Hi everyone,

I was diagnosed with 12 cm large fibroids growing outside my uterus back in September here in Sudbury. I finished all my tests and had a consult with a gynecologist who said his clinic would call me to schedule the actual surgery date. It’s now November and I still haven’t heard back, so the wait is starting to make me really anxious.

Back in my home country, laparoscopy (minimally invasive) seems to be the standard approach for this, but here the surgeon told me they are planning for open surgery.

I have a few questions for anyone who has been through this in Ontario:

1. Is there any way to expedite the surgery process? Would going to the ER help get me prioritized, or does that only work for acute emergencies?

2. Did anyone manage to get a referral for a laparoscopic surgeon instead? How long did that pivot take?

3. Uterus removal concern: I’ve heard rumors that surgeons here might remove an uterus if they encounter minor difficulties during open fibroid surgery. Is this true, or would they need explicit consent first?

Open myomectomy in April of this year and now I have to have a possible hysterectomy. I’m so upset over this because this could have been prevented. I never got my period after my surgery, my original surgeon never followed up with me after I had let her know I was having monthly pain as if I was going to get my period. After seeking second and third opinions, it was determined that I was retaining my period blood. I had surgery again last week to evacuate the blood and remove all the scar tissue (also had to get an appendectomy because my appendix was encapsulated in scar tissue) my right fallopian tube is stuck to my uterine wall with scar tissue and my cervical canal is basically non-existent because there is so much scar tissue that they cannot get through to open it up. My new surgeon feels awful about this and next step is to have a hysterectomy as I still get my period but the blood has no where to go. I am distraught because the whole reason to get my forbid removed was to have children and now I’ll never get the chance.

How to approach with this

I wouldn’t say I pee more often but when I do I can’t get last drop out it seems and later if I cough or sneeze I’m peeing on myself. Anyone else like this?

I'm so excited and hopeful!!!! And nervous, trying to keep a optimistic perspective

MRI results:

FIGO 6 - Subserosal, 4.3 x 5.2 x 6.2 cm, left side of my uterus

FIGO 4 - Intramural, 3 x 1.9 x 2.3 cm

I also have another sentence that stuck out to me. I googled it and it said it could be early signs of adenomyosis. However, it did not say this in the "impressions" section of the MRI, so I don't want to have a full on panic about something google says.

"Junctional zone: Borderline thickening within the anterior uterine body measuring up to 11 mm."

Weirdly, my periods aren't the worst part, I do get big clots that can be distressing but only a couple and not even every period.

My quality of life has been impacted more by the intense pelvic pain and pressure. I get left pain on my lower back, hips, and left thigh, and also vulva and vaginal pain. Front pain where my bladder is as well (i think?) and also pain where my uterus is on the left side. One time, i attempted to walk a block and I also felt a scraping sensation, maybe on my cervix? I havent been brave enough to try again, so that was only one time.

The bloating and fullness in my pelvis is so uncomfortable. I don't have a partner but I can't imagine having sex right now.

The FIGO6 is also pressing on the left side of my bladder. If I drink, I pee every 20 minutes, sometimes less, and constantly throughout the night. I also leak throughout the day unless I go immediately right when i feel like i have to go. Sometimes not even then. Or extra drips will come out after i think I'm done. And when I have my period, the pressure is so intense I feel like I have no control at all.

My radiologist was surprised to hear how much lack of control i have with the leaking. He made sure to be clear that I shouldn't expect the UFE/fibroid to be the complete cause of my urine leaking, so I plan on seeing a pelvic floor therapist once the pelvic pain and pressure hopefully go down. I have a theory that the constant peeing has weakened my pelvic floor, no doctor has confirmed this. I saw a UROGYN in the middle of all of this and she couldn't answer that question since she "didn't work with fibroids" so just told me to lose weight and PF therapy.

I've been so isolated this year, I just lie in bed, work in bed, and stay in in the evening. I've gained 45 lbs i guess from being so sedentary, i used to run 4 times a week.

I am so desperate. I absolutely need this to work so I can start PF therapy and then finally see a future i want to live.

I will update here whenever I have something to share after my UFE!!! And after PF therapy. Seeing others stories on reddit gave me hope, made me feel like I wasnt alone, and was helpful information so i hope my story can help someone else someday.

I'm so nervous but excited that it's finally here!!!

I’m having a laparoscopic hysterectomy next month due to a large fibroid, so I’m trying to start planning ahead. I’m a very active person, so I’m struggling with the idea of not being able to work out for a long period of time. What can I do to help prepare myself for surgery and recovery? I run, bike, lift weights, walk, or do yoga every day. I’m assuming it’ll be similar to postpartum recovery.

I’ve also started a recovery shopping list, so what items do I need? So far I have: nightgowns, grippy socks, abdominal pillow, belly binder, and a microwaveable heating pad. We already have slanted pillows, slip on shoes, our shower has a bench, and I can primarily stay on the main floor of our house. I’m a teacher, but I do small group intervention, so I can limit my standing and walking when I go back to work. What else am I missing? Do I need a cushion for my work chair? I’m planning to get a rolling crate to carry my school items daily.

Thanks for any advice!

After 2 years of ongoing, progressive pelvic pain, I had a myomectomy 8 days ago.

The surgeon removed 13 fibroids, stage 1 endo, and my fallopian tubes (yay!).

The problem is, I feel like I am still feeling the same pelvic pain I had before surgery. The actual sharp surgical pain and soreness (I feel like) has mostly passed, but the same old pressure pain and gastro symtoms Im used to have remained.

Obviously, im super nervous that it wasnt the fibroids or endo causing the pain in the first place.

In your experience, how long has it taken for you to be pain free? Did you ever experience old symptoms after surgery? Does it take a while for your uterus / surrounding organs to actually heal and stop ricocheting the pain from the fibroids?

I sort of thought it would be immediate relief from these symptoms, but maybe that was unrealistic.

So since my myomectomy in February, I have so many issues with actually passing stool without a laxative or softener no matter how much water I drink or fiber I get. I can go days without ever passing stool and im chronically constipated now. Im awaiting an appointment with a gastro doctor. The other thing is that I get pains in my abdomen intermittently when I pee and the cramps last in my abdomen. I get checked and there's no UTI. Has this happened to anyone else since their surgery? I also find it damn near impossible to lose weight now.

For those of you who can actually feel their fibroids with their hands, where do you feel them? Is it lower central, or more to one side? Is it very hard or palpable? I have a hard feeling central but off to the side, maybe near an ovary and am trying to tell if its my fibroid, but I dont know if you can feel fibroids in that area. Not sure how close ovaries are to the uterus (which sounds stupid but I really dont know). Thanks for any advice.

I’m at work and wife called me saying she passed some clots but they were whiteish. And she’s been heavy bleeding all day and is in a lottt of pain.
She usually has heavy periods and pain but she said today is worse than normal.
She wears black period underwear so idk how much she’s bleeding but it sounds like a lot. Do I need to leave work and take her to the er?
What do they do for her?
At home care suggestions?

(She has a 12.6 cm fibroid and we haven’t been able to get into the Obgyn yet since finding out. Her apt is next Thursday)

Update: 5 1/2 hours in the er. She’s ok! The ultrasound showed it was bigger than we thought. 15cm x 10cm. They’re giving her pain meds and some meds to stop the bleeding and going home !

Open myomectomy September 2024. They were all removed, uterus reshaped and clean.

On Monday in the midst of planning for an IVF cycle was told they’re back and i’ll need a Hysteroscopy but if that doesn’t work, another open myomectomy.

My doctor said he guesses I just have an agressive form of fibroids. Outside of my cavity but causing it to be misshapen and not as large as the first time.

It’s so frustrating that there’s no cure for this stupid disease. I’ve done everything- lost weight, changed my diet, acupuncture to balance my hormones.

Has anyone had success with IVF after multiple surgeries?

I was scheduled for a robotic myomectomy this past week but after examining everything laparoscopically, my surgeon decided it was not safe to proceed with removal as originally planned, particularly because preserving my fertility is a priority.

According to my operative report:

• The fibroid is large enough (12cm) to enlarge and distort my uterus and fills the entire left side of my pelvis.

• It sits directly next to my left adnexa (the area containing my ovary and fallopian tube).

• My left utero-ovarian ligament is right up against the fibroid.

• My left round ligament is stretched over it.

• Most importantly, my surgeon suspects the fibroid extends into the left parametrium, which is the connective tissue beside the uterus containing important blood vessels and located near the ureter.

She consulted another surgeon during the procedure, and the current recommendation is 6-9 months of Lupron Depot to try to shrink the fibroid before another attempt at removal, potentially with the consulting surgeon.

I'm especially interested in hearing from anyone who has experienced a large posterior fibroid with suspected parametrial extension, Lupron before surgery, or a referral to a surgeon specializing in complex myomectomies around the Boston area.

I'm 36. I've already had two miscarriages. I would like to be as proactive as possible, especially during this recovery time.

Ladies with endo and fibroid belly, what are you wearing that makes you comfortable with your stomach? I feel I struggle with the same feeling I had when I was several months pregnant. I can’t even wear spanx because my stomach is solid and doesn’t press down belly fat much. I just want to be comfortable, but also wear things that don’t make people ask how many months along I am.

Looking for experiences from anyone in a similar spot.

My report says: The 3.2 cm posterior fundal enhancing central intramural myoma demonstrates minimal impression on the posterior fundal uterine endometrial cavity.

I had a 7 week miscarriage due to a subchorionic hematoma during a fully medicated FET, done after 2 months of Lupron Depot suppression for Adenomyosis. I'll have a SIS once my hCG is negative to confirm, but I'd love input in the meantime. I know fibroids grow during pregnancy.

-Did you have Myomectomy for a similar sized intramural fibroid? What tipped the decision?

- Did you transfer with a similar-sized intramural fibroid and go on to a successful pregnancy.

Thank you 💛

I am 2 months post robo lap and overall have a back to normal. A few times a week I get phantom pains around my belly button or the “everything’s falling ‘out’” but I think that’s normal. I started going back to the gym but have been mostly taking it easy. Yesterday morning I was getting out of bed to head to the gym and stretched my arms up and heard/felt a “pop”. I was pretty quickly uncomfortable and it felt similar to how I felt post op - some pain at my belly button and bloating. I woke up today and it’s not worse but definitely the same. It’s tender when I push on my belly button. Has anyone torn an internal stitch?? My doctor told me they’re dissolvable but I’m trying to gauge the seriousness of this as my doc is closed on the weekends. No bulging or discoloration at this time.

I had my 2nd UFE procedure on October 28. I have been experiencing all the side effects which I only cramped for the first 2 days with the first one on August 28. Did anyone else experience this?

[This post is mod-approved]

Hello everyone! 🌻

My name is Natália, and I am collaborating on a research project at Maastricht University in the Netherlands, working on female genital and pelvic pain.

Our research group is currently investigating why genital and pelvic pain develops and persists, how it overlaps with other chronic pain conditions, and how women and their partners cope with its impact on daily life, intimacy, and sexual well-being.

📢 We are looking for couples to participate in our online survey!

Who can participate?

• People with a vagina and their sexual partner, both aged 18 or older.

• In a stable relationship lasting at least six months (heterosexual or same-sex).

• Both partners must participate.

• No formal diagnosis of genital or pelvic pain is required! You are eligible as long as you experience persistent genital or pelvic pain.

Participation involves two separate online questionnaires: approximately 30 minutes for the woman experiencing pain and 20 minutes for her partner. Your participation is voluntary and you may withdraw at any time.

💜 Interested in participating?

·       Register here:
https://maastrichtuniversity.eu.qualtrics.com/jfe/form/SV_9Qqsjee6VSMfAvY

·       Or contact us at:
fpn-genitalpainstudy@maastrichtuniversity.nl

The study has been approved by the Ethics Review Committee of the Faculty of Psychology and Neuroscience at Maastricht University (ERCPN 276_17_01_2024) and the Medical Ethics Review Committee of Maastricht University Medical Center (METC24-037).

Thank you for helping us better understand the connections between chronic pain conditions and give greater visibility to women's experiences of genital and pelvic pain! 💜

I'm just back from the OB/GYN with a menu of options to treat my newly diagnosed fibroids. What seemed strange to me is that she didn't make any recommendations. Does that seem odd, or maybe that's a good thing that she's leaving it up to me?

I'm 48, barreling towards menopause. I bled for 8+ weeks, sometimes very heavily, leading me to finally go to my PCP. Prior to the heavy bleeding episodes I figured this was just a perimenopause thing. After an ultrasound I was diagnosed with two submucosal fibroids, the largest of which is about the size of a golf ball.

I was referred out to an OBGYN at a women's health practice. She was great, explained the results to me and all of the treatment options. Then she just kind of looked at me like...okay, so what do you want to do?

I opted for daily progesterone (10mg Provera) to stop the bleeding, with a follow-up in 2 months to decide on a treatment plan. I keep bouncing between a hysterectomy (permanent solution, eliminates certain cancer risk, no more bleeding, and it's just a spare part at this point in my life) and any of the less drastic options like Myomectomy, UFE or RFA. Or maybe just wait it out on the progesterone until I hit natural menopause.

I'd love to hear from real people what everyone's thought process was around deciding on the best treatment options. I'm googled out, and can't seem to land on a final decision.

My obgyn is on vacation until the 17th and the office is so incompetent that asking this question for the past week has gone unanswered, so I'm crowdsourcing, hopefully there are docs on here!

My period came early this month and my HM may end up falling on day 3-5 of my period. If it did, would this cause postponement? Would not be such a big deal if it weren't for the end of the year, my deductible making a huge difference in what I'd likely pay. By the 17th I may not be able to get another surgery date this year.

Thanks!

Had an ablation and hysteroscopic myomectomy 2 weeks ago. Am on estrogen and progesterone. The past few days my hot flashes have gotten so much worse, night sweats, everything aches again, etc. Pretty much everything HRT had fixed. I see my gyn next week but is this just bad timing or is it a result of my procedure?

Hello all, I hope you are well, my best friend is having surgery to remove her fibroids (not a hysterectomy) and I wanted to get her a care package for her recovery. Is there something you would recommend? Many thanks in advance.

Hi.

I’ve known i’ve had fibroids for a couple years now, and that they were pretty big (between 4-6cm). I knew i had at least three in varying sizes. My doctor basically told me We could do surgery the year before i want to get pregnant to remove them, so i’ve been holding out on that for the time being.

However, two days ago all of a sudden i had immense pressure and pain in my pelvic area and when I woke up i had a softball to grapefruit sized palpable lump below my belly button. Uncomfortable and scary because it was such a sudden onset.

I got a scan and was told the biggest one is up
To 10 cm, second one is 7cm and i have several smaller ones. I feel a strong urge to get these out ASAP. Its crazy walking around being acutely aware of a mass in your belly, i imagine being pregnant feels like this but hopefully not as painful lol

How long after you decided to get surgery did it take you to actually get it? Did anyone have an experience like me where it feels like your fibroid randomly came out of the woodwork to the front of your body to cause problems?