Hysterectomy advice - urgent!

[bunnybanana11]

I would like some honesty about the good, bad AND the ugly of having a hysterectomy.

I have some rather large (biggest is 12x8x7) and unwelcome fibroids currently resident in my uterus. Have had a to and from with gynae for the last year (who have been fairly hopeless) and they have concluded that the only possible option is a subtotal hysterectomy, open incision. And I am due to have it next flipping week, hospital called me last week to let me know.

Absolutely panicking now as my symptoms are very minor, heavy periods, occasionally some pain and of course, bit of a bloated stomach. But other than that, I'm ok. They haven't offered me any alternatives, said myomectomy not an option as they will grow back, as these ones seem to have grown fairly rapidly, they weren't there when I had surgery for some dodgy cysts four years ago.

I am 41, one child (primary age), single parent with absolutely no support whatsoever. Going out of my mind with anxiety about how on earth I am going to cope and questioning whether I should even have it, as symptoms not really bothering me badly atm.

Any advice? Recovery times? How horrendous is the actual op? Will I be ok managing by myself? Help!

Why only a subtotal hysterectomy? You’ll still need regular smear tests.

I literally don't know. I feel very ill informed about the whole thing and it's happened very quickly so trying to speak to the gynae clinic who arranged it will be impossible before the op itself 😫

Best thing I ever did.

I’m not sure if this is much help, but I had a subtotal hysterectomy a few years ago for adenomyosis & fibroids. I was mid-30s. I had it laparoscopically though, so no big incision. I was home the same day and carving pumpkins with my kids 2 days later, although taking it easy. I was pleasantly surprised by the recovery, although will reiterate that I had it laparoscopically. I’m 3 years on now, and no regrets at this point.
You’re advised not to lift anything for a week or so, then no moderate lifting for a few weeks - this includes things like lifting a saucepan or hoovering. Depending on how old your child is and how they get to school, you probably could do with some kind of help. Definitely batch cook as much as you can in advance, get a good shop in and thoroughly clean the house.
FWIW there’s some great Facebook groups for hysterectomy ladies that might be worth checking out.

I had a total hysterectomy two weeks ago - and am happy to answer any questions. I had a robotic hysterectomy rather than an abdominal one. Generally, the recovery time for a robotic (or laparoscopic) hysterectomy is quicker than an abdominal one. Still, it is important to take it slow and listen to your body, so you would need to be able to do that. The first week is tricky, so you will need some help and support there with your little one, i.e. taking them to school, help with cooking, bedtimes etc. You are in a certain amount of pain for the first week or so, and it is common to be in the hospital for the first 24 - 48 hours so childcare would be needed there.
Another consideration is whether to keep your ovaries or not. I opted to keep them. If ovaries are removed, you enter into menopause fairly swiftly. I haven't experienced menopausal symptoms post op.

Sorry I can’t advise on the support bit as I had DH looking after the kids. I lay in bed and watched Death in Paradise ad infinitum. I do recall being able to go to the toilet without assistance.

You will have a very thorough pre op and that's a good time to ask any questions OP.

You will need to arrange practical things like getting your child to and from school. If you have no one you can ask to help out then speak to the school first thing Monday and discuss it.

Get yourself a grabber from Amazon, helps if you drop something!

Thank you for sharing, unfortunately the only option is the incision due to size of them. Lucky me. Not.

A friend has offered to have child whilst I am in hospital but other than that I will be on my own. I will see if I can rope a school mum in to do the school run. But realistically I am going to be useless for a good few weeks, aren't I?

Yes, you need to plan for that as you shouldn't lift anything heavier than a kettle for 6 weeks which is going to be hard. The more rest you have the quicker you will heal. Keep up with regular pain killers even if you don't think you need them, keep on top of them.

Oh gosh. I mean, I haven't had much of a chance to prepare, practically, as they only called at the end of last week. Haven't even had the chance to tell work properly yet...

To be honest, it is quite a big operation. I've had a few laparoscopies over the last 20 years and this is something completely different. An open incision makes it more so. You need to be able to rest for as long as your body needs, building in short walks etc over time and not heavy lifting. I'm week 2 or a less invasive procedure and I'm on about 10 mins of walking 2x per day, which makes me feel entirely shattered. My child is older, but I think it would have been difficult when she was younger. It sounds like you might need a bit more time to get things in place childcare-wise - perhaps let the hospital know that? You might have been called in as a cancellation if it's NHS, hence the very quick turnaround but a bit more time to plan it all might be helpful.

I was 50- reasonably fit, sub total hysterectomy like you, with the incision. 3 days in hospital- i was told not to lift a kettle or a teapot or anything for 6 weeks. Noone wsnts to 'pop' anything and have another op. I did take it very carefully for 6 weeks ( strained myself lifting teapot at 5 weeks after the op so took that as a warning) was in fairly good shape by 3 weeks post op but still tired. I would look into a child minder locally if you can, for some half days. How soon is the op? If you're on a waiting list you will have time to arrange more support. ( Freeze meals ahead of your op, you'll be glad you did)

I'm booked in to have a subtotal hysterectomy, with abdominal incision due to large fibroids outside of uterus, this week. Been waiting over a year for a surgery date so I am glad its finally here. I'm keeping my ovaries and cervix as I don't want premature menopause and I feel surgery should be about fixing the problem which is fibroids.

I'm now early 50"s and I had a myomectomy with abdominal incision in my late 30's too which involved same recovery as a hysterectomy. If I'd have known back then that 10 years later fibroids would be back i would have had the hysterectomy then - hindsight is great isn't it!

Whilst I'm not looking forward to the actual surgery I am looking forward to life once the 6-8 weeks recovery is done, knowing I won't have to deal with fibroids issue ever again!

@bunnybanana11 what was the outcome for you in the end? Did you go for the op? I’m having the same treatment as you had - ring you up and say ‘come in next week and have an internal organ removed’ with very little info. I’m terrified.

Hi there, I ended up cancelling it as I wouldn't have been able to manage the after effects. Typically since then, the bloody things have been playing up, so the only other option I have is an embolisation...

But they can only do one. And it will probably grow back... waiting to see when I can get a date for that.

Seeing as they have caused me so many issues since, if I could possibly have the op I would go for it, but at the moment it's impossible.

And yes, agree with the total lack of info actually given regarding the op and the recovery.

Hope it all goes well for you.

@bunnybanana11 thanks for the update. My advice was be to not have the embolisation. I did that last year and the pain was unbelievable. They made it sound like it was going to be a simple ‘non surgical’ option and I would be fine after a week with a couple of paracetamol. I was crawling about on my hands and knees for three weeks in agony as I experienced my fibroids dying in real time. I was on morphine the whole time too, spaced out. And the result was that they did not shrink a bit. So here I am with the hysterectomy option.

Oh Christ, that sounds absolutely horrific! Might have to rethink that one... I was told it would be laparoscopic, an overnight stay with pain relief as there would be 'a bit of pain' whilst they died, and then three weeks recovery? I wish they were honest about these things!

How big are your fibroids if you don't mind me asking?

Guess I'll have to just wait about seven years until dd is capable of looking after herself and getting herself to school etc! But mine just keep growing 😢

I’ve got at least 5 fibroids. The bigger two are 17cm and 12cm. It really was one of the worst experiences of my life and getting follow up care was nigh on impossible. Everyone I know who has had UFE that I’ve spoken to about it said it made no difference to the fibroids.

Oh gosh, I thought mine were bad at 12x11x10 and 9x8x7! You poor thing.

Have you managed to get any more information yet?

I managed to speak to the consultant’s secretary who told me she’s on leave until the day before my operation so I won’t be getting any answers in advance. You’d think I’d not been asking for the last three months or something.