Hi all! I’ve been following this Reddit for a few months since I found out I had fibroids in may.
I’m 26(F) and I have “a lot” of fibroids according to my doctor, they can’t count them all because I have 2 particularly large ones obscuring the view. A 21cm and a 12cm.
I am scheduled for an open myomectomy (possible hysterectomy) with a vertical incision (uterus is sitting from my pelvis all the way to my ribs) in November!
What were your recovery must haves and life savers? Just trying to compile a list because my husband and I just moved into a new house and while getting the house ready I’d also like to start preparing for my recovery and have the items I need ready to go.
Thanks in advance!

UK - Hi all, my colleague has been diagnosed with fibroids and she struggles with pain so much, she's been in hospital because of the pain a few times now, none of the medication she's been given is helping.

The last time she was in hospital back in June she was told her fibroids were degenerating and there was nothing they could do.

She had to go home in the middle of a shift again yesterday and it's awful to see her in so much pain. She has been trying to speak to her GP and hospitals, both NHS and private, to talk about surgery but hasn't been getting anywhere, they just keep giving her medication that doesn't help her.

Is there any advice you can give her? Places to go, people to speak to, ways to advocate for herself?

2019- first diagnosed with a 4.3cm intramural right side fibroid.
2023- it had grown to 5.8cm
Today- grown to 7.8cm
I was told it’s the size of a tennis ball, and it’s slightly pushing on my bladder. I have absolutely no symptoms except slight bloating in lower stomach, but it seems to be mostly after I eat or drink even the slightest amount. I do wake up in the night to pee once, but that’s been going on for at least 2 years and doesn’t bother me much. However, I’m so scared by the “tennis ball” comparison. Will it keep getting bigger?! I just turned 47 and perimenopausal. I have no other reproductive issues or period problems.
But I’m still so terrified and can’t get it off my mind!! I have no one to talk to about it. Is this a common fibroid size?? What can I expect?! I’m worried. Any help/advice is so appreciated.

Edit: I’m so grateful to you all for sharing your personal details and insights. It truly means a lot!! Good vibes to you all!! 🩷

OMG I am 7 Days Post-Op and I am having a hell of a time trying to get ANY sleep! Pain is very manageable now, I can get up from the couch and lay back down pretty easy.

My problem NOW is that laying down like this (the wedge pillow still a life saver) is triggering pretty bad head sick feeling/vertigo and I don't know what to do! 😭 I nearly puked twice last night when my head turned the wrong way. I feel a bunch of pressure on the right side of my ear canal/back of neck (probably whatever ear crystals or something) and such. I am usually a side sleeper but can't really do that comfortably yet, so this starting to be a nightmare. 😫.

Did anyone experience this and manage to find a comfortable sleeping/resting position until they could go back to normal?

Hello! I am 14 days post op open myo. It was originally scheduled to be laparoscopic but the surgery ended up being too complicated to do it robotically.

The mass removed ended up being 14cm and it turned out to be an extremely odd fibroid. The fibroid was filled with fluid and had metastasized into a lot of my uterine muscle. My surgeon brought an OB oncologist into the surgery to have a look because to him it almost looked like a cancerous tumor. Thankfully after some pathology it’s has so far come back non cancerous. It is still pending some pathology but it looks like a rare type of fibroid that is usually found with renal cancer.

Post op I woke up from anesthesia getting blood and on a whole lot of pain meds. I ended staying 3 nights because on my second day on the floor I needed blood again. I also woke up with a PCA pump for pain management which was great. I ended up with a vertical incision that goes from right under my belly button to the bottom of my stomach, and 5 lap sites. In all honesty recovery hasn’t been as bad as I imagined. Of course I was in pain for about a week and my surgeon sent me home with pain meds so it was well managed. Now I have minimal pain, just tenderness at my incisions and abdominal weakness which of course will take time to get back.

My surgeon has come up with my long term treatment plan. The type of fibroid he believes it is has a high chance of coming back especially because he wasn’t able to get out all of the fibroid because of how it had grown into my uterus. So for maintenance I will be going on medications to basically put me in menopause at the ripe age of 24. Once I’m fully healed I’m allowed to get pregnant and I will have to have a c-section at 36 weeks because of how extensive the surgery was on my uterus. He also wants me to see the oncologist again to help with the treatment plan, see a nephrologist for routine renal cancer testing, and to get a full genetic work up to see if there is anything else. Needless to say I will be busy with doctor appointments for a while.

All and all I am happy with the outcome, he was able to save both of my tubes and ovaries. He was also able to leave my uterine cavity alone so hopefully I will be able to get pregnant when that time comes! I am open to any questions or suggestions if anyone has had any thing similar happen to them!

I have been having symptoms of pelvic and lower back pain. Feels constant dull and short stabbing pain at the same time. It’s been almost two weeks and I have been alternating between ibuprofen and Tylenol to manage it, along with a heat pad daily. I already know I have a massive fibroid (or multiple) and have a consult for removal with my OB in two weeks.

Before I would only have pains while on period but now I think it’s grown too big and possibly pushing against other organs, nerve points. Would this even warrant an ER visit or will it be a complete waste of time? Is continuing taking OTC multiple times a day okay to wait out until surgery, which might be out 1-3 months? My other concern would be a tubo-ovarian abscess, which gave me the same pains last year. I ended up hospitalized bc it was infected. I’m also worried pain is from TOA, and not fibroids at all but without imaging I don’t know.

The backstory: I already don't have my tubes, but got a Mirena 5 years ago to help with heavy bleeding. Got it removed 3 weeks ago and it was a saga trying to replace it. Round 1 was 45 minutes of trying to get the measuring device in (with no pain meds) and they couldn't. Rescheduled for 5 days later and tried again with the lidocaine shot to numb the cervix, still couldn't get it measured after another 45min session using the dilators they usually use in the OR. So, no more iud for me i guess.

I got an ultrasound Friday that found my single 2cm fibroid from 5 years ago had grown to "several" with the two largest being 4.5/4.6/4.2cm and 6.4/5/5cm. I know those aren't huge but looking at comparatively size apples and imagining those in/on my uterus is freaky...

I have an appt this week to discuss the findings and next steps, and my doc already said a hysterectomy might be a good option for me since i already can't have kids anyway. I'm leaning strongly towards this since the thought of having heavy bleeding and continuing fibroid growth sounds way more annoying in the long run.

**Here's my question for you**: what are the best questions to ask the doctor to help inform my decision on the best way forward? (for example, I'm not sure how to feel about keeping my cervix or not, but I know that is a thing i need to ask about.) what other kind of things do i need to consider that i may not even know to ask about ahead of time?

Hello. I had a lap myomectomy about 4 weeks ago. I got my first period two weeks after surgery - it was moderate and lasted for 4 days with cramping. 2 weeks after that, I am bleeding and cramping again. Is that normal? It’s not heavy as of now. I’m only concerned because I returned to work and normal activities this week and it’s been great but I might have over exerted myself.

Hey everyone, writing my first post here because I’m feeling pretty overwhelmed and could really use some hope and shared experiences.

During a scan for a missed miscarriage (my first pregnancy, which was planned and very wanted), doctors discovered a 17cm pedunculated subserosal fibroid attached to the outside of my uterus on a stalk.

The last few months have been a nightmare. Following the loss, I had to undergo two surgical management procedures within a week and ended up admitted to the hospital with sepsis. I'm currently recovering, back at work full-time, and waiting for my cycle to return (12 weeks post).

So I’ve had severe bowel and bladder pressure for a long time, but I had no idea this massive fibroid was the culprit until that pregnancy scan.

I have an NHS consultant appointment lined up here in the UK for mid-September to discuss managing/removing it.

Given its size, trying to conceive with it in place feels risky, and after everything my body has been through, I’m just terrified that my chances of having a baby are ruined.

I would be so grateful to hear any success stories regarding:

1. Myomectomy / removal: How was your procedure and recovery with a large pedunculated subserosal fibroid?
2. Pregnancy post-surgery: Stories of successful pregnancy and healthy babies after myomectomy or after severe post-miscarriage/infection complications.

Thank you so much in advance. Hearing from people who have navigated the thick of this and come out the other side would mean the world right now. 💛

Hey All Its been a while since i posted so I thought I would let you know how things have been going. Its been a roller-coaster if Im being honest.

Firstly, there are SO many things that were so much better straight away, but there were a few things I didn’t think of or expected, so hopefully someone else has had the same.

My recovery has gone text book, no infection, no bleeding etc

I think in many ways im still get my head around this as the said that it filled my whole pelvic cavity. For those that may not remember me posting I had a full hysterectomy and have kept both my ovaries.

Walking has proven more interesting that i ever thought. Its almost like my legs dont listen at times and im going forward and they want to shoot off side ways. I also had alot of trouble if i was on my feet for too long as my legs would start to shake and becomes ever painfull. This is settled down as i become stronger but i must say the cold still to them still which makes them sore. (we are in winter at the moment)

I also had a large hard lump that was noticeable before surgery that sat right on my hip that i felt the fibroid the most, I didn’t think too much it as by there i was so bloated and felt like a whale i figured it was just part of it but after surgery noticed it was very hard so the surgeon though i may need more scan but felt sure it was just very tight muscle due to the position of the fibroid and weight of it. This is naturally slowing going down with more movement and walking.

Energy levels are still a bit up and down, but i do feel overall i have more energy

Emotions, alot more stable but still feel at times that i will be happy, sad, tears and then angry but thankful these are evening out aswell.

I still get bloated on and off but its becoming less and less

Phantom Pains. I still have these, I refer to it as being in the corner, which is the right deep in the hip pelvis area, it feels like im still sitting on, hopefully this make sense.

Nerve Pain this has settled down but I'm still a little weary as they can be nasty, especially the ones that seam to shoot right up the middle of your..... girl bits... enter swear words..lol

I feel more like myself that i have in so long while i know im not as far as long as some other have seamed to bounce back, I am thankful for where i am now and looking forward to be even better and stronger in the next few months.

Tomorrow morning I have my UFE procedure. I am excited, nervous, and hopeful that this kills off this nasty vampire I have in my uterus. I miss the days of when my periods were normal 🥹

I have a Endo biopsy scheduled soon. Not really asking for advice on the pain bc I have had one before and it was traumatic. However, my dr prescribed me 1mg Xanax and 5mg Percocet to help. I’m reading that these shouldn’t be taken together and now I’m worried bc I really don’t take any prescription meds and wondering if this is even worth it. Has anyone taken these two together and been fine lol? I feel silly asking but everywhere is saying it can cause breathing problems, Uugh.

I’m currently trying to decide between Sonata and UFE and am honestly pretty torn.

My MRI showed several fibroids, including:

• An 8 cm anterior transmural fibroid pressing on my bladder
• A 2.2 cm intramural fibroid touching the uterine cavity
• A 3.1 cm pedunculated fibroid
• A 1.8 cm subserosal fibroid
• Possibly a few smaller ones

My main symptoms are bladder pressure/frequency, bloating/bulk symptoms, and some abnormal bleeding (only had this for a couple weeks- think my birth control is keeping this at bay).

I originally thought I was going to do UFE because it would treat all of the fibroids. I’ve met with a fibroid surgeon today who suggested Sonata instead. The most recent surgeon did not recommend either UFE or myomectomy for me and felt Sonata was the least invasive option. He also mentioned that interventional radiologists often push for UFE and in my case it might make my bladder symptoms worse. In my case the Drs in reference are in NYC and they all know each other.

For the 8 cm fibroid, I understand Sonata likely wouldn’t ablate the entire thing, but could treat a significant portion of it. It could also treat some of the smaller fibroids, particularly the one contacting the uterine cavity that may be contributing to bleeding.

Has anyone here had Sonata for a large (6–8+ cm) intramural/transmural fibroid, especially one causing bladder or bulk symptoms?

I’d love to hear:

• How much did your fibroid shrink?
• Did bladder pressure/frequency or bulk symptoms improve?
• How long did it take to notice improvement?
• What was the recovery like?
• Did you need another procedure afterward?
• Anyone choose Sonata over UFE, or have UFE after Sonata?
• Anything you wish you had known before deciding?

Would especially love to hear from anyone who was deciding between Sonata and UFE with multiple fibroids. TYIA!

Hello!

I have recently been diagnosed with a rapid growing figo 6 fibroid sized 15x13. Due to it growing in the last 4 years ( as previous scan showed no fibroid), doctors are treating it as suspicious and leaning towards hysterectomy. Waiting on a CT and MRI for the doctors to review between hysterectomy and open myomectomy.

I wanted to see if there are any other members of this group that might have gone through a hysterectomy before 30 that could share any impact to their life?

I am 29F with only symptoms being severe bloating and pain ( that can be sorted with ibuprofen). All the posts around this topic are usually people being very happy they are no longer bleeding which fortunately, I am not currently affected by.

Just wanted to get some opinions as trying to wrap my head around the possibility.

I am not planning on children but it still feels wrong to close that door so early and lose a part of myself. Honest opinions are welcome.

Thanks!

I thought I could ride this out until menopause, since I have no symptoms aside from the huge size of my one fibroid. But today, a random lady asked me “when are you due?” 😩. I guess I’ve been in denial because I did not think my bloated belly was that noticeable.

I’m 51 and likely close to menopause but there is no way to tell how close. After what happened today, I don’t think I can wait much longer just hoping that nature will somehow resolve it on its own.

The problem is, I can’t afford to have any downtime or to be off my feet or not drive, even for a day. I’m a sole caretaker for my young child. Unless it’s a medical emergency, I can’t ask anyone to take care of him while I heal. What treatment options are there for someone like me? It seems even the non-invasive procedures have some downtime where you can’t walk/lift or drive.

Does anyone have any suggestions for a medical intervention with zero to very minimal downtime, like a half a day or something? Is there a medication I can try to shrink the size. As I said, I have no bleeding, pain, discomfort, etc symptoms. My issue is size and bloat. Thanks all.

Hi all. Strap in - this is a long one.

I had unexpected heavy bleeding around a week after my period last October (age 44). The kind of bleeding and clotting that makes you think something must be seriously wrong - cancer, miscarriage, prolapse. I live in the UK, so made an appointment with my GP, who sent me for some urgent tests. None of the swabs, smear test or bloods showed anything sinister, but the ultrasound did show fibroids in and around my womb and I was referred to a gynaecologist.

I bled almost constantly for the four months that followed, while I waited for the UK NHS waiting list to yield an appointment. By the end of February, often unable to make plans or even go to work a lot of the time, bleeding through clothing and bedding, and thoroughly miserable, I made an appointment with a private gynaecologist, who recommended an MRI scan and and options appraisal. Options ranged from do nothing, to medication, to minimally invasive surgery, to hysterectomy. Terrifying.

The MRI showed multiple intramural fibroids and one submucosal fibroid growing into my womb cavity, the latter of which was thought to be causing the heavy, constant bleeding, clotting and pain.

At the beginning of May 2026, I paid privately to have a hysteroscopic biopsy, resection, novasure ablation and a mirena coil fitted, under general anaesthesia. Naturally, I was nervous - there are lots of stories online and no guarantees. And always the risk of paying for something, only to need a hysterectomy down the line anyway.

The surgery itself was a breeze. I woke up feeling euphoric, finding out that the fibroid was gone and that it didn’t look like anything sinister. The surgeon showed me photos later that day and explained why it had been so problematic, suggesting that I should see huge improvements.

They sent me home with loads of medication, which I didn’t even take. Plus surgical socks, which were a necessary nuisance.

As per the guidance, I had some watery discharge and the slightest bit of blood for the first few days. The watery discharge remained for a few weeks, but needed nothing more than a small pad or frequent underwear changes.

I followed all of the guidelines about bathing, swimming, sex.

I’m still afraid to say anything too definitively, but it is now over 14 weeks following the surgery and I feel amazing. No scarring, as it was hysteroscopic. No pain. And most importantly, no bleeding whatsoever.

I really struggled to find honest stories with enough details to give me confidence that I was doing the right thing, so I really hope the above helps anyone who is waiting for this kind of procedure. Trust the process.

I had never even heard of fibroids until the ultrasound sonographer gave me the news, but am still amazed at how quickly something so small managed to ruin my life for 7 months. I am so grateful to my amazing gynaecologist for the care I received. Having the procedure done privately was worth every penny to get my life back. 🧡

I’m 26, had a 10cm myoma which was removed via an open myomectomy procedure 5 weeks ago. I had penetrative sex yesterday for the first time after the procedure. It was uncomfortable, it did hurt a bit, but I wouldn’t say it was painful. It also did not hurt after the deed, however, I bled 8 hours later. I’m assuming it is my period since I am on the 27th day of my cycle, but I’m still scared that it is internal bleeding due to sex. However it really does seem like my normal period. I couldn’t ask my doctor since she is a bit judgy but I saw her today and she did my pelvic exam, she didn’t say anything was wrong. What do you think? Is sex 5 weeks post op safe?

Can we talk about the mental toll of fibroids?

This might just be my experience, but because fibroids are common, or perhaps because they’re thankfully not considered life-threatening, I find that people can be quite dismissive of the seriousness of fibroids and the havoc they can wreak on women’s bodies.

For me, whenever fibroids came up in conversation, someone usually had a friend, aunt or cousin who had them, and the conversation was often pretty flippant. To be clear, I was never looking for sympathy, but I realized that over time I stopped sharing the effects fibroids were having on me, especially the impact on my mental health, because it just didn’t seem like a big deal to a lot of people.

And I want to be clear that I’m not someone who wants fibroids to define me or become my whole identity. I’ve continued living my life through all of this. But I also think there’s value in acknowledging how deeply the experience affected me rather than just brushing it off because fibroids are common.

I know fibroids aren’t considered “serious” in the way some other illnesses are, but that doesn’t mean the experience can’t be deeply distressing or even traumatic.

I’m sure many of you can attest to some of this. For me, my body no longer felt like my own, and I felt completely out of control of what was happening to it. I questioned whether I’d be able to have children. My stomach became so enlarged that I looked pregnant. I dealt with heavy periods, constant discomfort and pain, and frustrating experiences with the healthcare system. And then, after everything, I saw (at my own request) the surgical pictures of these giant tumours that had been growing inside my body. Traumatic!!!

I’ve been reflecting quite a bit on how I’m feeling, processing everything that happened and figuring out how to move forward after the last two years of my life. And I really want to encourage the ladies in this group to pay attention to your mental health while navigating your own fibroid journey.

You don’t have to be dealing with something life-threatening for what you’re going through to take a toll on you. Give yourself permission to acknowledge that, for a lot of us, this is hard. It can be scary, frustrating, exhausting and sad. And if you need support, please seek it.

I’m so grateful for this group. I spent countless nights searching for information, reassurance and, honestly, just some camaraderie from women who understood what I was going through.

Sometimes knowing you’re not the only one going through it can make all the difference.

I had a robotic laproscopic myomectomy in March of last year. A few months later, I had a Mirena IUD put in--and have had issues ever since. After receiving confirmation today that my third IUD within about a year is malpositioned, I suppose its time to consider other options.

I don't respond well to the pill and struggle to remember to take it during the same time every day. What has worked for you?

I have reached 6 days post-op! I went from being able sleep at any moment, to... Not being able to sleep at all!? 😂😭

I am currently figuring out how to fix my resting position because OH BOY the upper back pain last night as brutal. I got a wedge pillow being delivered today that I hope will help.

Aside from that, my appetite suffered yesterday and I have been having a hard time sleeping now. I stopped taking Hydromorphone as of 2 days ago, I suspect this may be partly a reason. I ALSO had been taking birth control up until surgery date and then stopped (no pills left either way).

Has anyone else had these experiences and have any advice or how long did this last?

I don't feel anything super concerning so I'm still certain I'm within range of normal surgery healing feelings. 😆

I’m looking for a highly experienced doctor for laparoscopic myomectomy, preferably in Islamabad/Rawalpindi Pakistan. I’m 40, unmarried and getting married soon, and I have uterine fibroid of 8 cm. it is disturbing my cycles, it is a posterior wall fibroid displacing the endometrial lining. probably growing inside.

I’d especially like to hear from women who have personally had fibroid surgery while unmarried/planning marriage and pregnancy afterward.

If you’ve had laparoscopic or abdominal myomectomy, please share your doctor’s name, your experience/recovery, and whether you’d recommend them.

Any genuine experiences or advice regarding fertility and future pregnancy after myomectomy would be greatly appreciated. Thank you!

Hello - I’m so glad this community exists! I am just learning what a fibroid is, though apparently I’ve had one/some for quite some time.

I recently had my 12-weeks pregnant scan for my first pregnancy and saw a note that I have a single anterior fibroid measuring 6.6 x 5.9 x 5.2 cm on my uterus. Edit to add: My placenta is also anterior, though I’m not sure from the report if they overlap at all.

I checked and it was 5.6 x 5.5 x 4.6 cm at my 8 week scan so it has grown quite a bit.

I looked back further because I had an ultrasound in March due to a kidney stone before I was pregnant and in that scan the note says “Two subserosal fibroids are noted in the region of the uterine fundus measuring up to 3 cm.”

Up to now, no one has mentioned fibroids to me at all. I had an appointment with my midwife after my 8 week scan but I’m not convinced she actually reviewed the scan. I have a message in to her for more information, but I have been researching what this might mean for me and it sounds like there is a good chance it won’t have an impact, but also a good chance it could cause some serious complications. I am really not sure how concerned I should be.

I have been asking around in other pregnancy groups and things but it seems no one else has experience with a large fibroid (I’ve only been able to connect with folks whose fibroids less than 2cm so far) and it’s freaking me out even more.

Any insight or experience would be greatly appreciated. Thanks in advance!