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.

Wow, I didn’t want to read & run & hopefully someone with more knowledge will be along soon. But as a former midwife I’d say this is similar surgery to a c section & you would need 6 weeks off work & no heavy lifting or driving for a while. A short hospital stay & a few weeks of blood thinners possibly? Did they do a scan or explain why the uterus was large?

Check with your car insurance regarding driving. I couldn’t drive until 8 weeks or signed of by doctors at my post op check up - whichever one came first. I wouldn’t have been insured if I had an accident. So check with insurers.
As for recovery, it is 6-8 weeks and don’t rush it, unless you want to increase the potential for problems in your future. It is major surgery to recover from. Having said that … I was happily walking around the wars by day 3 and walking dogs for normal walks by week 4. By week 6 all normal activities other than driving (see insurance issue above) but happy being a passenger.
but I was 28 - and recovery from surgery is easier when younger. Take pain killers as prescribed, don’t lifer anything heavier than a cup of tea in the first month, use a towel across your scar when coughing/laughing/behind your seatbelt when being a car passenger.
If offered a morphine pump for after surgery - accept it!
Good luck and I hope it all goes well.

No scan, just poking and prodding. Last time I had a scan was about a year ago and nothing showed up. I thought I had put on a small amount of weight, I’m not huge so noticed my belly was a bit swollen but nothing major. I was told the incision would be the same as a c section. At the moment I’m not working as I care full time for dd but am in the process of setting up my own business but that’s something I can do whilst resting. The not being able to drive will be the hardest bit as I live rurally but hopefully I will have friends who can bring my things (and online shopping). A nurse said 2-3 nights stay buy gynaecologist said 1-2 nights, ideally I would rather stay 3 because once home I will have to care for dd.

The nurse did mention the car insurance thing 😬, hopefully I can rope a friend into driving me around or I will go crazy stuck in a small village.

What do I need to pack for hospital and what clothing is best for the weeks after as to not aggravate the scar?

Make sure that know about your caring responsibilities, and that you will be essentially alone at home. That may well keep you in the 3 night then. Admittedly it was nearly 30 years ago for me - I went in in the Friday for surgery, and was out on the Tuesday.

I had an urgent hysterectomy in 2020 after an endometrial cancer diagnosis at 48. If it is cancer, endometrial is one of the most treatable.

In terms of recovery, it sounds like you are having a full abdominal incision? Mine was laparoscopic so an easier recovery. However, either way, no lifting anything heavier than a kettle for several weeks. You must take it easy, it's a big op. I was tired for a few weeks after.

Do take peppermint tea/tablets for the post operative wind, a long phone lead, comfy stretchy clothes for after as your belly will swell, and a cushion to put under the seatbelt for the journey home.

I hope it all goes well op. Hysterectomy Sisters on Facebook is a good group to join.

Clothing - go loose tracksuits or an elastic aged skirt that can go above your belly button. Easy slide in shoes and loose layers like t shirt/cardigans etc.
For in hospital they may have a list of requirements. So ask or hunt the website of hospital. But generally easy access nighty or pyjamas - they like to be able to inspect stitches and staples etc. you will have a drain and catheter. Slippers that fit with anti slip soles. You may have to wear surgical stockings. Take a blanket. They never seem to have any. Squash to drink. Phone charger lead longest length possible, a book, headphones. Wash kit, towel, pads, hair brush. A bit like if you were going away! Do not take anything that you would be cross in losing. As things do go missing/dropped in rubbish/fall in the floor and break. Arrange a lift there and back.

Yes it’s a full abdominal incision, I had mentally prepared myself for keyhole/vaginal so it’s a bit of a shock. They are leaving my ovaries which I’m hoping is a good sign that they think it might not be cancer? They have said they might have to leave some or all of my cervix too because of possible scar tissue but won’t know until surgery. I am secretly hoping they will change their mind and do a vaginal surgery but I’m not sure how possible that is unless my uterus shrinks in the next 4 weeks.

I’m having it done in a Friday which might actually work out well as they don’t seem to discharge on a Sunday? So hopefully I can stay until Monday. I hate staying in hospital but I know once I’m home I will be tempted to do more than I should. My mum is coming to stay to look after dd bus the will also be at her dads on the Sunday.

I had the lot removed. Ovaries and cervix. All I can say is I felt soo much better immediately afterwards, I hadn’t realised how ill I was prior as you adapt and get used to how you are. Happily hugged the consultant!! It is major surgery, but hopefully things will be sorted and you will be on the road to better things.

This happened to my friend and it turned out there was a large fibroid blocking her cervix. They admitted her there and then to do the hysterectomy she was bleeding so heavily and they could see this 'thing'. She was in her early 50s. Fine once she got over the surgery.

@Lovemusic82 that sounds like it quite possible you might get the time you need to start your recovery. Although don’t be surprised if you find it easier to recover at home. Because home is quieter and more comfortable to relax and sleep.
Just emphasis your care commitment- if they get a sniff of you have help, then you might be booted sooner. But yes, weekends seem to mean less doctors etc to discharge you!

Thank you, I am a little excited that I’m only going to have one more period. I have been unwell for a long time (years) and can’t remember a day I haven’t had pelvic pain in the last 3 years. My mum had the same surgery at a similar age and says she felt better straight away, I’m hoping I feel the same. If all goes well it’s going to totally change my life.

Speaking of home - get some easy cook meals or preload a freezer with portions of home cooked meals. Cooking was a tad difficult for a week. Plus being tired it was nice to not have to think beyond deciding between shepherds pie with all the veg already in it, or defrosting some chicken filled homemade pancakes.

I had everything removed, full incision. Went in at 12 noon on the Friday was back home at 10 am on the Sunday.

Best thing ever ... such freedom!

No problems with recovery

Wasn't allowed to drive for 6 weeks

@Lovemusic82 yes! It does totally change your life - and your bank balance ££££ moon cups weren’t around for me. I think I spent the equivalent of our shopping budget each month on sanitary pads, tampax and pain killers. Wore them both daily for far too long.

Good luck OP. Driving is actually limited to being fit to drive. Advised to wait 6 weeks isn't the same as mustn't drive before 6 weeks. You just aren't covered if your surgery contributes to an accident. Our GP was happy to sign off post C-section at 6 days as not taking painkillers other than paracetamol.

BMW insurance wasn't even interested in GP signing off aslong as no sedating painkiller and more than 72hours post anaesthetic.

Thank you. I’m just ordering some nice pj’s and nighties. I will be loading the freezer up. Sadly no take aways deliver here so I can’t live on Uber eats.

I’m petrified but excited because everything I’ve been through over the last few years will come to a end.

I just had to tell my dd1 who is away at uni, I’m worried that she will worry about me, she will be home at Easter and can help out a little with her sister and hopefully load the washing machine and do a bit of cooking.

sadly I can’t take morphine or codeine, I am hoping there’s something else I can take though I survived having my appendix out and child birth with just paracetamol 😬.

I've no experience, but know that the failed ablation may well be due to a 'bulky' uterus (a friend had the same). This may well be why you aren't a candidate for trans-vaginal hysterectomy - I had one and know that even then they have to cut the uterus into pieces.
Try not to panic as there may be no other reason that this plus possibly a fibroid as PP have mentioned.
One thing I would say, though, is that you really must learn to say 'I can't' rather than 'I shouldn't' - it's a big operation (after all you're having an organ removed) and you need to give yourself the best chance of recovery without prolapses down the line.

All I can say is that I felt 100% better the day after my hysterectomy. You will be amazed what an improvement this will be. One less thing to worry about in your busy life.

Big knickers!

(Sorry but you did ask!)

I had a full hyst plus both ovaries and the omentum removed by an abdominal incision, with only a few days' notice, and was in hospital from Fri- Mon. Two days after I came home was Xmas day!!

My SIL bought me a onesie to wear around the house and honestly, that was the best thing ever - it was a heavy duty one so nice and warm and of course there was nothing compressing my tummy. I was so swollen, I normally wore size 12 or 14 knickers and had to send someone to Matalan to buy several pairs of high waisted size 18 knickers for temporary use!

It wasn't just the operation, but the blood-thinning injections into the abdominal wall which made me very bruised and sore.

You might find you need to go and lie down and have a nap once or twice a day for several days after you get home. If dd can't be left alone for any length of time, you'll need to plan round that. Don't think that you'll just be able to push through it - even if you can, it won't help your recovery.

You might find you want more sweet sugary snacks than you normally eat, so stock up!

Have you asked them WHY you need the surgery so urgently ?
What they found in the examination that means it's urgent ?

I didn’t ask as I was trying to process what they were saying, I was in shock as I had planned that I would have surgery in a years time (or 6 months if it was quick). They implied that it was because my uterus was so big? They didn’t mention the C word other than when they said I would be put up the top of the list with people who have been diagnosed with C.

I will order large knickers. I love in baggy dungarees so will be wearing them once I’m up and about, I will order some nighties as I’m guessing they will be more comfortable than pj’s? Hospitals are always hot so I’m trying to find a non fluffy dressing gown, I have a oodie at home.

You should write down the questions that you have and ask your surgeon. They should have given you the number for it, but if they haven't you can just go to the main hospital switch board and ask for the gynecology department.