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.

Label your stuff if possible. Things often go walkabout in hospitals, especially if there are confused patients around (entirely possible, especially since so many elderly people are in hospital that they are being bedded in all kinds of places and spaces).

OP I mean this very gently but you need to be way more assertive at finding out why this is needed. You need to give informed consent, at the moment it sounds like you haven't got a clue what is going on and this is major surgery to your body.

I had open abdominal surgery last year for a very large ovarian cyst removal. Not completely the same but I probably had a similar experience. My incision was vertical (mid line). I spent 2 nights in hospital. They said originally maybe 3, but because I was in minimal pain, able to walk around, eat and urinate, I could go home after 2 nights.

Be prepared to be sore afterwards and have a lot of difficulty moving around. The first few days I couldn't get myself out of bed because my stomach muscles just didn't work. It was very uncomfortable to even stand up straight because I could feel the incision stretching. They fitted me with a morphine pump immediately after surgery but I didn't need it much. I only used it twice, then I was on paracetamol and codeine but honestly I wasn't in that much pain and managed without codeine after a day or two. It was much less painful than I anticipated.

Oddly I found it very difficult to wee for the first week or so! Don't be surprised if that happens. I could wee, but it was extremely slow and I had some odd sensations in my bladder for a bit.

As for clothes - baggy knickers, and stuff that doesn't sit on your wound, like nighties, dresses, dungarees. I couldn't wear trousers for a few weeks. You'll very likely get given blood thinning injections to give yourself immediately after surgery too - I had to self inject for 10 days. I was also given compression socks to wear for 6 weeks which I hated haha

I had 7 weeks off work and wasn't allowed to lift anything heavier than a bag of sugar for 6 weeks. So no lifting a full kettle! No housework or anything strenuous.

I was told I could drive as soon as I was off codeine, and able to do an emergency stop without pain.

Good luck OP! I hope it goes well.

Good luck @Lovemusic82.One of my oldest and closest friends had the same news about 2 weeks ago and we have talked about it for hours. You've had loads of good advice. I hope it goes well for you.

All I can advise - based on my experience of C sections - is to fill your freezer with hearty meals to warm up whilst you are recovering. I hope it all goes well

Me too! I was 33.

I had mine at 42. The only thing I wish I’d done differently 10 years on was to ask them to take my ovaries as well.

I agree with pjs, nighties, big pants, freezer food etc. take your own pillow with identifiable pillow case into hospital you.

I also arranged a cleaner for 6 weeks. Just to keep on top of the house. Yes, I have a DH but at that point kids in 2 different schools plus his own work commute of an hour so he had a busy day without cleaning to be factored in. This and freezer meals were by far the best investments.

I drove at 6 weeks with permission from my insurance. I went back to work with a phased return at 7 weeks. That lasted 2 weeks then I was back to normal. To be honest I probably could have gone back to work earlier but they wanted me to take the time and I was happy to oblige.

edited to add, I have just remembered, moist toilet tissue. I found wiping extremely difficult, even just a wee. I’ll not go down the poo route but make sure you’ve got stool softeners.

I had the uterus and cervix removed (large fibroid). I was in for 2 nights but I had someone at home and also I think the fact I'm a HCP (nurse) made them think i'd have the sense and knowledge to seek help if needed!

It is a HUGE op so take all help needed from your daughter's dad, your mum and social services for her. Yes it's for 6 weeks but you need to be fully recovered to look after her long term.

I was off sick for 12 weeks, and tbh I'd be guided by that....if you're fully recovered before then, all well and good, but you do need to take care.

Be warned, I had a UTI in the first week, they're common, often as a result of being catheterised for the first couple of days.

I had it in 2015, and long term the only problem I've had is what I believe are mild adhesions. Adhesions are caused by areas of scar tissue rubbing over each other, and are unavoidable. They're a normal reaction to stitches. They can rarely cause severe problems but this is very rare. With me, I get an occasional, very mild abdominal pain when I move, lasting seconds. It's nothing to worry about x

My top tips based on a few years with an acute pain role (some of this as already been said so sorry for repeating)
Take all the painkillers prescribed regularly -paracetamol and ibuprofen taken regularly are surprisingly effective
There are alternatives to morphine and codeine so ask
Don’t reduce your painkillers too early - lots of people miss a dose of day 4/5 thinking they’re improving and end up a sobbing mess by lunchtime and fine it hard to catch up
Keep moving gently in the early days
Stand up as straight as you can - feels harder on your wound but slouching will leave with back and shoulder pain
Drink as much as you can - means to have to get up twice. Once to get the drink and once to go to the toilet. Your bladder will feel a bit peculiar to begin with as a PP described. It’s partly the opioids, partly the surgery and partly the anaesthetic.
Peppermint oil capsules /peppermint tea for the wind pain
Prunes/dried apricots to prevent constipation
Take all the help that’s offered to you when home. And ask for more if you need it. Plenty of friends won’t want to interfere/intrude but would be happy to do a specific tasks of asked.

https://www.bupa.co.uk/health-information/digestive-gut-health/adhesions

I will be asking questions but I really don’t think they will know what they are dealing with until the surgery. Google has reassured me some what as there’s only a small chance it’s Cancer, there are several other causes of an enlarged uterus. I was expecting to go in the list for hysterectomy anyway but just wasn’t expecting to be pushed to the top of the list. The time I would have to wait for scans or a biopsy (which would have to be done under GA as yesterdays attempt failed) I might as well just wait until the hysterectomy in 4 weeks. What ever is in there is in there (or not) so I’m just trying to focus on the fact it will be removed in a few weeks.

Thank you everyone for your advice regarding recovery. I’m trying to get lots of things out in place so I can recover. I have family to help with dd and a respite carer who has offered to come in every day during the Easter holidays to take dd out, my eldest dd will be home for Easter too and will help out the best she can.

I am worried about getting in and out of bed as I remember it being tricky after having my appendix out, my bed is a bit low so I might see if I can put another mattress under mine to make it a bit higher, that would make it easier getting in and out? I have ordered nighties and big knickers for hospital. I have a few weeks to get the house up together and fill the freezer with meals.

Mine was life changing. Severe adenomyosis had left me bleeding and in excruciating pain most days for about a decade, I walked out of the hospital 18 hours after my op as I was in far less pain than I went in with so they said I could go! I only took painkillers for the first day

I was driving 2 weeks later (my insurance wasn't bothered as long as consultant said it was ok. Consultant said I was good to go if I could stamp my foot on the floor without wincing)

It was silly little things that caught me out. I did myself a mischief by trying to put shopping away, but your body is great at telling you off - just listen to it

Also recommend the hysterectomy sisters Facebook group - lots of knowledge there and useful things like hospital lists. And great for support, the lead up is often very anxiety inducing

Thank you, I’m think mine is likely to be adenomyosis as I fit all the symptoms, I’m hoping I will feel much better afterwards, I’ve almost forgotten what it’s like not to be in pain or bleeding.

I drive a new automatic (DD’s mobility car) so it’s pretty easy to drive and almost drives itself, so I’m hoping I can be driving fairly quickly but I won’t get my hopes up.

I had one in June, (I have also had c sections and an ablation), and yes to big knickers and nighties! (I couldn't do pjs).

The biggest thing for me was the fatigue. I was soooo tired, like I had never been before. I recovered from the surgery very well but I was allowed to rest. My mum came to stay and took care of the day to day stuff. You will be tempted to quickly vacuum... DONT! (Esp around week 3. I had so much energy and felt able to take on the world! Did too much, and was exhausted again...)

Yes to stocking up the freezer. Ask for help with shopping, DD, cooking, housework. Get a pile of books to read and ignore everything that isn't urgent.

Join the Facebook group. I found it super helpful.

Rest, rest, rest, rest.

I had an enlarged uterus and I did manage to get it to shrink very quickly with weekly acupuncture (confirmed shrunk with vaginal ultrasound)

Speak to your teen s social worker they can allocate extra direct payments and/or respite care for 6 weeks .
Be realistic ask for 6 weeks x 12 hours day if nights are not needed

I had a laparoscopic hysterectomy a couple of months ago. I would say it's was the best thing ever and my life is no longer ruled by flooding, san pro and pain. They didn't know until they were in having a rummage as to how they would do it but laparoscopic was what they were aiming for.
There are a few really helpful threads on here on what to pack for your hospital bag, what to expect afterwards.
The worst bit for me was the trapped wind. I had bought beforehand all the different windeze/ indigestion/ pooing aids and i used them - all of them.
After a couple of weeks post op I did get a letter from the hospital saying the bleeding was due to fibroids and they were all benign as expected. My care in hospital was faultless - the surgeon came to seem me a couple of times after it and the nurses were in constant contact.
Best wishes!

@Lovemusic82 What a shock this must have been; good luck with the surgery. Do you have a bed frame with bars at the foot of the bed? If so, tie a piece of material around it which is long enough to grab onto when you're lying flat - you can use it to help pull yourself up L. I had a c-section fairly recently and this would have helped loads (only saw it recommended once I'd healed up!), as the most painful thing was getting into a sitting position from lying down. Otherwise I recovered really speedily; keeping as active as possible helped, so I was going on short walks from day two and built up to being able to walk 5K after three weeks.

I had a different op (gallbladder removal) but two absolute life savers for me were Oodie nighties (huge!) and V shaped pillow

Hope it goes well x

I have to admit, I've read all this and am wondering about the need to go straight to hysterectomy.
I've been through all the things that you have including the bulky uterus, I was given a womb biopsy then a hysteroscopy under GA, a huge polyp was found, removed and biopsied. A hysterectomy was never even mentioned.

But my recommendations for abdominal surgery after having a big op for an ovarian cyst are big knickers and peppermint tea (the wind was awful, especially when you have stitches!). Cushion your incision with a pillow if you need to cough.

That’s a great idea, I do have a bed with bars at the foot. I remember really struggling after having my appendix removed, I remember lying there laughing and crying whist trying to get myself out of bed into the sitting position so it’s my main worry. I walk every day at the moment so it’s something I’m going to miss a lot, the sooner I can get walking around the better as going for a walk helps hugely with my mental health. I have ADHD (hyperactive type) so the resting is going to be a challenge, if I can get out for a short walk after a couple weeks it will help a lot.

Big knickers for comfort, I would go with loose but warm clothing, would avoid trousers that are tailored and maybe get a size bigger than normal to allow room. make sure to have plenty of pain killer supplies in and a few snug blankets or throws for the sofa. Line up some TV watching, books and or other things you do.

Also be prepared for dates to change - even with urgent things can change

My worry is getting there and it being cancelled, I know it’s possible with emergencies and strikes 😬.

Please, please don't haul yourself up using a rope. That's akin to lifting a good chunk of your own body weight and sounds like a recipe for a hernia. You're supposed to roll onto your side and drop your legs off the side of the bed whilst pushing yourself up to minimize the use of your core muscles.