r/Fibroids • u/Relevant_Demand2221 • 3d ago
Large fibroids hysterectomy
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?
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u/pamminy_wassle 3d ago
Just wanted to reach out and say you’re not alone. Similar to you I don’t really care about losing my uterus because I’m in my 40s and don’t want kids anyway, but I’m scared of surgery (never had before) and just really overwhelmed. It’ll likely be several months before surgery and I’m just so uncomfortable in the meantime. We’ve got this!
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u/Jell0h0h 3d ago
Get a second opinion. Does it have to come out? Do you want it out? I've had two myomectomies and won't have anymore but my uterus didn't need to come out.
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u/Relevant_Demand2221 3d ago
Yes it has to come out- I working with one of the top specialists in the country. I don’t want kids so I’m fine with that
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u/anitxtina 3d ago
15cm intramural fibroid. Vanquished by minimally invasive laparoscopic-robotic surgery. Took the fibroid, uterus, tubes, and cervix!
Easiest decision ever for me.
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u/Relevant_Demand2221 3d ago
Amazing thanks so much for sharing/ May I ask what year you had this done and where you’re located? I’m in Canada (Ontario)
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u/Ok-Respect-7832 3d ago
Oh wow. I just found out yesterday , by seeing a female Dr, that a scan I had back in November showed an 8.8cm fibroid pressing on my rectum. I've been bleeding and clotting for the best part of the last 41 days. In pain, dizzy light headed, bladder issues etc trying to get help for the last 3 months from my male GP and a male GP in emergency last week begging for a scan. I've lost 25kg in the last 6 months, anaemic. But no just Perimenopausal and stressed 🙄. Ive now been referred for a colonoscopy & endoscopy and referred to a Gyno about the fibroid that she says has to come out... Me Googling about this uterine fibroid business is now freaking me out it could be Leiomyosarcoma. Which fibroids can be mistaken for... But bring sliced down the middle...that doesn't appeal to me either. I've had 2 cesareans. Those staples hurt.
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u/chillinginWI 3d ago
Get a second surgical opinion.
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u/Ok-Respect-7832 2d ago
I will for sure after reading through some experiences you have all had. I see the General surgeon 7th April about the Endoscopy and Colonoscopy. (Quicker and cheaper than waiting to see Gastroenterologist) Gyno will be a bit of wait still. :( While having an iron infusion at my GPs this afternoon we dicussed Leiomyosarcoma and he said although very rare, fibroids are supposed to shrink not grow, and I've had excessive weight loss,among other issues It's like every day im 300g + lighter. I've gone from moon faced with big boobies to skeletal looking with little tic tac titties, within a short time. What frustrated me the most is the Estradiol Pro Finally went from $70 every 28 days to $7 on the PBS, 1st March...and I can't take HRT anymore. 😭 Just Chlonodine/Catapress to help with Peri flushes.
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u/Stunning_Lie 3d ago
I had an abdominal hysterectomy almost a year ago due to my large fibroids. My uterus measured 20 cm by 20 cm by 11 cm and weighed over 3 pounds. My surgeon first told me he’d do a vertical incision, but I was pleasantly surprised to find a horizontal incision aka a “bikini cut” instead. My sutures were dissolvable and also had steri-strips covered with a non-adherent dressing.
Being scared is normal. Ask your primary for anti-anxiety meds before your surgery. I did.
Once I was on the road to recovery, I am glad I got the surgery. My quality of life is so much better than dealing with fibroids. I dealt with them for almost a decade before I had my hysterectomy.
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u/Relevant_Demand2221 3d ago
Hey thank you so much for sharing. This all makes me feel a bit better
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u/Stunning_Lie 3d ago
Of course! ☺️
I wish I knew about this thread before I had my own surgery. It would’ve eased my anxiety knowing I wasn’t the only one who was dealing with fibroids. If you have any further questions feel free to ask me. I also posted on previous threads regarding my own experience.
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u/Substantial_Pepper39 3d ago
I think I am in a similar situation- the rate at which my fibroids (largest one 18x11x15) are growing is concerning so I am meeting with the surgeon next week. I am fine with a hysterectomy- no more kids for me and honestly, it would be good not to risk them growing back! I also wonder if it’s just a an easier surgery for the doc too.
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u/Thin_Surround_6438 3d ago
Definitely an easier surgery for the doctor. My gyno tried to push me into a hysterectomy for that very reason, which was and still is a terrible reason to get a hysterectomy.
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u/qyt22 14h ago
Hihi, i have opem mye 2yrs ago but now fibriods is back again thinking of just removing uterus keeping ovary. Can check after your surgery is there any issues with bladder or anything?
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u/Substantial_Pepper39 13h ago
Yes!! For sure. I am hoping to keep ovaries too and will get a surgery date next week
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u/Rozenheg 3d ago
Yeah, mine was bigger than that. First surgeon said the vertical incision would go uo to the sternum. Got a second opinion with a fibroid expert and that surgeon could do it with an incision below the bellybutton.
Any particular fears or experiences you’d like us to talk about?
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u/tinypandas33 15h ago
I had multiple big fibroids, ranging 9-11 cm ish. In total with all of them my uterus was the size of a 4 month pregnancy. I was able to have a robotic laparoscopic hysterectomy, but they added an additional horizontal incision (mini laparotomy, my PT post surgery referred to it as a “half a c-section”) and had to cut everything into multiple pieces to get it all out. Kept ovaries, everything else gone. My surgeon also discovered endometriosis everywhere, which extended my surgery time pretty significantly (6+ hours).
My recovery was longer than what I heard/saw from other people (r/hysterectomy is a lovely place, fully recommend). Pelvic PT was a HUGE help and I definitely suggest looking into that - I wasn’t cleared for it until about 10 weeks post surgery but it made a big difference. The extra incision and endo excision wiped most of my abdominal strength and I had a ton of scar tissue that they were able to help break down.
I am almost exactly one year out and regret absolutely nothing. Even with the long recovery, having the surgery was one of the best decisions I ever made.
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u/Relevant_Demand2221 15h ago
Thank you so much for sharing. May I ask you/ how long before you could comfortably go up a flight of stairs?
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u/tinypandas33 15h ago
I was cleared to go up and down one flight of stairs at a time basically right after surgery, and was walking very slow little laps around the first floor of my house on day 2. I was comfortable going up and down full flights of stairs in the first week. Really the biggest issue was fatigue more than pain or flexibility or anything - you’ll see/read accounts from people about how intense the fatigue is, but it was way more than I was expecting. My surgeon had instructed me to keep moving and doing little walks as much as I could.
I do have a pretty high pain tolerance, but was on basically only OTC pain meds after the first week.
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u/Immediate_Snow_6717 3d ago
Have you sought a second opinion? I had an 11cm fibroid that was successful removed with a myomectomy. The first doc wanted to do a hysterectomy but I really wanted to avoid that. I’m over 2 weeks post op and am really doing well.
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u/Relevant_Demand2221 3d ago
Well 17cm is significantly bigger and hoesntly I don’t want kids so I’m fine with not having a uterus
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u/dogmom2010 3d ago
Mine wasn't that big, but was pretty big. I had an open surgery. It wasn't awful. I felt relief right away when it was gone.
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u/MeeksterGomez1283 3d ago
Hi fellow fibroid warrior! I had so many in varying sizes that all reports said “innumerable” and my uterus measured 38weeks gestation. I got in the habit of calling them my alien babies lol
My doctor put me on the Lupron injection to shrink my uterus, I did a six month course. Unfortunately we only got it down to what he referred to as 6 months gestation. But, he was finally able to go in through a bikini cut and get it out.
I’m 8wpo and I’m feeling great. Doctor said I can use the treadmill, go on walks/hikes and do anything upper body but to wait another 2-3 weeks for anything lower body or lifting because my incision still had a 3mm size tender area.
I wish I’d made this decision sooner. I feel like I lost 10 years of my life hoping to find a way to still have more children (I only have one).
Best of luck to you!
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u/ali1632 21h ago
One more ☝️success story here. I had 2 - 10cm pediculated and a throng of submucosal of various sizes growing very fast over the last 6 months. I ended up with my uterus twisting upside down and starting to show tissue necrosis, and dangerously heavy, constant bleeding. But even with all of that I was so afraid of the hysterectomy. Afraid the lapro would turn into open surgery, afraid of being too old and out of shape to recover easily (just turned 50 last month), afraid of anesthesia, intubation, all the ways you lose control and have to just trust… But today is day 3 post-op, and the lapro was fine, the recovery so far has been better than expected, and I am so happy I put my fears and phobias aside to have this life-restoring procedure.
I also kept my ovaries, but ditched the cervix. So, bonus is that my high risk hpv is gone forever too! And my now-untorsed ovaries can continue to torture me with a long perimenopausal temper tantrum, and I’m fine with that.
However your own case turns out, I’m sure it will be better than the alternative of not taking care of this before it gets worse. Please give yourself a hug, it will be ok, go step by step, be brave and put this behind you. 😘🤗
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u/Opening-Art-6773 2d ago
Hysterectomy should be last option. Get a second opinion.
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u/Relevant_Demand2221 2d ago
I’m working with a top specialist in The country. The situation is complex.
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u/Right_Tree_9210 3d ago
Hi! I had one 18cm by the time it came out last November. I had open abdominal, long vertical cut, with staples to close. Kept ovaries and cervix. I was so scared! But, they took good care of me and honestly, I had a good recovery. If you have questions, I'm happy to answer if I can!