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.

This.

I also have a bulky uterus (due in my case to two large fibroids) with a history of postmenopausal bleeding, polyp formation and endometrial hyperplasia without atypia.

At one point, two years ago, I was thought to have a uterine mass suspicious for malignant leiomyosarcoma because of what a radiographer had written in an ultrasound report. Because it is difficult for clinicians to differentiate 100% between a benign fibroid and a leiomyosarcoma (an aggressive uterine tumour with a poor prognosis) without doing a hysterectomy, I was transferred to a gynae-oncologist and it was recommended that I had an urgent hysterectomy. They would have removed everything via a vertical abdominal incision. I am also a carer and I also had another, unrelated surgery lined up which would have had to have been postponed to prioritise the hysterectomy.

I was then given a CT scan and an MRI scan. The multidisciplinary gynae team then considered, in light of the MRI report, that the "suspicious mass" was more likely to be one of my longstanding and now degenerating fibroids. They agreed to a conservative approach to manage the bleeding and reverse the endometrial hyperplasia and I avoided a total hysterectomy and was able to have my other planned surgery.

I am very concerned that no-one has apparently explained to you why they are recommending a hysterectomy, whether there are any alternative treatments and whether or not they consider you have a risk for cancer and if so, based on what tests and biopsies, staging etc.

As Mygreedylab has said above - you cannot give informed consent if you do not understand why a rapid hysterectomy is being recommended.

When you have your pre-op assessment, one of the nurses should go through all this with you. (They will also want to know whether you are a carer and how you will manage post-op if you have no adult living with you.)

But you should have been told before your pre-op and I think you should establish this before your pre-op as there may be alternative ways of managing/treating your condition. Are you in the UK and having NHS care?

In the last two years, I have had one internal and two external ultrasounds, two MRI scans and a CT scan. I was recently found to have a small ovarian cyst and that is being monitored 4-6 monthly via internal ultrasound scan. (This is UK NHS.)

Why have you had no scans?

Do you not get copies of follow-up letters that are sent to your GP which explain their findings and their treatment plan?

If not, phone your consultant's secretary and ask for these to be emailed to you.

I went in on Wednesday for a larascopic hysterectomy which then turned into open surgery. I've just come home from hospital.

I was totally unprepared for open surgery. You need soft waistbands. I am wearing pull up pants because I am bleeding. Mentally I'm struggling with the fact I look like I've given birth. Expect back ache as it compensates for your abdominal muscles.

Hospital was a sauna. It's noisy. Take earplugs. Take an eye mask to help with sleep. If you're going in on Friday then the physio team probably won't be there to get you up and mobile. Make sure you get a nurse to help you, do not try to do this yourself. Remember your phone charger. Take post op snacks. I didn't get into the ward until late and missed any sort of food offering until breakfast the next day.

You will need help at home. You will need to have someone at home and to get you home.

I can't take codeine either. I made this very clear to anyone who asked. Currently stocked with tramadol, paracetamol and ibuprofen at home. Had fentanyl via cannula in hospital.

Hope it goes well. It's major surgery and needs to be treated as such!

Undecided45
Hope you have a speedy recovery, that must have been a shock waking up to find out you had open surgery. I am dreading the first few days after and being stuck on my back (I’m a side sleeper), I have ordered a v cushion for in my bed to help me get comfy but I’m sure I will be in tears and an emotional mess for a while as I hate being unwell.

I have emailed my gp this morning asking for my medical notes as I’m so anxious due to not being told exactly what’s going on. I’m waking up crying every morning and crippled with anxiety.

My mums going to move in for a week to help me and to help care for dd2 ,Dd1 will be home after 2 weeks to help out. I’m hoping to be a bit more mobile by then.

I am terrified, I’m a bit of a wimp when I’m unwell or in pain. I have a new (is) DP, but he hasn’t really been around dd so I’m wary of letting him stay over and help, he’s getting frustrated with me and I’m probably pushing him away, tbh I don’t think I can handle him being involved whilst I’m in recovery.

I have had scans in the past and a previous hysteroscopy but this was a year ago (the scan, hysteroscopy was before my ablation). I have my letters from my previous appointments but not from last weeks as it usually takes a few weeks to get them. I have emailed my gp to ask for my notes if they can access them. I have also asked why I haven’t been scanned.

Hugs - that must've been a massive shock !

On the tummy - I was in tears - I looked like Humpty Dumpty. I'm a few days ahead of you (2.5 weeks) and the big tummy has gone down - it is still a bit sticky outy I think because the muscles aren't doing their job yet, and it's a little swollen internally, but the big round tummy has gone.

I have what my DH is calling a pizza roll, still above the scar - I'm HOPING it is still swelling and it will go down in time! The internet is a bit divided about whether it does or doesn't, but I'm crossing my fingers.

You're allowed to be a wimp and miserable about being unwell xxxx

I am also a side sleeper and it was difficult - I found I had to be fairly propped up with a pillow under my knees for the first few nights at home. Then I managed to get slightly tilted to the side with pillows stacked along my side to lean on - like lying on my back with my knees bent, but they were lent over. Now I can lay on either side, but I have to have pillows or something supporting my tummy. But it's getting better day by day.

I understand not wanting DP around - I love my DH and he loves me, and given my complications and needing ferrying backwards and forward to the hospital a few times, and pharmacy pick ups etc., he's been essential, but I've been very inward focused and not able to think about him at all. He's really just been a person who's been there to support me. Now I'm better I can think about him too (it's been really tough on him as well), but I can understand someone who's not so established in your life, just being too much to deal with ! But have a think about what he could do to help - could he pop in once a day or twice a day and sort out dinner, or lunch, or a morning tea and breakfast and help you clean yourself? Practical stuff? Even if it's that he could do the washing up or some laundry?

DP isn’t really being supportive in anyway. I haven’t seen him since a week before my hospital appointment, he can’t drive at the moment but has made no effort to come and see me (expects me to go to him).

Feeling pretty awful this morning, mornings seem to be the worst time of the day.

I have spoken to my gp and he has advised I call the hospital and ask for an explanation but when ever I call no one answers. GP agreed that they should have explained exactly why I was put through as an urgent case and what they suspect is going on. I should have been offered a scan and conformation that my uterus is too large to be removed by keyhole. I will try and call them again today but if I can’t get through I will have to wait for my pre op on Thursday and try to get someone to talk to me. I am exhausted, adult services are not replying to emails so still nothing in place for dd2.

It just seems bizarre @Lovemusic82 that you don't know why you're having this (major) procedure.

Mine was open abdominal (not vaginal) because of the size of the uterus - I guess it doesn't take much for it to be too big to come out that way - my fibroids weren't massive. One at about 6+cm, plus multiple small ones, plus adenomyosis, plus some ovarian cysts (female anatomy is great isn't it !).

I was initially shocked because I'd assumed vaginal, but on a bit of research etc., the risks of certain complications are way less with open abdominal (prolapses), and because they have much more room to move as it were, it can result in better outcomes for certain things.

The recovery is slower I think - particularly for the first 2-3 weeks - but I accepted that for better longer term outcomes etc. Plus it was the only option given the size.

It sounds like open for you because of the size, but they don't seem to be telling you what they suspect, or doing any scans to look further. Which is weird. FWIW I had an MRI which showed the fibroids, but the adenomyosis wasn't seen until after the op when they did the lab work on what was removed. Apparently my uterus was "obliterated" - just love the terminology they use !!!!

Can you keep trying to call and get a phone appt at last to discuss? It seems you're consenting to something without knowing why?

I'm on Day 19 now and I'm much much more mobile now. I still can't drive, and I'm forbidden from lifting anything beyond about 2kg - it's about avoiding that pelvic pressure - as I keep reading - you only get one chance to recover so do it properly! You don't want to be re-admitted.

For context (I probably saw this earlier) I tore something internally after surgery, just by having constipation (it was severe and an impaction but still......). So don't be thinking you can "tough it out" and get on with life. I had these 2 complications, so I don't know how I would've felt without them, but certainly the first 2 weeks were just a blur and I couldn't have even thought about doing anything.

Sorry about your DP :(

Thank you.
I have had a call and have had my note read out to me. I have been offered a consultation in clinic on the 4th of March (earliest they can see me).I have been told that because of my symptoms and the fact they were unable to take a biopsy that they are treating as Cancer even though they don’t know it is. My uterus is measuring the size of a 14 week pregnancy, but I’m not sure how they can know this just from feeling around? So it’s the size of a grapefruit which is too large to be removed vaginally. I just don’t understand why I have not been offered a scan? Surely if it was a fibroid it would show on a scan and it would out my mind at rest?
So the phone call has just made me more worried. I am neurodiverse so I need people to tell me things as it is. Them saying ‘something bad’ instead of saying ‘cancer’ doesn’t help. Why are people so scared to say ‘cancer’?

pretty sure me and DP are over. He can’t put the effort in to even come and see me.

Really sorry about your DP :(. What a shame although at least you're seeing it now, not years down the line (trying to flip to the positives here!)

A bit of a jumble of info and thoughts below but hopefully it'll help.....

I am really not medical at all, but just based on my own reading / research and experiences.... I think it's hard/impossible to tell whether it is cancer or a fibroid or something else just with a scan. My adenomyosis wasn't detected in the MRI, and the fibroid position wasn't noted, it wasn't noted or seen that the bladder was stretched over it, it wasn't noted or seen that it was embedded into other organs and caused some issue getting it out, and they couldn't confirm 100pc until post-operative lab work that it was a benign fibroid and not something else. Plus if you think about it - if you have an MRI it'll just say "yep there's a big thing there" and you'll still need the surgery. And all you've done is delay it, which if it does need to come out quickly, isn't a good thing to do.

They can feel a really surprising amount of stuff just by prodding your tummy - I'm always amazed. To me it's just a soft squishy blobby tummy! Even the GP (I mean no disrespect to GPs but just making the point it's not a specialist) could feel my "bulky uterus", let alone someone who's primary job is to investigate and treat things in this area, and does it all day in and out.

So if they can't take a biopsy, but they can feel there is something there and they know what size it is, I would be reassured in a way that they're treating it quickly, and not passing you off and ignoring it.

So logically.... someone skilled has felt something large and can tell roughly how big it is. They can't biopsy it to rule cancer out (it could be any number of things - fibroids like you say), so they've decided to whip it out quickly just in case.

I had cancer investigations for something separate about 18 months ago and I learnt that a way to think of the "urgent cancer pathway" is more often than not, about ruling out cancer - not ruling it in. If that helps you at all.

My fibroid was smaller - about the size of a large plum/peach - plus in an awkward place plus other smaller fibroids. But even just the plum/peach was too big to get out vaginally, so a grapefruit would be.

Also think - when they went into get mine, they discovered the fibroid was embedded into other organs and needed quite a bit of dissecting and additional internal stitches and stuff to happen before they could get it and the uterus out, to the point the surgery took 2-3 times longer than the minimum length that op can take. All easier to do with an open surgery and space to move.

Plus - if it is cancer then the quicker they get it out the better (a friend of a friend recently was diagnosed with ovarian cancer which was only discovered during a scan for something else - they couldn't tell if it was cancer until they operated. It was, they did a hysterectomy, and she doesn't need any follow up treatment - the surgery got it all). If it isn't cancer, then yay and you've got rid of something that shouldn't be there and could cause problems and grow.

I've just come out of hospital after an admission for severe bleeding. Best thing I took was a Halo eye mask (about a tenner on Amazon) which really does properly block out the light but is shaped to not squish your lids and lashes. Wax earplugs might be a thought too.

dgirluk thank you that’s reassuring, I am hoping what ever it is that it’s contained in my uterus, they did mention that it could be caused by scar tissue growing after the ablation though I would have thought that would have shown up on my scan last year. Gp is saying it’s unlikely to be fibroids because there was no sign of any on my scan and they tend to grow quite slowly (but not always). I guess I will just have to try and make peace in my head with not knowing until after surgery, I know I’m lucky to have been offered surgery so quickly but if I could I would have it out tomorrow despite not being prepared. I think the wait is what’s making me so anxious.

in a way it’s better that DP is out of the picture, it’s one less person I have to worry about as he was turning all this around on himself and how it was effecting him 🙄. I have good friends and family to support me.

margegunderson thank you, I have ordered a eye mask and will be taking ear plugs or some headphones maybe for my music. I struggle hugely with noise and bright lights. Last time I stayed in hospital it was pretty awful and I got no sleep at all. I had my letters come today and it sounds like they plan on keeping me in one night and then sending me home but I can’t see that happening, I stayed in 2 nights after having my appendix out because my pain wasn’t under control and I wasn’t walking around enough.

I had TAH due to a massive fibroid. For the first week I was a mess, slept all the time and very sore. Week 2 I was up and about a bit. Week 3 I went outside for short walks and felt more myself. By the end of week 4 I felt pretty good. Week 5 I hosted Christmas for the whole extended family as usual.

During that first week two i relied on a small step to put my feet on when I went to the loo as I felt really uncomfortable otherwise. In bed I had to be wedged in with pillows to get comfortable as I couldn't lie totally flat and needed my legs bent a little to get the right angle.

Re SS - I'd contact both Adult and Children Services pointing out they have failed you both by not organising the transition in a timely manner. It is their responsibility to ensure continuity of provision and there is no way Childrens can withdraw support if AS are not stepping in.

We had the exact same thing and after I put in a joint complaint to both departments at the same time I also emailed the Director of Service. They absolutely cannot just supporting DD so don't be robbed off. I'm sorry you have this drama at the same time as your own worry.

How're you doing OP @Lovemusic82

Just a bit of an update for anyone that’s still following.

On Tuesday I went for a private scan as I wanted to know what was going on, I was angry that the NHS did not offer any further tests and were happy just to send me for open surgery (abdominal hysterectomy) without checking in more detail. Anyway my uterus measured at normal size, not the 12wk pregnancy size the consultant said it was measuring at. I have several cyst in my uterus which suggest adenomyosis, my uterus lining doesn’t look right but this is probably from the failed ablation, nothing obvious to suggest cancer but obviously can’t rule it out, my ovaries look fine. I contacted PAL,s for advice as it’s hard to get hold of my consultant, they made contact for me and I have a consultation next Monday to discus what happens next. I want surgery but I want vaginal hysterectomy, now I have proof my uterus is normal size I am hoping they will agree that this is the best surgery option.

The past 2 weeks have just been awful, my heads a mess, I’m angry with the hospital for making a mistake with the size of my uterus and for scaring the sh#t out of me. If I hadn’t have gone for the scan they would have put me through open surgery when it’s not necessary. Hopefully now I can vaginal hysterectomy which has a much shorter recovery time. I have lots all faith in the hospital but I don’t want to delay surgery because I have plans for the summer and because I’m also in constant pain so now I have to go ahead at a hospital I no longer trust.

@Lovemusic82 i'm glad you had the scan to give you more information. Do you have anyone you can take with you to the appointment or can you ask to record it so you can hear it back later? there may be particular reasons why the surgeon would still choose to do an abdominal rather than a vaginal - this includes if cancer is unable to be excluded, so i don't want you to be thrown if they still wish to do abdominal. Perhaps write a list of questions for the best case scenario ie. vaginal versus the worst case ie. abdominal?

I don’t have anyone to take with me sadly. I know there’s still a small chance they will say I need abdominal though I don’t see there’s a viable reason for it. They wouldn’t have said they were going to leave my ovaries if they really thought it was cancer? I am hoping my smear results will be back too which will give my cervix the all clear. I know vaginal may not be possible but key hope would be. I will be keeping an open mind and I’m not getting my hopes up that I will get the best outcome (vaginal hysterectomy) but I am hoping they will consider. Most of my symptoms can be put down to adenomyosis rather than cancer and there’s proof that I do have Adenomyosis my scans (the cysts), due to my age and family history (no cancer) it’s very unlikely I have cancer.

Once this is all sorted out, I would suggest investigating the care situation for your daughter further, probably with a solicitor specialising in community care and offering legal aid as you can probably get legal aid in her name. I'm no expert at all, but for what it's worth my understanding of the Care Act is that there shouldn't be an assumption that family put their lives on hold to provide free care for adults. It may be that with a bit of pressure from someone quoting the law at your local authority they find they can offer a reasonable amount of respite care and help.

You can find solicitors through this - https://find-legal-advice.justice.gov.uk/

OP I’d be contacting the surgeon urgently and preparing a list of questions. First on the list is WHY is this so urgent??!!

It’s very concerning to me that you say you have been ‘made’ to sign consent forms. If this is how you feel this is consent under duress and this is illegal. If you don’t really know why the surgery is being done so urgently then this is not informed consent.

It seems like you’re feeling positive about this and feel it will improve your life which is great, but ultimately this is major abdominal surgery with organ removal and there are risks involved. This is absolutely not something you should be rushed into (especially with your social history - your daughter, needing to arrange support etc, living rurally) without being given all the information and time to sort things out.

I know it can feel difficult to push with doctors but I really feel you should be advocating for yourself in this instance. Or use your mum/friend for support if needed.

All the best.

I’m so sorry I’ve just read your updates - I was so horrified by what you’d said I jumped the gun!!

Sounds like you’re advocating for yourself just fine and I’m really glad. Don’t let yourself be bullied at the consult.

Again all the best!

Thank you. I’m so glad I booked the private scan. Thanks to the ladies on here for saying I should be asking more questions, I did try to ask more questions and asked my consultant why I hadn’t had a scan and was just told that it would bake no difference because my uterus was enlarged and they were unable to get a biopsy so we’re treating it as possibly cancer. Was told my uterus was too large to be removed vaginally (which wasn’t true).

I am petrified as to what will happen at my appointment, my appointment isn’t with the surgeon and I feel my surgery should be the surgeons choice rather than the gynaecologist. I scared that I have to go and tell the gynaecologist that she was wrong and my uterus is normal size, I’m scared they will still only offer me abdominal and I’m scared they will cancel it completely.

Why do you think the gynae doing your consult is not the surgeon? You should see the surgeon or at least their registrar.

I know it’s really hard in these situations but it’s your body and no one should be doing anything to it you are not happy with. Could you ask if a nurse specialist could be present in the consultation?

You can also always ask for a second opinion.

I do honestly know how hard it can be to advocate for yourself especially if you are in there on your own. But it’s your life and your body and you have to live with this for ever. I’d be trying really hard to get someone in there with you. Anyone - a neighbour, colleague, whoever. Someone bolshy preferably who will not let them fob you off but will support you in getting the info you need. But be very clear about what you want to happen - what would they need to say/do to make you feel comfortable about an open procedure? What info do you need (when I say info that can be a repeat scan) to feel like you will be able to live with this decision? Do you need a second opinion to feel comfortable?

Ultimately you’ve got to bloody trust the person that’s cutting into your body, whatever way they do it.

I have the surgeons name but I don’t think I will get to see him until the day of my surgery, I have spoken to his secretary but she just arranged the consultation with the gynae consultant.

I can’t think of anyone I can take with me, it’s too late for anyone to take time off work, my mum is going to be sitting with dd as she’s home on a study day.

I have been doing a lot of research and I feel I can have a vaginal hysterectomy as the chance of cancer is pretty small, it’s a risk I’m willing to take over having a much bigger surgery. I have my scan results/pictures which I will take with me. I will ask that the surgeon takes a look at all the info so he can decide if vaginal is possible.

My surgery date was changed a few days ago and I was told this was because the surgeon wanted a longer slot in surgery (probably because he was going in blind with no scan?).

The private company that did the scan were really good, they explained everything they found to me and they were shocked that someone could say my uterus was measuring at 12wk, I am pretty slim so it was pretty obvious as soon as I led down that it wasn’t going to measure at 12wk. I have photos of the cysts that were found, proof my ovaries are fine and proof that there’s not really any sign of any obvious cancer. The only symptom of cancer was the fact I spot between periods but I have had this for years and previous biopsies have been clear.

In case it's helpful - remember even with a vaginal hysterectomy, the internal cuts and dissections are still the same. So the recovery needs to factor in that healing regardless of abdominal vs vaginal. So it's still 6 weeks before lifting stuff, then gently introducing thing sand building up, and 3 months for full healing. Internally.

What a shitty situation I'm sorry you're going through it. I would certainly be asking for an appointment to go through the scan results vs what they've told you. And discussing the abdominal vs vaginal in the light of those results. Is there maybe another reason they want to go in abdominally? My consultant said typically the 1st 2 weeks recovery is slower for abdominal vs vaginal, and then they tend to level out.