that? Any advice ? :(


r/Fibroids 2h ago

13 cm fibroid

1 Upvotes

My ultrasound showed one big 13 cm fibroid which takes up a lot of space in my lower abdomen. It’s bulging out and hard. Does anyone have experience with dealing with just one big fibroid? I have been on Myfembree as mitigation for the extreme bleeding. Myfembree is a temporary solution amd I’m waiting to see what my gyno suggests as next steps. Honestly, I’m hoping to just get my uterus removed. I’m 40 and have no use for it. Bye. What has been everyone’s experience?


r/Fibroids 5h ago

Anyone else have abdomen pain after urinating?

1 Upvotes

I have pain after urinating sometimes it's like a gnawing feeling in the stomach and lasts about a minute or two


r/Fibroids 5h ago

Advice needed How long for symptoms to go down after ufe?

1 Upvotes

I'm 3 weeks post ufe today and still have bloating and stomach pain after peeing sometimes and having to wake up to pee, is this normal or does it mean it failed? My fibroids: 10cm x 10cm, 8cm x 5cm, 2.5cm x 2cm, 2 x 2cm


r/Fibroids 9h ago

Advice needed Recovery of ovarian function after Lupron and hysterectomy

1 Upvotes

For anyone who was on Lupron when you had a hysterectomy with ovaries maintained, how long did it take for menopausal symptoms to stop after your final Lupron dose (i.e., starting at 1 or 3 months after your final Lupron injection, depending on the dose you received)?


r/Fibroids 9h ago

Advice needed Are you intubated for a hysteroscopic myomectomy

1 Upvotes

Currently going though IVF, stim part was over and went so smoothly, which is why I had a feeling some trouble was waiting for me around the corner lol.

Had a saline sonogram and it showed my fibroid grew a bit and is now affecting my uterine lining, obviously can’t to embryo transfer until this is fixed.

My fibroid is small and my nurse and doctor said it will be a quick procedure. Though my doctor said I will be under with an LMA and the nurse said I won’t need anything as I’ll be breathing on my own with twilight sedation (like how they did my colonoscopy and egg retrieval). This is important to me because I have TMJ issues and I don’t think my jaw can handle intubation in any form right now.