Large fibroid… what now?

[TulipNoodle]

Hey all. I’ve recently found out via ultrasound that I have a large fundal fibroid - just over 10cm. Am waiting for a follow up appt with the GP but from everything I can see online, surgery feels likely. I have incredibly heavy periods where I need at least 2-3 forms of protection, I’m anaemic, I have a lot of pain, and some mid-cycle bleeding.

Im in my early 40s and finished having kids. Has anyone been in a similar situation and did you end up having either fibroid removal or a hysterectomy? Thanks!

@ShowOfHands that sounds so rough. Fingers crossed you get a date soon, and some clarity on what they will actually do.

Where I live this would be a hysterectomy and nothing else offered. If you are past 43/44 you're unlikely to have a(nother) child so they will not do an operation to remove just the fibroid.

Mine are medium-sized so I'm avoiding the operation for the moment and the medication they've mentioned seem horrendous too.

I had this done too, about 8 years ago. 1 large fibroid blocked off by beads in a single artery. Total success. Only regret is I should have done it sooner. The pain after the procedure is astronomical though!

Yes, everything was morcellated (?sp) which is something I have avoided thinking about pre or post op in any detail. My op ended up being very long as well due to the size of my uterus, apparently it filled all available space making skirting round laparoscopically tough going. Very pleased my surgeon stuck with it. I chose him for his surgical skill not bedside manner (which was appalling but I didn't need kind words just skilful cutting 😆).

I have had a very VERY poor spine since my teens which I keep going with lots of weights/core work so I think my obsession with core/pelvic floor lead me into very different research to most and also I am NHS so was aware of the prolapse possibility BUT it is rare indeed. Still I have far too many physio friends not to pass on the pelvic floor exercise message at every opportunity!

Ha, yeah it’s not an appealing thought is it? Interesting though, mine is not especially large but seems that is not on the table
for me. I will ask though (on the day I guess!)

I’ve done a lot of reading, systematic reviews etc and for me (no children) prolapse risk seems very low so trade off is perhaps the reduced risk of cervical cancer, and more immediately not having to recover from a larger incision. However I’m a big fan of pelvic floor exercises anyway and will continue.

I’ve got a large fibroid (around 10cm) and causing bleeding every day but no other systems and I’ve been offered a hysterectomy. Not sure if this is a bit extreme. I’ve already had a surgery to remove the fibroids and this is one that has grown back since the surgery. I’m mid 40s, no children and no plans to have any. Not sure what to do really!

I found that my gynaecologist was more than happy to answer questions. I used to email a list of detailed questions to his secretary and he'd ring back with answers. Could you email and ask the rationale for hysterectomy, other treatment options, risks for and against and so on.

I too had fibroids but dozens of them and was bleeding horrifically and in terrible pain. For me, the answer was clear but even if hysterectomy was the clear option, they did give alternative procedures for me to consider as well.

Same here, around 7cm, doctor not interested at all, told it will shrink approaching menopause, well its still here. I used to need to wee all the time and nearly wet myself a lot, that has lessened off so I can only assume it has got a bit smaller, it was pressing on my bladder. Last had it scanned about 18 months ago.

They're not that interested in doing anything I find

I had fibroids inside and outside my uterus so large you could actually see the lump (I was very slim). I had a hysterectomy at 46 and it improved my life dramatically.

Thank you. A hysterectomy just seems a bit extreme to me but maybe I’d feel differently if I was in pain with the fibroids.

That’s terrible that you have just been left to get on with it. I’m not in the UK so I suspect that’s why it’s been investigated now rather than having been fobbed off for years before.

I had a uterine artery embolization in 2017. It was pretty brutal. I was incredibly sick from the morphine and booted out of hospital whilst still feeling very ill. I had nobody at home to care for me so had to manage by myself. The fibroids are now back and I've been told to go away until it gets much worse. I wish I'd opted for a hysterectomy. I'm 63 btw.

I had a huge fibroid. I can't remember how many cms but it was the size of a 7 month foetus. I'm overweight and my weight goes round my stomach so it got lost in there.

Funnily enough I didn't get any menstrual symptoms until the diagnosis was made. However after that they came out in force. I was having to take time off work since and hadn't had to take time off sick with them in nearly 40 years of having periods.

However, we never had kids despite not using contraception for years. We wanted kids and when they happened went to the GP and had tests at that level. He came back with low sperm count, I only had bloods and they were ok
For a number of reasons we decided against taking it further. Now I wonder if I'd taken it further would it be treated differently and I could have kids as gynae said it would have been there years
But because my periods at the time were ok and the bloods were ok I assumed things were fine my end

The reason I sought help was because I was getting issues with my bowel and bladder. Different doctors have told me different things whether this was the cause, but I do think the fibroid was so large it was pressing on other organs.

I had it done abdominally 10 years ago.
They were considering doing it vertically because of the side of the fibroid .
This is more difficult to heal as the wounds are going at right angles to the muscles, but in the end they did it horizontally. They removed my ureris and cervix but left ovarirs and fallopian tubes.

I was 49 when I had it done so had accepted kids weren't going to happen. Strangely it made it easier to accept as it was obviously final.

My menstrual symptoms obviously resolved well , but the others only improved for a while for a while, but are now back to a degree so I wonder if it was really worth it.🥴 However I wouldn't have known if I hadn't had the operation.

When the kids DIDN'T happen, unable to edit x

"I was having to take time off work since and hadn't had to take time off sick with them in nearly 40 years of having periods."

Yes, but you didn't have fibroids all that time. They usually appear as a woman gets older, but still in her reproductive years.

You should complain about that doctor.

But you're bleeding EVERY day?

No I know. When you say it back to me, it’s absurd.

Things I have tried: Coil - constant bleeding, then came out. GnRH - fabulous, but can only stay on for a year. Uterine Embolization - in pain for several weeks, then after 3 months the bleeding came back with a bang. Ended up in a&e with chest pain - my iron levels were so low I needed 2 blood transfusions. Now back on GnRH while I wait for a straight fibroid removal (also on the urgent list, 6 months and counting). Hysterectomy is a last resort due to other complications, so I am very very grateful the GnRH is working. There are a number of options, so a lot to weigh up. For me, if the next op doesn't work, I'm running out of options, which is nerve-wracking.

I had several large fibroids and was told they would shrink once menopause. I didn't want surgery myself. Now few years later my periods are so much lighter and short.

That’s terrible!! The things we have to put up with!

I’m now 6 weeks post-subtotal hysterectomy. I had a small incision to remove the uterus, and I can reassure anyone facing hysterectomy that it’s not as horrifying as you might imagine. I’m fortunate to have been able to take 6 weeks off work, combining sick leave and holiday to remain on full pay. Pain was minimal, only had paracetamol for 48 hours, driving after 2 weeks, I haven’t done any heavy lifting yet but I’m back to doing normal daily tasks, bar cleaning floors, and feel much better than I did before. No more incontinence underwear to contain the bleeding, no more having to nap in the day, no more blood transfusions or codeine for the pain, or hormone suppression. It’s not a minor operation but if it’s the right thing for you, do it.

I asked my consultant how long it had been there. She said 'probably since you started your periods.' Obviously not as large, but always there. And yet my periods were only giving me difficulty AFTER the diagnosis! I just think it was weird that of I hadn't had the difficulty with bladder and bowel issues I wouldn't have gone for help and wouldn't have had the scan which diagnosed it.

I'm not saying you should have a hysterectomy necessarily, but something should be done.

"She said 'probably since you started your periods.' "

Oh wow. I thought they appeared in our 40s and potentially in our 30s. Had no idea they appeared at puberty. I suppose they grow though...