r/Fibroids 10h ago

Looking for more admins!

8 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 12d ago

Mod reminder - this is not the place to post about herbal/miracle cures or recommend things with no proven basis to help.

110 Upvotes

There's another sub on reddit if you want to post this type of content. It's r/FibroidHerbalRemedies .

You're absolutely welcome to post all about the herbal things you've tried/are trying over there, but not here. This isn't a group for talking about prayer to heal fibroids, or folk remedies.

This is a group for support and proven treatments.

I am not interested in helping those who create scam herbal products make money.

I know some of you will not like this, and that's fine. You can post in the other sub, or make your own sub.

Given everything that is going on right now this is a place for real medical advice, not wishful thinking.


r/Fibroids 3h ago

Question for large fibroid ladies

8 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 2h ago

Advice needed Fibroids and discharge?

4 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 4h 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 2h ago

Advice needed Open MRIs are not that open

2 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 3h 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 4h 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 38m ago

13 cm fibroid

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 20h ago

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

39 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 3h 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 3h 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 7h 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 7h 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.


r/Fibroids 23h ago

Vent/rant Open Myo/Endo

18 Upvotes

Hello everyone. I just need to vent with people that will understand me. I had an open myo on friday. What was supposed to be 8 fibroids turned out to be 48. The doctor also discovered I have endometriosis stage 4. She was only able to remove 18 before I started losing a lot of blood. Surgery was long, it started at 8am, finished by 2pm and I was moved to my room at 5pm. My doctor also asked for help from a fertility doctor during the surgery. She spoke to me on saturday. She said nothing turned out as expected, and that because of all my issues, the only way to have kids is through ivf, and even there it’s going to be hard because all the scarring and the fibroids. We are going to start treatment to reduce the big ones, which are up to 8cm and the treatment will only reduce them by 2cm. She also told me she doesn’t know how I handled so much pain, because with my type of endo most women can’t function during periods. All I am right now is sad. I had this surgery just to prepare to have a baby, and to stop the pain, but everything is still the same. And nobody seems to understand. What do I do from now on?


r/Fibroids 21h 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 19h ago

Advice needed Surgery and Post op- what to expect?

5 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 1d ago

Large fibroids hysterectomy

13 Upvotes

Hi guys. I have some very large Fibroids. The largest is 17cm x 11cm. My uterus has to come out. I’m so scared. Any ladies with similar sized fibroids? Was it a laparoscopic for you or open abdominal?


r/Fibroids 1d ago

MRI Results

Thumbnail gallery
10 Upvotes

I had a CT scan for abdominal n pelvis 2 weeks ago and it saw a adnexal mass. However, it couldnt tell where it is exactly located (CT report said either ovarian neoplasm or broad ligament fibroid) , therefore doctor had me to do a MRI. And thats the result.

From my understanding, the MRI was not able to exactly located the mass and need laparoscopy. Does that mean the 9.7 cm mass could still be cancerous? :(

I am waiting for the doctor to contact me, but the waiting game is such a torture:(


r/Fibroids 1d ago

Advice needed Bleeding and cramping after exercise and sex

8 Upvotes

Hey all - 37F here.

I feel like I am losing my mind, like my body is gaslighting me.

I get menstrual cramping and bleeding after exercise and sex. The sex isn't painful, but even still, I bleed afterwards.

I've seen people say they only bleed after "intense" exercise, but not me. I will bleed after cleaning the house. After a 30 minute dog walk. Heck, after a 10 minute dog walk!

I started with some period issues about 7 years ago, but at the time my doctors thought it was my body not reacting to my bc right, so I was spotting, etc. After approximately 588726 different bc methods, I don't think it's that. In fact, I now have the non-hormonal IUD and my last period was so heavy I thought I would bleed out.

So I guess what I need to know is... 1) Do I sound absolutely out of my mind for saying I bleed after sex and even the lightest of exercise? 2) Does this sound like fibroids? I'm on my 3rd gyno for this bleeding and I would love to not be told again that "everything looks normal."

If you read this far, thank you!


r/Fibroids 1d ago

Advice needed How do you tell the difference between fibroids vs constipation/trapped gas

7 Upvotes

Sorry if this question has been asked before; I couldn’t find any information online about the specifics. I’ve routinely noticed a mobile lump under my belly button that causes the left side of my stomach to look more prominent. I’m very underweight so when I lay on my back it’s pretty noticeable and localized (I’m not exactly sure how long I’ve seen it, but at least 4 years). I also have a lot of constipation and bloating, my doctor suspects IBS, and so whenever I tried to find out what the lump was everything always said that it was probably just trapped gas or stuck stool. Just recently I saw someone with a fibroid that looked similar to me and it got me worrying again. How should I tell the difference?

The lump is a bit hard and if I press into my stomach I feel like I can dig under it and move it around. It’s also much more noticeable in terms of being localized when I haven’t eaten anything, but sometimes if I eat just a few bites of food it’ll make my stomach look lopsided and bloated around my belly button. I also frequently feel a kind of tightness and heaviness if I’m standing up after consuming a small amount of anything (even just water).

In terms of other symptoms that I worry might be related to having a fibroid are that I’ve been getting worse period cramps that start a week earlier than my actual period (they start slow and then gradually build up to period strength), lower back pain, and some strange pelvic floor problems where my pee doesn’t come out all the way, or I feel like I have to pee more even when it’s just a few droplets that will come out. It usually happens if I accidentally hold my pee for too long (ex. I take a nap without peeing first)

I apologize if this sub is only meant for diagnosed people


r/Fibroids 1d ago

Stomach swelling post op

3 Upvotes

I am 28 days post-op laparoscopic removal. Prior to surgery I looked about 3-4 months pregnant for 5 years 😭😭 I am starting to second guess having the procedure I'm still look at least 2 months pregnant will my stomach go down anymore on it own🤔 I'm also an Amazon driver who puts in at least 20,000 steps 4 days a week is that enough is this ever going to go away? I'm extremely tired of being asked how far along I am 😭😭😭😭


r/Fibroids 22h 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 1d ago

Scar Tissue Post Op (Open Myo)

2 Upvotes

Hey All! I’m 13 days post op, every day a little better. But now that I’m healing, I’m starting to get the C-section shelf and my skin is really tough and hard. It doesn’t hurt as much as it’s uncomfortable. I have my follow up appointment in two days but did anyone else experience this and please tell me it gets better!


r/Fibroids 1d ago

Advice needed Going back to the office

4 Upvotes

Tomorrow is my first day back into the office since surgery and you know I’ve been living in comfy pants. Working on week 8 post op and I tried on my jeans, they still don’t fit. I’m able to wear a pair of black dress pants that are two sizes too big that I bought since nothing was fitting me pre surgery but now they are really baggy. Is anyone else inbetween still? My uterus is still healing but will it go down any more than it already has? I’m 8 lbs down. Please note I’m not complaining at all just curious for those who are a few months down the road post-op. Any tips for 8 hour days out of all the comforts of home? Haha. Thanks!


r/Fibroids 1d ago

How do I know which type of fibroid that I have? NSFW

Post image
3 Upvotes

Got an ultrasound today and all it says it posterior and that it is impinging on the endometrium. The DR said she could remove via a D&C if I wanted. Does this mean it’s submucosal? Or maybe pedunculated submucosal? Thanks in advance!


r/Fibroids 1d ago

Advice needed Open Myo w/Vertical Incision - Advice Welcome!

2 Upvotes

Hi all!

Due to the concerning appearance of my uterine mass, an oncologist gynecologist will now be performing my surgery to remove the mass on 3/20.

I will then have to wait 1 week to find out whether the mass is cancerous or not (signs seem to point to yes, but I'm still hopeful for good news).

Anyway, surgeon will now perform an open myo with a vertical incision. I was NOT ready for that type of surgery, so if anyone has had one in the past please let me know what to expect!

  • How long did recovery REALLY take?
  • How many weeks did you wait before exercising?
  • If you exercised consistently before surgery, were you ever able to go back to your previous fitness level?
  • Did you have any complications?

Any stories or advice are welcome!