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.

Ha ha, I wish the surgeon had warned me to be honest - had both my kids via c section so had never experienced swelling like it! Had to get an ice pack to put in my pants.

Thank you, it’s great to hear positive stories, I have heard that I might be a bit sore down below afterwards 😬, I have had 2 vaginal births, both with some pretty awful tears so i am expecting it to be similar?

Update. Had my colposcopy last Thursday, it showed abnormal cells, was told CIN1 and 2 at least, they took a biopsy and I was asked if I wanted to move my surgery date to April, I chose to keep my date for next Monday as I have everything in place (or as much as I could for dd), I was told if my results are not back it will be cancelled, if the results come back as CIN3 my surgery will be cancelled and the cells treated before I can have surgery. With summer holidays looming (dd breaks up in June) I can’t see how I can have surgery any later than the first week of April as I need to be able to to drive and care for dd, plus with have a holiday booked and I stupidly didn’t pay for insurance (only a uk holiday). I’m not sure where I would stand on delaying surgery until October/November? Because they were unable to do the biopsy on my uterus there’s still a very small chance I have uterine cancer so I’m unsure if they will allow me to wait for surgery. Chances are I will need to have the cells on my cervix sorted and get the all clear before surgery anyway which could take me up to May time for surgery.

At the moment I’m in limbo, waiting and hoping that my biopsy comes back with only CIN1/2 and that it comes back before Friday.

I’m also in pain since the biopsy, I feel really bruised down there and have had a lot of cramping, tempted to get checked over by a nurse tomorrow.

Nothing seems to be going to plan.

Adult services are being awful and have only agreed to the 2 hours a week support for dd and 6 hours a week during school holidays, communication has been pretty awful and her case worker doesn’t seem to understand what I’m saying (her English isn’t the best). My mum has taken next week off work to look after me but now surgery maybe cancelled and my mum can’t get another week off until after the summer.

I can't get my head around this
So they need to treat your cervix , and then remove it anyway ?
Did they explain why they need to remove the cells if the whole thing is coming out ?

I know, it sounds crazy to me too but I was told if it’s CIN1 or 2 I can go ahead with surgery, in CIN3 they want to treat it first. I don’t understand why? Is there a risk it will spread during surgery? I’m not sure? I did ask but didn’t really get a clear answer. My cervix is being removed anyway, and even when women are diagnosed with cervical cancer they are usually offered a hysterectomy?

If the surgery doesn’t go ahead I am tempted to ask to be referred to another hospital. They already got it wrong by saying my uterus was the size of a 14wk pregnancy when it wasn’t and now this. I don’t believe I have uterine cancer so I don’t think surgery is urgent but there is a tiny chance I have cervical cancer and I definitely have pre cancerous cells.

And I don’t think I can deal with them poking me around yet again to treat my cervix only for them to remove it a few months later, it seems really stupid and unnecessary. My poor nether regions have had enough, I feel bruised from the biopsy and it now also feels like I have an injury near my bottom (not sure how this happened).

apologies for the crudeness. But I wonder if the pain your are experiencing near your bottom is due to the proximity of nerves, or they had a tool pressing on a nerve in that region. (I’m thinking ‘dagger arse’ during/near a period type pain?)

I too cannot see why treatment would
be needed if they are ultimately planning surgery very shortly after unless it’s to stop rogue cells? But, I (personally) wouldn’t opt to delay surgery, my analogy would be if a car is written of in a car crash, you would dispose of it asap, and if your anatomy is similarly wrecked then disposal sooner then later might be a better option healthwise for you. I’m just thinking it might prevent you needing further treatment if things are left untreated. Although I really appreciate that there seems to be an awful lot of unanswered questions regarding what the problem is and why they are suggesting the various treatment pathways. Is there anyway you can get more information either from the hospital or from your GP?

wishing you the very best outcomes.

Think track suits and large undies are a must. Slip on shoes and slippers are a good edition to your wardrobe.
Don't go in hoping they take out as little as possible. Go in hoping that they take what's necessary to be removed so that you don't have any issues going forward. In the US they remove the total uterus as leaving the cervix, which is where most uterine cancers start, has been found to a bad idea.

I think it must be some kind of nerve they have hit. It’s a similar pain I had after giving birth (right in my bottom and lower back), currently sitting on a heat pad hoping it improves.

I have been told the surgeon will refuse to do the surgery without the biopsy results and will unlikely go ahead if CIN3, I am hoping they will change their mind which is why I refused to cancel the surgery date. I just want it done and to be recovered for the summer.

Please make an appt with local councillor. You having major surgery and adult care need to be ready to step up.
What s the contingency if you out of action ? (As your mother cannot step in full time)
Post 18 her dad can refuse as well.

I think her dad would step up if needed, he has offered to help a little (he’s going to have her on her day off of college which is helpful). I’m going to talk to her dad tomorrow as I need to make sure a plan is in place just incase. My mum would do what she can to help if needed, she’s not working full time thankfully and lives locally. It’s just hard s no one really understands dd like I do, my mum hasn’t been over to prepare for looking after her, when ever I try and tell her about DD’s routine she just saying I’m stressing over nothing even though dd needs to stick to her routine or she will be a total mess. My mums never seen dd have a meltdown or watched her hurt herself, no one really spends any time with dd other than me and her dad (one day a week).

Surgery is going ahead. Biopsy was clear (not CIN3).

That's good news OP. Best of luck.

I've been lurking, @Lovemusic82.
That's great news. All the best for your surgery.

Thank you.
I really thought it would be cancelled. Spent the afternoon trying to get hold of gynaecology to find out what was going on, then got told they had my results back but consultant had gone home so couldn’t discuss them, eventually a nurse called me back and said “nothing suspicious in the biopsy” so all good to go. Now panicking and trying to get things in order before Monday, bags packed, just need to clean the house then I’m good to go 😁.

Hope all goes well.

@Lovemusic82, Monday is the day the MDT are supposed to discuss my case - to decide what surgery I should have and then I'll get an idea of what might happen.
I'll think of you if you think of me!
(But no, I'll be thinking of you anyway. No-one deserves to be messed around the way women are at times.)

Hope everything goes as planned x

Good luck, I hope all goes well and you get the outcome you want.

Wishing you the best OP.
Been following your thread & so pleased about the outcome of biopsy and the fact you're likely to have the vaginal hyst now.
Am in a similar position and your thread & everyone's posts have been sooo very helpful!
Keeping fingers crossed for you.
Good luck and take care of yourself (also to all the PP's recovering or waiting for ops!) 🤗
Please come back to update us! xxx

I am out the other side. Everything went well and I was only in hospital one night. Recovering slowly at home and taking it easy. Should get my pathology report in the next 2 weeks and then hopefully I can move on from it. Dd has been amazing and is even helping to make dinner.

That's brilliant. Well done to you & DD! Hope everything goes smoothly now

Great news OP.
Hope your recovery goes well and that the path report is clear.
Thanks for the update, really glad you're ok (and DD too).
Take care! xx