r/Fibroids

I just had my 6 week post op appointment yesterday and honestly, it's just another joke about Canada's health care system. First off, the appointment is a 2 hour drive, so it's a big deal every time we have to go. And in true Canadian Healthcare fashion, even if you have an appointment time it can be a 1-3 hour wait.

The very first thing they made sure to ask me was if I brought money for the stupid paper the Dr. Had filled out for my unemployment (financial assistance being off for medical) which he only had to put the dates, sign and his license #. $50 cash.

My surgeon left a small fibroid in my uterus due to the nature of my surgery (behind schedule, had to be converted to open from laparascopic, a large amount of blood loss) and when I tried to ask him details about the fibroid that was left behind his answer was basically "I don't remember"... excuse me? Don't you have your little notes right in front of you? He didn't even bother to check and tell me the information I was looking for. He just said "I wouldn't worry about it, these things take years to grow."

I also have stitches still in one of the laparascopic incisions I wanted him to look at, which he did but his exact words were "just take a wash cloth in the shower and start scrubbing the shit out of it and it should fall off"... wow, thank you.

Basically I just felt like it was all a bit of a brush off, he did the surgery, he got paid, he's done. He is a good surgeon, dont get me wrong I'd go to him again, he's just not the best at the rest of it.

​

Hello! Hoping to pay it forward to the next person prepping for surgery as this sub helped alot!

​I am currently home recovering from a laparoscopic myomectomy and mini-laparotomy combo that was performed on May 11th. The surgery was five hours long, and though I lost a fair amount of blood, I did not need a blood transfusion. I spent six hours in the PACU before being sent home the same night. I have six incisions sealed with surgical glue: the typical "keyhole" incisions in my abdomen (two on the left and two on the right, slightly above my belly button), a belly button incision, and a very low bikini-line incision.

​The pathology report noted the tissue removed was roughly 17 cm x 15 cm x 5.5 cm—about the size of two grapefruits, one lemon, one kiwi, and a grape combined! Best of all, it came back non-cancerous! Yay!

​These fibroids have been an issue for years, causing terrible, heavy, painful periods, back pain, constipation, frequent and urgent urination (along with leaking), bladder pressure, fatigue, and bloating. Most seriously for me, they were causing infertility; due to their size and location, I had no chance of getting pregnant.

​Recovery has been significantly easier than I anticipated, and I felt immediate relief from the fibroid removal. The bladder, intestine, back, and abdominal pain and pressure are all gone!

​Days 0 to 3 were tough, and I required a lot of support with bending, reaching, getting in and out of bed. Also had vaginal bleeding. I CAN'T RECOMMEND A WEDGE PILLOW AND DISPOSAL UNDWEAR ENOUGH! However, I was able to have a bowel movement on Day 2 (thanks to taking stool softeners every 12 hours starting as soon as I got home from the hospital) and take a shower. The shower exhausted me, but it made me feel so much better in its own way. While Day 3 still required some support, I was independently mobile. By Day 4, I turned a positive corner in my recovery; I no longer required oxycodone and was managing most of my needs by myself. One week post-op, a friend joined me for a walk in the neighborhood. I did push myself a bit too hard that day by cleaning, so I ended the night sore, but it was nothing a little ice and a heating pad couldn't solve.

​I have been walking since Day 1. For the last three days, I averaged around 4,000 steps each day by keeping my walks to about 10 minutes multiple times a day, in addition to general movement around the house and backyard. Yesterday, I went to BJ's, and the errand was completely painless. Today, I am going to the movies just to get out of the house.

I used oxycodone the first 3 days (a total of 5 pills) and ​I alternated Tylenol and ibuprofen for the first five days. On days 6 through 8, I only took Tylenol and Ibuprofen as needed, and yesterday and today, I haven't needed any pain medication at all.

​I was given six weeks off from work, and I am going to take the full time to ensure I heal completely. I am a teacher and cannot imagine making it through a full day on my feet without being able to rest. I naturally wake up at 6:00 AM right now but hit a wall of fatigue around 2:00 PM.

​The one thing I still require support with is my dog. She weighs 70 pounds and is a puller, so I can't take her for walks. I also can't sleep with her since she likes to burrow near my abdomen, so she has been sleeping with my partner in the guest room.

Feel free to ask my anything! Good luck to anyone who is still navigating their journey 🙏🏼

I spent YEARS thinking it was normal to feel exhausted, bloated, heavy, uncomfortable, and inflamed all the time.

I genuinely thought I just had a sensitive stomach or was bad at handling discomfort.

I had NO IDEA I had a 14 cm fibroid until I went to a new gyno to replace my Mirena IUD. During the exam, she immediately felt it and knew something was wrong.

Within weeks, I was scheduled for surgery.

I’m now 6 weeks post-op from a laparoscopic myomectomy, and what shocks me the most is that I somehow feel BETTER recovering from major surgery than I felt before surgery.

That’s how much pain and fatigue I had normalized.

Recovery honestly was much easier than I expected. Week 1 was slow and sore, but every single day improved.

Now I’m back outside working in my garden and no longer constantly needing naps.

Just wanted to share in case another woman out there is convincing herself that feeling terrible all the time is “normal.”

So this is a weird one. I had a subtotal hysterectomy (kept ovaries & cervix) but had my uterus removed. it had at least 6 fibroids. im 9 days post surgery but I thought I noticed immediately the day after surgery.

My face SEEMS less swollen?

Ive looked it up & it could be a 'thing'. Your body releases cytokines in response to the fibroids & also cortisol.

Cortisol makes your face look swollen.

My face seems less puffy & Im sleeping better! & I think its because of the drop in Cortisol (because my body isnt making as many cytokines). thats my theory anyway.

Has anyone else experienced this? Your face looks less swollen (puffy) & an improvement in sleep quality & ability to fall back asleep post surgery?

I am not on any serious pain killers. Just panadol (2 tablets of paracetamol) so that wont affect my sleep.

Hey hey.

I had a UAE on Tuesday, I had a rough time in recovery with pain management. Was in hospital for two days on ketamine and morphine drips.

Just keen for thoughts on what helped people manage for the days afterwards.

I am home and taking all the painkillers in the order given.

Just struggling with ongoing cramps.

Anyways - keen for what helped people manage - both with pain and trying to feel normal and mentally well!

Hi folks,

My fibroid flares are becoming more frequent and less controllable with meds. I plan to discuss possible embolization with my doctors, but I will be undergoing radiation therapy soon for DCIS, and, well, one thing at a time!

I was just hoping to get your best tips for recovering from anemia, as it's a lot to deal with on top of having POTS. I am trying to keep my blood volume up so my body fills it with new red blood cells, and taking iron, folic acid, and B12, but I am wondering what else folks recommend for recovery.

My 12cm submucosal/intramural fibroid was discovered via ultrasound on 01/27. I consulted with three gynecologists and was (until yesterday) scheduled for my procedure on 09/04. I just got the call yesterday that there was a cancelation so I am now moved up to June 3rd - just two weeks from now!

I am going with a minimally invasive surgeon and pending MRI results from last week. I am only 29 but positive I dont want kids. I can't help but be anxious about things going wrong or possible side effects. for those of you who have had hysterectomies at least six months ago or longer - how do you feel now? any unexpected or disappointing long term effects? what kind of procedure did you have? anything you wish you could've done differently? not asking about regrets as to having children - speaking more physically, emotionally, etc. Your wisdom would be appreciated as I dont have anyone else i can talk to about this besides ChatGPT and i prefer not to use that as a source

Hi gang!
I’m 32F diagnosed with multiple fibroids in November after experiencing persistent pelvic pain, heavy period and horrible cramps.
My doc put me on mifespristone for six months. Got a scan last week that showed no meaningful shrinkage. But scan now shows signs of endo and adhesion of ovaries and backside organs, which explains my chronic constipation and distress before and during menstruation.
Doc advising myomectomy and lapro clearing of endo plus a hysteroscopy. But also says that there’s 50% chance of it coming back. She’s also prescribed some hormonal meds elagolix that can cause hot flashes and loss of bone density before the surgery and also after surgery.
I don’t want to medicate anymore. The six months I was on mifes, I was having hot flashes and losing sleep and my immune system took a big hit. I would choose pelvic pain a few days a month over losing sleep every night.
I want to do the surgery though if that means there’s a 50% chance it will not return.
Anyway wanted to ask if there are other ways to manage fibroids and endo post surgery without medication? Is anyone on elagolix? Is it worth the trouble?
I’m not sure I want to get pregnant so it’s not about protecting my fertility. .

Hi all. I wanted to share my story because in my research, I’ve read so many negative experiences. Hopefully this will give another person who is struggling with fibroids hope.

I had been experiencing increasingly longer and heavier periods over the last few years since being in my late 30s to early 40s. I am 43 now. I used to have normal periods that lasted about 5-6 days, with bleeding that I felt was manageable and tapering off on the 4-6th day with light bleeding to spotting toward the end.

As I got older, I started to experience periods lasting 7 days. I remember I was about 38 and wondering why I still had light bleeding on the 7th day. I dismissed it and figured it was due to aging. Then I began to have periods lasting between 8-10 days and they became heavier with bleeding soaking through ultra tampons every two to three hours. Eventually my periods became consistently 10 days with several days of super heavy bleeding and often times literally bleeding out of my clothes. An ultra tampon would last 30-45 minutes. I had to double up with overnight pads too.

I’ve experienced Niagara Falls bleeding out in numerous places such at work, at the gym, and even on stage at a bodybuilding show (I compete). I had an ultrasound done in 2024 which revealed about a 3cm submucosal fibroid and several smaller ones (forget which kind but I believe intramural). The submucosal was in my uterus and was causing the most issues.

I began having severe anemia symptoms late 2024 (dizzy, out of breath doing normal activities like walking a flight of stairs, constant fatigue, dream like waking state). I got a blood test and was told by my doctor to immediately go to the ER as I had life threatening anemia (level was 6). I had a blood transfusion and subsequently several iron injections over the next several months. I was also prescribed Mirena. Birth control itself was fine, but it never helped with the bleeding. In fact, it became worse that I was given norithendrone acetate and another birth control.

I had strongly considered a hysterectomy, but was suggested I try a UFE first. I am so glad I did. My team prescribed pain and anti-inflammatory medication 3 days prior to the procedure. The procedure itself was painless, as I was sedated with IV via my hand. I woke up and never had any pain, just some fatigue for a few days. I never even needed the extra medicine they prescribed even though I continued to take it for a couple days after in case of pain. I was back in the gym at full strength in two weeks (I was actually feeling fine after a week, but was cautious).

My next period was still about 9 days, but I didn’t have any heavy bleeding and really just spotting from days 5-9. Same with the next period.

I was recently (1 week ago) given a hysteroscopy due to doctor being concerned for potential fibroid matter breaking down in the uterus. The submucosal was over 6cm and took up my whole uterine cavity! Doctor removed it and fitted a new IUD (due to malpositioning of my old one). I have very tiny spotting which is increasingly better for a week now. Today I had none.

I hope to continue in this trajectory because it’s literally changed my life for the better.

hi all. a follow up on my previous post which i’ve linked here

so i had the surgery yesterday at 4pm, it is currently 5am the following day. to say i am heartbroken is an understatement, i have not stopped crying since i woke up.

firstly, the open myomectomy was unsuccessful. my surgeon only got 1-2 fibroids as i was bleeding too heavily. he stopped the surgery as i either would have needed a hysterectomy or would have died from blood loss.

secondly, the surgeon told me he would much prefer to do a horizontal bikini cut, however after viewing with a camera via laparoscopy, due to the placement and size of my fibroids, a vertical incision was made. i was aware this was a possibility but didn’t care as i really wanted them all out.

third, the surgeon advised that due to the severe distortion of my uterus and placement of my fibroids, i will never be able to have children. given an embryo could even implant, there is no way a pregnancy would be viable and carry to term in such an environment.

this has broken my heart. i did this surgery because living with fibroids has exhausted me, and because i so desperately want to have kids.
i’ve come out of it with pretty much all my fibroids in tact, a 13cm vertical incision which is much more difficult and long to recover from, and the news that i will never bear children.

to top it off i was told an open myomectomy would dispel pretty much all the gas from the laparoscopy. but i have been up since 2.30am and it’s currently 5.15am, partly due to emotional distress and partly due to the gas. the crying hurts real bad but i cant seem to stop. they’ve given me gaviscon (degas) and ive taken palexia.

i feel so betrayed by my own body.

what do you mean i’ve had major surgery with a vertical incision which is much harder and longer to recover from, but i still have most of my fibroids?

an open cut meant to dispel gas but here i am at 5am crying bc the gas pain is terrible?

every time i close my eyes i have these dreams that make me cry. i hope so badly to go to sleep and wake up to it all being a bad dream.

my husband is my angel. his support and love have been unwavering, he has told me from the very start it’s the two of us no matter what outcome. and yet i feel so guilty that i can’t fulfil our dream of having kids. i apologised to him last night and he cried so much and told me to never ever say sorry to him for this. i know logically it’s not something i can control but fucking hell i still feel so angry at myself.

the surgeon advised that there is a chance to freeze some of my eggs. only, there are so many fibroids and my uterus/fallopian tubes/ovaries are so cramped that they would not be able to get to my ovaries without performing a full hysterectomy. if they tried to remove fibroids to get to my ovaries, i would bleed out and die.

my older sister has 3 beautiful healthy children. she told be before the surgery and again upon waking that she will carry my children for me. i am so grateful to her and my supportive family. i’m not sure what route we will take as i will need to heal fully before doing anything.

i just don’t understand.

i’m 29. healthy. i thought this would help me get on track and begin the journey to motherhood.

it’s not the fault of the surgeon, not the myomectomy, that i blame at all. this would have been my reality regardless of surgery.

sorry for the long post. i don’t think ive ever been this distraught in my life. i’m trying to have hope but it’s so fucking difficult lying here in pain knowing in 2 weeks i’m going to get my period and deal with the burden of fibroids on top of recovery.

i’m sharing here because i know some of you will understand. i’m so thankful no one in my life has gone through this but it is really really isolating and i don’t know what to do or how to think.

how can i go back to normal life after this? what does work matter? my mortgage? what for if not for the future my husband and i have been working so so so hard to build for our children?

yikes i wrote a lot. but the journal factory blew up lol so i had no choice.

if you’ve read this far, thank you.

For context,

Back in 2024 I had a hysterectomy due to adenomyosis. My obgyn at the time said she also suspected Endo and would check and remove it if I did. When I woke up she told me she found endometriosis on my uterosacral ligament on the left side (which is where my pain was) and that I had a lot of adhesions which she mentioned was odd since I had no prior abdominal surgeries. I felt very validated. However, pathology came back positive for Adenomyosis and negative for endometriosis for the sample she sent off. She told me it's common for pathology to mess up the sample or that there wasn't enough sample to catch it but that she did believe I had endometriosis. Slowly I started to have pain come back on that left side. It started on my lower left side and went down my left leg. Over time it has progressed and gotten worse. It now is unbearable some days. It's extreme nerve type pain on the left side. It gets so bad I can't lift my left leg because of how painful it is. My foot gets tingly. My primary care doctor said it sounded like endometriosis was somewhere close to or on a nerve. And she felt like I needed to have a laparoscopy done to check and remove it. She put me on gabapentin and I take ibuprofen daily just to get through the day. It's not cyclical pain. I don't have periods because of the hysterectomy so I can't really track it. It's just daily pain with a huge flare every now and then typically depending on how active I am.

Ok, so there's no "endometriosis specialist* near me. Can't find one. Just OBGYN that also does laparoscopies. I've called, checked, can't find out. I found a Dr 30 minutes from me that's an OB and on her profile it says she has endometriosis herself and treats women with it. She does robot assisted excision surgeries. I figured she was my best bet. I went to her today.

It didn't go exactly how I thought it would. She said she read my file and saw that pathology was negative for endometriosis. And I explained what my previous OB said about pathology and she agreed that does happen. But that she only saw one spot on the uteralsacral ligament and that was 2 years ago so she doesn't think much has changed since then in the short amount of time. I showed her where the left side pain is and how sometimes it feels like it's ripping. She said hmm that's right where your ovary would be, I wonder if it's stuck. I mentioned how my ob found a lot of adhesions during my hysterectomy. And she said yeah that's super common with endometriosis and that's probably what's going on, you have some adhesive around the nerves causing inflammation and nerve pain. Then she said she doesn't think laparoscopy is necessary and that I should just take birth control. I told her how I don't do well with birth control (it causes deep depression, suicidal thoughts). And she continued to push it until my husband spoke up and said I don't think you understand, she wanted to kill herself last time she tried an IUD. Then she said ohhh... Ok we can't have that! Nevermind on birth control. And then said in that case you should do the Orilissa. It's a hormone blocker so no artificial hormones. And it's reversible if it doesn't work out.

I said but if I have a lesion or adhesion pulling the nerve wouldn't it be better to do surgery and free it and then try the hormone blocker? And she said yeah that could be a good idea. Or, there's a chance I go in there and don't find anything or remove some adhesions but that's no cure and it will all grow back so we can skip that step and just go straight to Orilissa.

But I just can't help but think there's no way that's going to fix nerve pain if there's a physical cause for the nerve pain? Am I crazy? Or is that what I should do? She told me to call the office to schedule surgery or ask for the prescription. And that it was up to me. But I don't know what to do.

Had a surgery to remove a 17cm fundal fibroid 4 days ago
Grateful for the recovery going well ..

But so so deeply disturbed by the waiting on biopsy results.

Would love to hear experience of how when anyone heard the results and some reassurance that it’ll be okay

Bit of a history
Ultrasound ( Feb 26) - 11cm
MRI (March 26) - 15 cm
Surgery (May 26) - 17cm

So it seems to be a fast growing one but doctor said it could be a combo on growing plus results actually varying between scans

Has also reassured the mass was quite muscular when she took it out so no bad signs of anything malicious

Anyone else with benign fibroids AND pre breast cancer // breast cancer (invasive or non-invasive)? Do you think they’re related??

I’m 31 and I have an 8cm intramural fibroid and I received benign results from my biopsy (yay!). My periods were not very kind to me (bleeding through ultra-sized tampons in under 30 min, crampy, nausea and migraines, exhaustion and dizziness and some fainting from anemia) … that is until I was prescribed hormonal birth control (combined estrogen and progesterone). I still get lots of dizzy spells, pressure on my bladder, gas, and strong cramping after sex and am lightly bleeding everyday (but improvement? Maybe? I dunno?). Unfortunately, my consultation for a myometcomy is all the way in September (diagnosed about 3 months ago).

At the time of getting that diagnosed, I asked about my breast health after noticing some visual changes and nipple discharge. Got imaging done that led to two biopsies (one core needle on the left and one stereotactic on the right). Left side’s results were sus so I have to get another needle biopsy …. again 🙃 but for my right side, they suspect atypical ductal hyperplasia (precancer, basically small amount of cancer cells but they’re not proliferating like breast cancer). I was advised surgery to remove and biopsy the lumps since there is still a risk of actual breast cancer.

I’m just like wtf is going on? No family history of fibroids or breast cancer. All my hormones are in check expect prolactin (moderately elevated to normal levels). Would love to hear other women’s stories combatting both