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.

I had exactly this scenario. I had surgery in 4 weeks.
I had huge fibroid, in hindsight I did look 7 months pregnant. The reason for the urgency was that they couldn't biopsy to check for cancer until it was out. Also it was in danger of damaging my bladder.
Less than ideal as I had started a new job( issue found as part of the medical).
I was out of hospital with 3 days, and was back at work, office job, in 7 weeks.

Put your bed on blocks rather than an extra mattress!

That exactly what it sounds like, I am hoping it is a fibroid. I do have pain when my bladder is full. I have had bloating but yesterday my tummy didn’t seem that bloated at all so I was shocked when they said my uterus was so big 😬. My mum had a hysterectomy because of fibroids and was a similar age to me so I’m hoping that’s exactly what’s going on here.

Wow, I would absolutely not agree or sign any consent form without more information. But I sympathise because when consultants rush us you sometimes feel like you just have to go along with it all. I would ask for an urgent appointment to discuss why they feel this is necessary and urgent especially when you’ve had no recent scans and failed biopsy. And absolutely you should tell them about your home situation, if surgery isn’t 100% necessary they should factor that in. Good luck

I did tell them about my home situation, one of the nurses was lovely and was backing me up but the gynaecologist just said “it can’t wait”. Of course the more I think about it the more I am panicking as they said they would be putting me top of the list with cancer cases, so now I’m thinking that they are treating it as cancer? They mentioned some abnormalities with my cervix but I was in pain whilst they were telling me as they were trying to insert the scope and dilate me with water. They mentioned that it could be from my ablation but I have had scans and internal examinations since my ablation and all was fine (was told the thickness of my womb was patchy so some had grown back). It’s hard to process what was being said to me as I was in pain with my feet in stirrups. From what I remember she said she couldn’t get past my cervix to insert the scope and my uterus is very enlarged, so possibly a mass blocking my uterus/cervix.
I have pre op on Thursday but I’m not sure if I will be able to ask more questions, I’m guessing nurses to pre op and I will be in and out pretty quickly.

I am in a lot of pain, the past few weeks the pains have been much worse, enough to have me pacing the room at night, my periods have been no worse than they have been for the last 2 years (heavy with clots and spotting between periods), just a lot more painful. I have been dealing with this for years and been pushing for a hysterectomy, I was told 6 months ago that I could have keyhole hysterectomy and was preparing to get the go ahead at this appointment (they wanted to do hysteroscopy and biopsy first). So I’m a way it’s good I no longer have to wait as I was expecting to wait a year but it’s also a huge shock and a worry to why it’s so urgent.

So sorry you’re having to go through this. Could they not do CT or MRI? Surely that would tell you more about what’s actually going on.

I am annoyed that I wasn’t offered any kind of scan, surely an ultrasound wouldn’t have taken long (they can do it in the woman’s hospital)? It’s all confusing me. I’m in a lot of pain today and I’m tired from worrying.

Have you discussed with your dd social worker what they can put in place including g daily carer hours and respite care?
They have flexibility to award one off lump sum direct payments for this scenario
It should not be all on family you are entitled to the help
And contingency if you have to stay in hospital longer
Does dd have overnight respite ?

@Lovemusic82 I had a Total Abdominal Hysterectomy 2.5 weeks ago, ovaries, tubes and cervix removal as well. Through the tummy.

I'm happy to answer any questions you have - I had mine removed due to one large fibroid which was putting pressure on my bladder, then elected to have the ovaries out too (already in peri menopause and removes any risk of ovarian cancer - which is a very tiny risk, but a nasty one).

I had 3 nights in hospital. Discharge seemed to take hours - it took about 8 hours from saying it was happening to it actually happen, so wasn't home until dinner time. Pain relief wise, I had a spinal block before the General Anaesthetic, then morphine (I think) through the canula in recovery, and after that was on oramorph + ibuprofen + paracetamol and some codeine. Did try some Tramadol but it didn't agree with me. No pump. Plus anti sickness. Plus daily injections of Fragmin for anti-clotting (history of DVT but I think they give them regardless).

When I got home I was sent home with oramorph (less constipating - only used it once though), paracetamol and ibuprofen. Plus Lactulose to help with bowel movements (it didn't). Plus Fragmin to self-inject each night for 4 weeks. Plus Senna to get my bowels moving which I didn't take (they advised to wait a couple of days before taking it).

I was desperate to get home and was discharged without having had a bowel movement which was an error on everybody's part. Ended up with some complications because of that, which in turn has caused some internal bleeding, so if you do have a lack of bowel movement, please speak to medical people - laxatives which stimulate a bowel movement can be absolutely the wrong thing to take, and there's something called Laxido (brand name, I forget the ingredient) which is more of a softener which helps. I think this is NOT common though - just keep an eye on it.

Pack for the hospital:

• Ear plugs
• Eye mask
• Personal stuff - toothbrush, paste, flannel etc.
• Books, kindles, chargers, etc. etc.
• Socks
• I stayed in my hospital gown for 3 days, but not sure if that's standard - nightie rather than PJs I would say. Long enough for you to stumble around in and cover up your dignity, but means easy access and less likely to get caught on drains and dressings etc.
• To go home I wore track bottoms and a loose t-shirt and a zip up jacket - no pants, no bra etc. Big knickers + sanitary pads Peppermint tea (not flavoured tea, actual peppermint tea bags) - be prepared for wind pain, and farting and burping and my tummy was just too weak and sore to control those for a bit !

After I've been home it's been PJ's and joggers (with high waists) and big Bridget Jones pants with high waist - I wouldn't bother with them, except I need pads at the moment.

Oh and slip on boots or something for walking in - nothing with laces or straps you need to do up or push into. But not mule type things where you might trip over.

The scar is quite low down and quite long horizontal - exactly where all my knickers and trousers sit! Hence needing big pants. A big patch of skin is totally numb, but other bits are really sensitive.

Don't freak out if you have bruising and swelling. I looked like Humpty Dumpty for about a week. The main round tummy has gone but now I have what looks like a squishy sausage above the scar which is distressing but I hope will settle down.

Around the house I couldn't do anything - you're advised not to lift anything >1-2kg for at least 2-3 weeks probably up until 6 weeks when the surgeon/consultant sees you again. No hoovering. No lifting of pets, children etc., Its internal stitches and the consequences of messing those up are quite big.

Food wise- definitely load up the freezer but also think about how to cook things and carry things. get things up to waist level, not picking up from the floor... can't lift a kettle with more than one cup of water in it, so I'm thinking maybe a pan on the stock and a ladle for more than that, or for pasta etc.

Oh also - the way to get up from laying down is to roll onto your side, and then push up from your arms while you're on your side. they should show you how to do that in hospital - rather than trying to sit up from laying down. Mostly they're trying to avoid you putting any pressure into your pelvic floor area and risk breaking internal stitches or causing pelvic floor damage.

There's a really good website I only just found and wish I had beforehand called hystersisters - well worth registering and having a poke around.

Ps. Wet wipes for hospital. I didn’t have any sort of wash available to me while I was there. Wet wipes were a life saver!

Thank you, that’s extremely helpful, I’m extremely anxious about everything and I’m building it up in my head to be awful. The only surgery I have had is my appendix and sterilisation (with the ablation) and I took a while to recover from both so I’m worried I will take ages to recover from this, I’m not great at taking it easy which is probably why my recovery is always longer.

Ive just found out that because my dd turns 18 on my surgery day that funding is being stopped for her respite care so I’m in a huge panic wondering how I’m supposed to care for a disabled adult who needs some personal care? I am hoping adult services will put something in place. I have some help from my mum but she will drive me nuts after a couple days and I don’t really want her staying here too long.

A few things I’m not sure about….

I only have a bath at home, I’m guessing I’m not allowed a bath for a couple weeks? How am I going to keep clean?

How long before I can go for a 30 minute walk outside? I walk every day and feel I will go crazy not being able to go for my daily walk. I know it’s unlikely I will be able to leave the house for 2 weeks?

Should I buy one of those litter picking things to pick things up with? To save bending down?

How soon will I be able to make basic meals and make DD’s lunch box? I’m going to try and buy things that I can just shove in her lunch box rather than making sandwiches 😬

When will get to discus pain medication? I’m not able to take morphine or codeine as both make me sick. I’m totally phobic of throwing up.

Did you get a private room or were you in a ward?

@Lovemusic82 You will be in a ward. Private rooms are very rare.
You should get a pre op assessment appointment for bloods/height/weight etc. Tell them about your pain meds issues. I am absolutely sure they will want to know and will be able to help as you won’t be the first or last person to have issues. ( fwiw I react badly to some anaesthesia meds
and they really do want to know).

Pack lunches. - yea you will be able to assemble them when you get home. A good rule of them is don’t lift anything heavier than a cup of tea
for several weeks. So making sandwiches will be fine. Making the actual bread not so much!

The litter picker sticks are good - get one with a magnet stuck in the end. The problem is if you drop the stick…. Then you need a stick to lock up the stick.

You will be encouraged to walk from the day after surgery. I was doing trips around the ward and using the stairs by day two just very very slowly. By the end of the week, if you are careful a slow walk outside for 30 mins should be achievable - take it slow and maybe a stick for support. And no hill running!

Shower due to getting stitches wet is preferable. You can always strip wash. Ask on the wars what they suggest to do.

I cannot advise on your dd conundrum I would chase the social worker.

You will be ok, but try to take life easy afterwards as it helps the healing process. Better ti be a slow snail now, and not suffer complications.

Ive just found out that because my dd turns 18 on my surgery day that funding is being stopped for her respite care so I’m in a huge panic wondering how I’m supposed to care for a disabled adult who needs some personal care?

You speak to current social worker and get it in place before. Most places same social worker til 25 anyway. They just need to allocate funds before she turns 18. I was able to spend "children" d p as ds turned 18. If your respite carer is allowed to care for adults eg directly employed by you and d p funded it should be fine. Otherwise line up an adult carer from an agency. It s ss issue to resolve in terms of the overlap time. You need to spell it out what is needed.

At the moment we don’t have an allocated social worker, they basically dish out the hours or respite then they don’t have anything else to do with you. We have a case worker with adult services transition team but she’s on annual leave until Monday, I’m hoping she will call me as soon as she sees my email. At the moment we have a carer through an agency but social care have said they will stop funding in DD’s birthday as the agency is “children’s respite service”, they haven’t even contacted me, the carer was told by the agency. I have hours of respite that we haven’t used, I’m hoping the agency has the money for those hours and will allow us to use them but I doubt it very much. I think the carer would happily be employed by me if needs be (not go through the agency) but I’m not sure I can afford to fund it.

How long before I can go for a 30 minute walk outside? I walk every day and feel I will go crazy not being able to go for my daily walk. I know it’s unlikely I will be able to leave the house for 2 weeks?

You're encouraged to go for a short walk each day. Keeping mobile is important to prevent blood clots. Just be careful not to overdo it - start with short distances, take it slow, and walk to somewhere you know you can have a sit down before starting back, if necessary.

I had a side room to myself, with en suite, because it happened to be available. The nurse said if I hadn't been going to be discharged that day, I'd have been transferred to the main ward, because a lady was coming in who really needed that room. So it all depends, really.

Heya - it's a really anxious time, I'm not surprised you're worrying, big hugs...xxx

I'll try to answer as best I can, but it's purely based on my experience and what I've been told - I'm not medical at all...

But it is a big surgery. Bigger than I thought it was, it's not a quick in and out and everything's fixed overnight thing.... you do need to take the recovery easy, otherwise it's not a case that i't'll just take a big longer or you'll just be a bit more tired - you can really do some damage to yourself. It looks like I tore something internally just through the bowel movement issues which has caused ongoing bleeding which is having to be treated - just try to take it easy. And tbh for the first week or 2 I felt so rough that I couldn't have done anything if I'd wanted to. I'm also really bad at taking it easy and try to rush everything and overdo things, but even I've had to accept this one.

Your questions:

I only have a bath at home, I’m guessing I’m not allowed a bath for a couple weeks? How am I going to keep clean?
>> I've been told no submersing in water until the all clear, at about 6 weeks. That includes baths - both for the incision itself, and the vaginal healing/risk. You might need to do warm water in a sink and flannels.

How long before I can go for a 30 minute walk outside? I walk every day and feel I will go crazy not being able to go for my daily walk. I know it’s unlikely I will be able to leave the house for 2 weeks?
>> When you feel up to it, but for me I'm only just at about 20-30 mins and it's a slowish shuffle. For the first week no chance (I had to go back to hospital a few times and that was challenging). Second week probably starting to walk further - I was bent over and shuffling, then feeling light headed. Now I can do further - hobble around the supermarket briefly (not a big shop), or about 20-30 mins walk, but probably stopping here and there due to light headedness. It's a big trauma for your body and it takes its resources to heal.

Should I buy one of those litter picking things to pick things up with? To save bending down?
>>I wondered about that, but actually not sure it would've been helpful. I can get to the floor to pick things up.

How soon will I be able to make basic meals and make DD’s lunch box? I’m going to try and buy things that I can just shove in her lunch box rather than making sandwiches 😬
>> Very dependent on your healing. Again I've had complications so I'm not the norm (although you should be aware that complications can happen), but probably took 2 weeks before I felt up to standing at a kitchen counter for long enough to make a sandwich. Then factor in you can't lift things.

When will get to discus pain medication? I’m not able to take morphine or codeine as both make me sick. I’m totally phobic of throwing up.
>>Probably at the pre-op. And again with the consultant before the surgery, and with the anaesthetist before the surgery. There's stuff they can give you to help with the nausea. I also hate being sick and they'll want to avoid it given the abdominal cut. I would mention it to anybody and everybody you can ! There's stuff they can give you via the cannula and tablets to help with the sickness. I had it while I was in hospital and should've had some to take home (but didn't in the end).

Did you get a private room or were you in a ward?
>> Private room but it was done through BUPA. Although even then, no hot water in the bathroom, the only tooth brushing I got was when my husband came in and helped me with a glass to spit into, and I got one flannel wash of my legs when they changed the compression stockings once.

But on the walking, what @Abouttimeforanamechange said is spot on - you're encouraged to get mobile as soon as poss because of the risk of clots.

Also forgot to say - I had a catheter fitted. They wanted to take that out the next day but I have quite low blood pressure and low heart rate (made worse by the pain meds) and couldn't stand up, so it stayed in for another day.

I also had a drain fitted to the wound which came out after a day or 2 - I've forgotten when.

I only have a bath at home, I’m guessing I’m not allowed a bath for a couple weeks? How am I going to keep clean?

If you're having your cervix removed then I was advised no baths for at least 6 weeks, and not until the incision was completely healed over (no minor scabbing or flaking parts.)

How long before I can go for a 30 minute walk outside? I walk every day and feel I will go crazy not being able to go for my daily walk. I know it’s unlikely I will be able to leave the house for 2 weeks?

Depends how you feel. I had to be wheeled out of hospital to the car and was only well enough to leave the house after 9 days. I got up and shuffled around my bedroom as much as I could but it was challenging. You might anticipate it being boring but personally I was so unwell I couldn't listen to anything or watch anything in the first week or so. I could hardly look at my phone.

I started walking after 9 days and initially it was a shuffle up the road not very far at all very slowly with my walking stick as my low BP and anemia made me feel like I would fall over. I was also VERY swollen so it was like becoming immediately heavily pregnant and having to carry a heavy swollen belly. It was hard work. I built back up and can now walk for 45 minutes to an hour at almost my normal pace without my stick. I'm 4.5 weeks post op and walking became much easier for me around 3 weeks post.

Yesit is a Cliff to fall off, but The "good" thing is that as adult you are not obliged to care, they have to, and if you are out if sction adukt ss hsve to find emergency care. . In this case lay it out that you cannot care neither your family for six weeks so they need to fund and help as emergency care . Is there adult respite day and overnight service ?

When you speak to your DD's transition worker you need to be absolutely firm, that you need xxx respite for 6 weeks or even you need residential respite for 2-3 weeks then xxx daily for 3-4 weeks or whatever. They will provide and it should be without a break but I know from bitter experience that unless you are really firm you slip through the net. In your specific case you need to state why you cannot do anything for her (obviously this depends on nature of disability)

I have been fighting for over night respite and they keep telling me there isn’t any suitable places for her 🙄, adult services so far have been pretty awful, keep promising me things and then the next day they tell me these things are not possible. Dd is at college 4 days a week so the Wednesday after my op she will be home all day with only me to care for her, dd won’t want to leave me but she also won’t understand that I can’t do things and probably won’t be able to get out of bed for the first 2 weeks. After 2 weeks I have dd1 home from uni, she’s going to help with dd2 but it will be Easter holidays so dd2 will need a lot of entertaining (she hates staying in) so I need someone to come and take her out each day.I have little support from her dad, he will have her during the weekend when I’m in hospital but won’t take time off work to care for her. It might be worth me paying for a cleaner for the first few weeks? Just someone to Hoover and change beds etc..? My mum is a great help but she doesn’t do things to my standards which can annoy me. She looked after dd last time I had surgery but as soon as I was home she didn’t really do much more so I had to care for dd.

I has severe adenomyosis.

Had hysterectomy 6 months after the hysteroscopy - would have been a month earlier but my mum died and I wanted to wait until til after her funeral.

I was 41. But I had it laparoscopically and was robotic surgery. Kept my ovaries but lost my cervix.

I was out of hospital 11.5 hours after the surgery! Was extremely tired for 3-4 days but back to driving 6 days later (my insurance company said driving after an operation was self guided on my insurance docs but wouldn't pay out if proven I wasn't ok to drive) and back to work after 3 weeks.

I've heard that abdominal cuts do take longer. However I had a c section with ds and was also back driving after 5 days and recovered pretty well.

I think you need to be guided by your body and if your body says you aren't ready then don't try and do it anyway .... because ....!

I also will agree with others the difference afterwards was amazing and so worthwhile having it done.

Oh and yes yes yes to big knickers.

I've never gone back from granny pants since my op 🤣

If your DD is with her dad whilst you are in hospital you may well just have to refuse to have her back.

I know that's awful and you won't want to but it may be the only option you have and as her other parent with PR he will then need to sort respite care or take parental leave.

It can't all be on you when you are having major emergency surgery.

Once she turns 18 parental responsibility does not count.
If she has capacity to sign an lpa do that but if lacks capacity it is a process court of protection deputy
Anyway regardless, ss are responsible if you cannot and if dad refuses

So
Adult ss have to sort something out
Make it clear
There will be places they know of
Yes if her dad can take her he can keep her and arrange carers with ss. Or she comes to your house but only with daily carers ss will pay for

It is short term
They can fund and arrange
Keep telling them in email you cannnot due to surgery and you need eg daily carers x 12 hours day