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!

I had a hysterectomy. Similar story to you. Massive fibroid (I had gained a stone in weight) and horrendous bleeding. Absolutely hands down the best thing I ever did. Recovery is hellish but worth it.

I don’t know the pros and cons of hysterectomy vs fibroid removal, I was just given hysterectomy as an option and I grabbed it with both hands.

I'm just doing searches as I recover from my hysterectomy for fibroids 4 days ago. I don't know the final size (I had 2) but my uterus had grown to appx 20cm with them. Bleeding 3 weeks out of 4, uncomfortable, painful sex etc. I had open abdominal surgery due to the size, all out except my ovaries. I was on hrt (which was making them grow) so I continue with estrogen.

I would take the definitive solution if I were you. It solves so many issues and potential issues. It's a major op, so not to be underestimated but I'm so glad I no longer will have periods! X

My friend recently had a hysterectomy as a consequence of a fibroid ablation which sejt the fibroid into an awful shrink - grow - outgrow boood supply - shrink again cycle which gave her awful symptoms and hospitalised her at one point with a pseudo infection.

She was told the hysterectomy was much more complex and high risk due to the after effects of the ablation, and in retrospect she should had all the explained to her before the ablation, in which case she'd have gone straight for the hysterectomy.

Ask your Dr about this OP. Thankfully my friend is OK, but if you don't need your womb for anything then might be worth just going straight for the bigger op

Ask about uterine artery embolisation.
Minimally invasive with quick recovery.

https://www.guysandstthomas.nhs.uk/health-information/fibroid-embolisation

That is exactly what my friend had and it was quick recovery then a full year of the fibroid yo yoing between big and small, the the hysterectomy which snuck more complex than it would have been otherwise and considerably higher risk for all sorts of complications. Lucily she is fine.

Please ask about post embolisation risks before deciding. My friend wasn't told anything. Hey hysterectomy surgeon waa horrified she was so uninformed

I can't remember the exact figure our specialist quotes , but he does stress it doesn't work for everyone.

AI overview:

AI Overview

Uterine artery embolization (UAE) for fibroids has a high clinical success rate of 85–95%, with over 90% of patients experiencing significant relief from heavy bleeding and 70–90% reporting reduction in bulk symptoms. The procedure reduces fibroid volume by 50–60%, with a 10-20% re-intervention rate within five years.

I had a large fibroid diagnosed over 10 years ago aged 40. I was given the common line of ‘it’ll shrink when you reach menopause’, so wait and see. It caused me a lot of pain (abdominal and lower back) heavy bleeding, anaemia over the years and in the end I asked for a hysterectomy. I had to wait over a year for that, but just over a year down the line, my quality of life is soooooo much better now.

I’ve recently had an ultrasound where a number of fibroids were discovered too. One is up to 6cm. It doesn’t cause me heavy periods but it does make me need a wee very frequently, mainly at night. I’m getting up every 2 hours, it’s so annoying. Been referred to a gynaecologist and they may suggest surgery. I’m just not sure it seems worth it considering my only symptom is increased peeing at night. @TulipNoodle did you have any increase in peeing? Apparently it’s cos they can press on your bladder depending on where they are

I did and had a hysterectomy. Mine was bigger than yours, it was a full open procedure rather than keyhole. There were other options, but that worked out the best for me.

You must do something though, the blood loss was awful and it made me very unwell.

Mine took up my entire womb, I just had it removed, took about 40 minutes. Never been offered a hysterectomy, not sure I'd want one unless it keeps coming back. I felt 100% better the day after removal. Had been bleeding 24/7 for over a year, had continuous womb pain and looked pregnant. I'm surprised at women being offered hysterectomy in the first instance, it's a major op.

I was told on diagnosis that mine was too big for a myomectomy (removal of fibroid only). The embolisation method was mentioned, but I didn’t like the sound of the the possible side effects/later problems.

I have had the fibroid embolisation 2 years ago and it was a perfect success. It is suitable when it’s a single large fibroid. In hospital for 1 night, back on my feet in 3 days. Non invasive, only small cut where they went in to do the procedure. No stitches, no general anaesthesia. Took 6 months for the fibroid to shrink from 10cm to 4cm. All fibroid problems have gone away. I would recommend, but suggest that you investigate all options thoroughly before you proceed.

I’ve just seen your thread @TulipNoodle , I also have a fundal submucosal fibroid, though smaller than yours. I have been unable to have children because of it and so tried fertility preservation first. I had a partial hysteroscopic resection but that was unsuccessful. It was more than 50% into the uterine wall, and the pain following the resection was even worse. I then had a stroke so was unable to have further resection surgery until the cause of the stroke was resolved.

In the meantime, I had GnRH for almost three years but paused them to see if ‘aged out’ of symptoms. Sadly not, and now I’m back on them but with limited effectiveness, and now take daily norethisterone with also limited success. The fibroid and my age are now barriers to fertility, and I will have a total laparoscopic hysterectomy in 2 weeks. I was a candidate for embolisation but I can’t face the possibility of it not working, and I discussed myomectomy but the location and type mean it would need to be open and there’s a risk of needing hysterectomy anyway, so I’m going for the radical option. The bleeding, side effects of all the hormones and drugs and impact on my ability to sleep and exercise mean, for me, I’d rather get it done while I’m relatively healthy than wait and keep having procedures only to end up in the same place, but less strong.

It’s worth exploring all options, I’ve got a consultant who I really trust, and who is a menstrual disorder specialist. I feel she’s given me every chance but it hasn’t worked out as I hoped and now I’m going to do what’s best for my quality of life.

I'm in a very similar boat to you @Allisnotlost1 . I have been bleeding daily and in pain for 13 months, and 12 day long periods for 18 months before that. I am on GnRH injections and take daily norethisterone but still bleed most days and am in constant pain.

I have a large subserosal fibroid, 2 medium submucosal fibroids and dozens of intramural fibroids.

I can't sleep or exercise or have any form of life. I am just praying for surgery. I'm on the urgent list but no idea when it will happen.

This was me. My fibroids were such that ablation wasn’t an option. I am so very grateful that I had a hysterectomy, my quality of life has improved no end.

Another vote for uterine arterial embolisation. Had it for my 10cm fibroid 2 years ago. Shrank it substantially. Someone mentioned side effects - no idea what these are! I didn't experience any

I have 5 fibroids, the biggest was 9cm and smallest is 4cm. I had a fibroidectomy via hysteroscopy under GA and had a Merina coil fitted at the same time. My biggest fibroid has grown back and doubled in size to 18cm in 18months! I’ve been on the w/l for a hysterectomy for 10months.

I'm 5 weeks post op hysterectomy for mine. Apart from the first 24 hours (OUCH!) recovery has been absolutely fine (actually quite nice to have the excuse to step of the middle aged sandwich woman treadmill). Having time before the op meant I could make sure I was as fit as possible and eat well etc and I have to say I feel great and very relieved to have the whole fibroid thing behind me. I kept my cervix and ovaries and have been doing pelvic floor exercises like mad pre and pot op and all seems well!

So sorry to hear this @ShowOfHands . Have you looked into Right to Choose to see if there is an area with a shorter waiting time?

My consultant was proactive and asked for me to be expedited, and I was offered a date the next day, for 3 weeks later. If you haven’t already it might be worth contacting your consultant? For me the combo of GnRH and Prostap is quite hard (no doubt same for you) and if you’re still bleeding you must be anaemic. Is there a gynae clinic you can keep attending and making a nuisance of yourself?

Thank you for sharing, glad you’re doing well. Can I ask what made you decide to keep your cervix and how the recovery was with the incision?

Hi @Allisnotlost1 , I was thinking about future me (hopefully 80 year old me if I'm lucky) and my pelvic floor. I believe leaving the cervix in place gives you a better base to stop your intestines sliding out for freedom as you age (prolapse). Downside is you need to continue with smear testing on your usual schedule but that didn't bother me. The four laparoscopic incisions have healed beautifully, I ate lots of protein, vitamin c rich food and fibre pre and post op which I believe helps with healing (and keeping bowels moving, I would HATE to think what my first poo would have been like constipated 😬). Also do your pelvic floor exercises people, every day, it's essential.

Thank you for replying. My surgeon said she’d need to do a 5cm incision to remove the uterus, which is what is putting me off. Assume yours was morcellated? (What a weird question!)

I do have concerns about the pelvic floor, though from what I have read the evidence is mixed. I have 4 days to decide!

Glad to hear you’ve healed well. I’ve also been eating plenty of fibre and protein in preparation, trying to get plenty of sleep but failing, keep dreaming about it!

Oh good grief, thank you for this @IHateAlzheimersam frantically pelvic flooring here while waiting for the oven to heat up for the children’s supper! My cervix was removed and I was not told about the possible risk of my innards wanting to escape in the fullness of time 😭 My (female) surgeon was quite wanting to remove as much as possible, I had to fight to keep my ovaries, I could tell she thought I was silly to want to retain them, so the rest I just agreed to as I was so focused on not going straight into surgical menopause.

Mine was morcellated, the joys. It was not planned but it had to be as it was far bigger than the surgeon had anticipated. The surgeon told me she was determined not to convert to an open surgery but that it took so long laparoscopically (a good few hours) that unfortunately the lady who was meant to be immediately after me had hers cancelled. I feel dreadful to this day about that.

I'm very anaemic and had an infusion on Thursday (plus an allergic reaction to it so feel worse now than before it!). Ironically, I'm not fit for surgery as my BP is so high and my iron so low.

My gynaecologist says there is nothing he can do to speed things up and I've been trying to ring the waiting list coordinator for an update but they don't answer or respond to messages.

It's a miserable limbo but I've been on the urgent list for 17 weeks and they told me that they hope it will be done before the end of July. Waiting lists elsewhere are just as bad and they can't offer anything else via Right to Choose.

My consultant said that on balance, keeping my cervix will be the right choice to prevent a prolapse as far as possible. And after a year of utter misery, I don't want to end up with another problem to deal with. I researched it as well and can't find any good reasons to lose my cervix and several reasons to keep it.

I am really hoping for laparoscopic surgery as well but at my last scan in January, the fibroids and my uterus were deemed too big. I've no idea if the Zoladex is shrinking everything as hoped so they'll try laparoscopic on the day and change to open if necessary. I don't even know what surgery/recovery I'm prepping for.