Urgent hysterectomy (in shock)

[Lovemusic82]

I was booked in for a hysteroscopy today, waited 6 months after being told I would have to wait 2 months. I have had ongoing issues for years with heavy bleeding, pelvic pain and spotting after sex. I had an ablation 2 years ago which was not successful, have had several internal scans since which showed nothing more than a couple tiny fibroids. Was told I could go in the list for a vaginal hysterectomy but would need a hysteroscopy and biopsy first (which was todays appointment). Expected things to go smoothly (have had one before). I had local anaesthetic then they attempted to insert the camera but couldn’t get through my cervix so had to stop, I then had an internal examination and lots of pushing and prodding, was told my uterus was enlarged and the gynaecologist looked worried. I was told to get dressed and take a seat in the consultation room. I was told I need an hysterectomy as soon as possible and would be out top of the list and that it would be open surgery as my uterus was too large to be removed by vaginal surgery. I was made to sign consent forms and sent home.
5 minutes after getting home I had a call to book my surgery (4 weeks time) and pre op.

I’m in total shock as I was expecting to have the surgery next year and to have it vaginally. I am a single parent to a disabled teen/adult so i am not panicking trying to organise care for her and mentally prepare her for me being in hospital for 2-3 days. gynaecologist said “surgery can’t wait, needs to be done ASAP” but didn’t explain why so of course I am now panicking and google doesn’t help 😬.

Has anyone else been through similar and it’s all turned out ok? I know there’s a chance it could be cancer but also a chance it’s just fibroids or Adenomyosis?

How long should I expect recovery to take? How long before I can drive? I am reasonably fit, 42 years old.

My major concern would be that if you go in with all this evidence that the surgery isn't as urgent as they suggested, they'll likely agree with you and stick you on the waiting list for the keyhole option.

I don't think you were wrong to source answers or to highlight errors but I do worry that you're not actually doing yourself a favour in terms of getting the surgery that by the sounds of it, you desperately want.

If the option was abdominal surgery in 2 weeks or keyhole in 2 years, what would you choose?

I had an abdominal hysterectomy over 25 years ago and was in for 5 days, and off work for 8 weeks.

You've had lots of helpful advice here, so I will just add one other thing. Before I went in, my best friend (who'd also had the op) told me that a woman on her ward told her - when you get up for the first time, when you start standing up - don't hunch over as if to 'protect' the wound, it's best to stand straight up right away.

She was on a big ward and she saw so many women hunched over, shuffling, and apparently it's not good for the recovery of the incision area.

She passed this on to me, and asked me to pass it on to any other woman who was having the op. I have no idea if there is any truth to this, but I did as she said.

And finally - the bliss of bypassing the 'feminine hygiene' aisle when doing a shop. No more pads or tampons!

At the moment I would rather wait. Yes I’m in pain and yes I want surgery but my daughter is my main concern, all I have is help for one week then I have to care for her single handedly, she needs help bathing, brushing her teeth, washing etc…., I can’t care for her on my own if I have abdominal surgery if there’s not enough support in place. So yes, I would put up with the pain and bleeding if it meant a smaller surgery.

The only reason it was booked as abdominal was because she said my uterus was too large for vaginal, there was no mention of any other reason.

What have ss said sbout additional support for 6 weeks?
They can allocate funding as one off so you can get agency staff in for 6 weeks

And what is contingency if you need to stay in longer than planned etc?
Speak to ss your dd social worker
What is the contingency plan?

You are entitled to support for this
Do not stay in pain

They have said they can’t sort anything until Easter because she’s moving from children’s services to adult services there forms that need to filled in and financial checks that need to be done, most of these I can not apply for until her 18th birthday (which was when my surgery was scheduled for, it’s now moved 3 days after her birthday). I have been on the phone to SS every day, I’m in contact with adult services most days and they just keep telling me that no extra care can be put in place until Easter at the earliest. I have my mum moving in for the first week, 2nd week my mum has to go back to work but she can pop in each day, 3rd week dd1 will be home from uni.
I live rurally, dd likes to go out every day (almost), with abdominal surgery I won’t be able to drive for 6 weeks at least (insurance won’t allow), with vaginal hysterectomy I could possibly drive by week 4 which will be when dd1 goes back to uni.

Currently I have 2 hours care a week, adult services have agreed to continue this until they have sorted a new care package around Easter time, 2 hours isn’t enough if I am unable to bath, wash, cook for dd.

Oh course if something goes wrong with surgery my mum would take more time off work to look after dd but I have no idea how she’s going to cope caring for dd as she’s not cared for her for more than a few hours since dd was small. Since dd1 left for uni dd2 has got very clingy, she won’t sleep unless I’m here, she won’t let me go out for a few hours and leave her with her sister. She has a rigid routine that I am sadly a part of.

At the moment my dd doesn’t have a social worker, to get one would take months as there’s a process to go through just to be accessed for one. I am dealing with adult services through our case worker. The issue is her turning 18 and there being not transfer period from children's to adult services. It’s just unlucky that my surgery had been scheduled near her birthday.

Yes it can be. Cliff edge. From children to adult
However they can push thru an urgent package . Two hours per week is ridiculous.
Is there an agency who could send someone each day?
Can you speak to your locall councillor say you need urgent package care of 12 hours per day x 7 days per week for six weeks from x date due to surgery.
Your mum and dd csn be around but your dd is entitled to full time care as an adult.
This is a very specific request to put in place urgent package of daily care during your recovery and during that time discuss afterwards what she needs.

1.Contact your local councillor and explain.
Do not play down your pain.

1. Identify an agency who can send someone every day during your recovery

1. Ask they put that to panel urgently

1. Email head of adult social care. Cc your councillor.

It can be done.
If your mum is there great or your other dd but they are under no obligation, adult care is obliged to cover this.

You need to say you and your family cannot cover dd care needs during your recovery period.
It is time limited and can be done.

And going forward your dd as adult has far greater needs than 2 hrs per week.

All the guidance around young people of this age with disabilities is to the effect that planning for transition to adulthood should start early, and that there should be a lot of liaison between child and adult services to ensure a smooth transfer between them. It's all aimed precisely at making sure that there isn't a gaping chasm with no services opening up for children to fall into on their 19th birthday.

Seriously, you need to get legal advice about this.

We have had contact with the transition team for a year but nothing has been put in place, they just kept saying they would finalise stuff when she turned 18. Seriously I am trying everything but there are no carers and there is no more funding in place until they look at her finances (she doesn’t have any). I’m seriously stressed about it. I’ve just spent this morning bathing her as she’s covered in poo from not wiping herself, I can’t do this on my own after surgery and mum is unlikely to even notice (she won’t check dd, dd dresses herself and gets herself ready for college but her hygiene is non existent and she needs constant reminders and some personal care). I have 2 weeks until surgery…if it goes ahead, have spent the past 2 weeks making calls, trying to deal with the fact my consultant got it wrong about my diagnosis, trying to get the house up together, trying to get y head around everything. I’m exhausted and dd is obviously picking up on it too.

There are no overnight respite places.
There are no carers.
We live rurally which makes it even harder.
Her current carer is away until Easter (so we don’t even have the 2 hours care).
We use an agency, they have no spare carers right now.
Local MP is useless (have contacted him before).

Your local councillor has direct line to council
Go to councillor with your immediate issue
If no carers they will need to send dd out of borough to residential respite
Where does she go to college
Who takes her there?

Do you have space for a live in carer au pair type person for six weeks but disability trained?
Speak to SNAP care and cost it and then say you need this amount for the six weeks.

They do not need to assess for this one off and they knos full well your dd earning capscity and income if she on pip esa etc
Do you get her benefits paid into a separate acvount so you csn easily share bank statements

https://www.snapcare.co.uk/

Or look up other agencies in your region

I don’t have a space for a live in carer as dd1 will be coming home and will be needing the spare room, so the rooms only empty for 2 weeks (my mums staying in it for one). Have spoken to adult services again today as they called to ask if I had filled in the finances forms, I explained that I can’t fill the forms in as they won’t except DD’s date of birth as she’s not yet 18 😡, she’s now trying to call them to see if there’s a way around it.

Im trying not to get myself worked up as I’m not sure what Mondays appointment will bring, my surgery could end up being cancelled or hopefully be switched to the vaginal hysterectomy with a faster recovery time. At the moment (after the morning I had with dd) I am likely to say no to abdominal surgery if that’s all they offer me. I’m reading stories of women not being able to get out of bed themselves for 2-3 weeks, people not being able to drive for 8 weeks, I just can’t do that whilst dd is living with me.

She gets a taxi to college so that’s not a issue.
PIP goes into my bank not a separate one, adult services are saying she has no finances, so I am hoping they won’t take her PIP to pay for care.

Open an account under your name but to receive all her pip keep it separate from yours

Transsfer from there to you for living costs etc

Does she have capacity ?

Are there rooms to rent or airbnb near where a temp carer could stay?
Have you tried advertising locally for a carer )s) someone able to get to you
Might suit a student if over uni hols
Or a TA from the collehlge
Have you slapproached college? Maybe a TA looking for additional hours on short term basis

Then ss can give you /pay agency the funds to employ directly use a pay agency like paypacket to work out tax etc

She doesn’t have capacity, as she’s turning 18 I will have to prove that and get power of attorney.

No Airbnb near by, no B&B, we live on the edge of a village with not much near by. We have struggled to get carers just to cover the 2 hours a week.

Her college is a hour away (another county) so no TA from college living near by. SS won’t give funding until finance form is filled in (as I said above), all they will agree too is continuing with the 2 hour a week until paper work and assessments have been completed.

I also can’t just move a stranger into my house, dd would not like that, she needs to be introduced to people slowly, she’s even going to struggle with my mum because she doesn’t really have much to do with her.

You cannot get power of attorney if she lacks capacity
Its deputyship which is more complex
If you have dwp appointeeship it is enough for now
So she needs supervision 24/7?

Carers to cover a whole day might be easier to recruit than asking them to travel for two hours ?

If you are out of action they have to organize something

If anyone’s still following.
Had my hospital appointment today with consultant, on my way there my phone rang and it was my smear results, they have come back with abnormal cells, told them I would discus it when I got there. Now looks like my surgery maybe pushed back a week or 2 as they want me to have a biopsy and get the results back before my surgery (which was meant to be the 18th). On the plus side they have agreed to laparoscopic/vaginal surgery instead of abdominal, there’s a tiny chance they may still have to open my up but it a 10% chance so I will take that.

@Lovemusic82 so a mixed bag of good and not so good news. Fingers crossed for a good outcome.

Thank you. I am trying to be positive, the smear was borderline so I’m hoping it’s nothing to worry about and once my cervix is out I won’t need to worry. Just a pain that it might effect my surgery date but it is what it is.

Fingers crossed for good news from the biopsy and that you can go ahead with lap/vaginal. I had mine done that way and was home the next day, driving after 5 days, feeling pretty much back to normal at 2 weeks (took the kids to center parcs and was swimming/riding bikes etc). I went back to work after 3 weeks but the last week wasn't really necessary. The worst bit was the swollen vulva from where they'd struggled to get my uterus out!

@welshweasel A) you last sentence was something I never thought I would read B) my legs involuntarily clenched when reading it.
😱