Hysterectomy.

[Beanfield]

Hurrah and Hallelujah. My uterus has been given an eviction notice!

30 years of being a complete bitch. Let me down twice (miscarriage and ectopic). Did what it should do twice (2 grown up DDs). Never officially diagnosed with anything but suggestions have been PCOS and endometriosis. 30 solid years of hideous periods. 30 years of being fobbed off by assorted GPs who told me it was normal to faint, vomit, incapacitate and take over my life for one out of every three or four weeks.
It’s got to the point where my cycles are just 18-20 days long, I bleed huge amounts for 5 days (emptying cup every 2 hours), overflowing, clots. Light bleeding on and off for a further 4 days. Bleeding on and off randomly mid-cycle. Puking and dizzy. Period diarrhoea, excruciating, labour style pain. Another 3 days of pain while i ovulate plus bleeding then too.
Tried everything. Mirena - I bled for 8 months then it fell out. Painfully. Pill - unhinged. Drugs - I’m allergic to the good ones and the others don’t work so well. Herbs, flowers, tea, homeopathy, diet - all bollox.

Finally saw a Dr who actually listened and agreed to whip the bugger out. Not sure how yet as apparently it's ‘bulky’ (like the rest of me) so need a scan to see how big it is. Also waiting on smear results and endometrial biopsy (which hurt like a bastard and is still hurting 4 days later).

It is isn’t it?!
She said they would need a bucket! She also said that it will be tricky when they are removed as the rest of my organs will “flop” (her words) into the large space left behind 😮
Apparently I they think I have got a lot of scar tissue and everything is stuck together from previous surgery (gall bladder removal and 2 c- sections)
Yes full cut from breastbone to pubic bone, in ICU for 24/48 hours and then on a ward for 7 days

Things I took
Slippers
Nightie dressing gown
Towel
Soap
Dry shampoo
I didn't feel up to a full shower so I did a lot of dabbing at sink.
Wet wipes.
Deoderant
Body spray
I took mini bottles of water I couldn't lift the jugs provided by staff!
Magazines
Lactulose or something similar, you don't want to be straining.
I am anaemic so took some ferrogloblin

Be prepared that with all the rummaging you may initially feel tighter and swollen in spite of the free space.
I got people to bring in a little of what I fancied food wise

Easier said than done, but go with the flow on the day. I do think whem dealing with cancer it's only when they get in there they can have a good look at it all and the joys of having to remove it all. My womb put up a bit of a battle but all got sorted.
I'm guessing you will have a spinal as well as a GA, this provides good pain relief post op. Once this wears off you'll have pain relief through the drip until you are able to take oral mefs.

It is important to mobilise as soon as you feel well enough. A member of staff should supervise you when you do this for the first couple of times
All the best

Oh Fudge that is a lot to deal with A long charging cable for phone and/or tablet would be very useful I think.

@catnidge
Yes, she mentioned a spinal block

Great list thank you,
@PostNotInHaste brilliant idea, added to my bag!

Did you have to have an enema before surgery? She said this yesterday and I’m not more worried about this than the operation ☹️

*now more worried

I did have one, never had one before but actually wasn’t as bad as I thought it would be and apparently it played quite a large role in op going better than anticipated. Easy to say and hard to do but try not to over think it if you can.

fudge I didn't have an enema so can't really help with that one.
However there are a few medical things that make me anxious. I find repeating 'This is happening because its good for me', as a matra in my head helps me through the bits I don't like.

Good advice from both of you thanks 🙂

Hi Fudge-
I haven't really got much more advice to add , some great advice already here!

I didn't have an enema, and I had to wear the lovely compression stockings for 4 weeks, whilst injecting blood thinners for 2 weeks.

I took a small squeezy robinson's fruit juice which I could easily add to the water in hospital- also a face spray which helped me feel fresh for the hours time after the op when I didn't get out of bed.

Hello, just checking into the hysterectomy club.

Like @catnidge i was told today I have endometrial cancer and will be having a laperoscopic hysterectomy in the next 2-3 weeks. They are planning to take out cervix and ovaries too. I'm 52, but 6 years post-menopause.

Unlike many on this thread I feel fit as a fiddle, no pains, swelling or symptoms, apart from two random bleeds about 5 weeks ago. It was so unexpected I went straight to the GP, so diagnosis was quick and it has apparently (hopefully!) been caught early. So it feels odd to be facing this op.

I have private health cover through work, so having received the diagnosis through the NHS I asked them to refer me to private, but BUPA were not very helpful or welcoming when I called them, and have now terrified me by telling me I might have to pay for an anaesthetist, and I am only covered for two nights maximum in hospital. If everything goes smoothly two nights will be fine, but what if it doesn't? I'm just wondering if I need all this extra stress just to get a comfier bed and better room service.....

I'm still trying to absorb all the cancer implications at the moment, but I think this thread is going to be a useful support over the next few weeks.

Hi cointreau sorry to hear your news. I also had no symptoms though when look back now I was a bit bloated, had some back and pelvic pain, a bit of bleeding etc. I put it all down to starting perimenopause!
Luckily I had a smear test due and the nurse sent me immediately to the Dr.

I did find it strange because I felt I was essentially having an operation I didn't really want but there was no choice as such.

Have you had an mri and ct scan?

Some things to consider about having op privately.

will the op be done by the gynae oncologist consultant you see?

Will it include peritoneal washing if needed?
Are they taking any lymph nodes?
Will everything be sent off for full histoligy?

I did have severe but very rare post op complications and had to return to theatre.

I'm not saying any of this to alarm you but hope it gives you some things to ask.

I'm now 3 weeks post op and feeling much better in myself.

Mentally the whole cancer thing is hard to process though.

I'm also on the General Health cancer support group if you'd like to join there.

spykid and post.
How are you both doing?
I'm OK, did take a sleeping tablet last night as struggling with night sweats and insomnia.
Doing some pelvic floor exercises but never sure that I'm doing them right.
I do have a physio op in Dec.
Managing to do lots of walking but trying to be good and not lift too much.
At what point do you think we can start lifting heavy boxes etc?

Thanks @Catnidge - useful info. Not sure I need cancer support because I'm struggling to think of it as actual cancer because the hysterectomy should be a total "cure" with no chemo or radiotherapy needed. At least, I hope so...

Yes, I had an MRI - it was booked as soon as the consultant (and I!) saw the growths on camera at the hysteroscopy. I knew straight away it was something sinister, not least because of the shoulder squeeze and sympathetic look from the nurse as I left. MRI shows the cancer is confined to the endometrium, not affecting lymph nodes or uterus muscle.

Fortunately the consultant for the NHS and for the private hospital is the same person, so referring was easy. I don't believe she does the op, but someone on her team. Yes, they do the washing thing and full histology afterwards.

At least I won't have a surgical menopause, because I'm all done on that score.

I think I might call BUPA again - I don't think I was listening rationally when I spoke to them 30 minutes post-diagnosis....

Welcome CointreauVersial and I’m sorry to hear your news. Good that there is no lymph gland involvement. What are BUPA’s reason for saying the anaesthetist might not be covered, did they say?

Catnidge with the pelvic floor exercises physio said the ones where you contract muscle, hold then slowly release you feel ,ore towards your backside whereas the shorter ones is a short, sharper squeeze that you feel more towards the front. Hope that makes
sense!

I’m not going to lift any heavy boxes for some time. I’m 8 weeks Tuesday and tried my arm exercises the other day where you have your arms behind you and it put too much pressure on stomach and made it sore, making me aware there is still more healing to be done so am going very steady on anything heavy.

I have had a hideous time since op looking back on it, not with the op but with life getting in the way of recovery. It just keeps coming at the moment so I’m feeling a bit under the weather and feel like I might be brewing a UTI. I had a sort of panic attack for first time ever last week which someone suggested might be my hormone levels dipping and migraines too. But with the extreme stress that has been going on it’s not surprising so hard to know what exactly is going on.

That's fair enough cointreau. I'm hoping surgery is all I'll need as well should get my full histology in the next few weeks.
I'm finding it hard to come to terms with the whole cancer thing. Feel like I can't trust my body anymore...

I'd definitley give Bupa another call. Do you have a date yet?

post I think the problem is I don't seem to be able to really feel a great deal with my pelvic floor I'm going to keep doing the exercises I've been sent and hope they do something. I do have a physio appt in Dec.

The arm exercise sounds intersting, I haven't heard about that one.
I've been told full internal healing takes 6 months to a year so we are both still early on with that. It's difficult when you can't see what you're working with!

Sorry to hear that life is getting in the way of recovery.
Do you think you need a trip to the GP?
Panic could defintley be linked to hormone changes.
I do think the enormity of hysterectomy as an operation and its recovery can be underestimated as well. Its a lot to go through even if it's cured the problem that was there.

Hoping you feel better soon

post Ive had a surgical menopause. Before the op I was told I was just about peri. Over the past couple of years though I have developed massive anxiety about driving on motorways or at speed. I was driving one of the children to uni and I just had to pull over and stop as I was so panicky. I'm sure this is all down to hormones.
I hope your family are good at supporting you. I did have a chat with two of my children yesterday as I think for my youngest it's been a bit of a revelation that sometimes mum's get ill and feel crap.

Thanks Catnidge, I had heard that about the internal healing too so going to go very steady.

I was pretty well into peri before op and have had a couple of moments of feeling anxious but nothing extreme. My DC have been really supportive bless them but unfortunately DD is at uni and split up with her longterm partner who she shares a flat with so does need support at the moment.

That would be fine but in the last 6 weeks I have been to a funeral of a friend, a family member of a close friend died out of the blue same day as friend. My elderly neighbour became unwell and I had to call emergency GP them keep an eye on her as her DD was away and wouldn’t come back. Then as I warned she had a fall and called us rather than using her pendant. We got her checked out at home as refused to go anywhere but had to be admitted a few days later as had broken hip and needed replacement.

Her DC then came down and they hate each other and had a big fight on drive early one morning. There were awful screams that I thought were foxes in my not awake state until someone text to say it was the neighbours and stupidly I went out instead of calling police. Had to call mental health team to deal with the son and calm the DD down, it was really traumatic. Then both of them kept texting and calling so got to the stage where phone unplugged and curtains drawn. The DS literally waited twice until he heard movement then came round but luckily that was DH who was outside.

Sent string text to the DD saying can not be involved which she acknowledged then sent me another long text about the police and Social services the next day and it was that day I had panic attack as all just came hugely on top and I am feeling a touch traumatised at this point if i’m Honest and felt like iI am being harassed and stalked. The son now gone and DH has sent email to DD saying any future contact to be via him on email.

Neighbour coming back and the DD will be there for a bit but going and until she moves neigh I will be on her own and I can not go back to worrying she needs help. So have turned Answerphone’s off which when I manage to get that done on my mobile will bring me a bit of peace. On top of this I have work I have had to do so lots of emails.

So sorry, that is long. I think though if I look at it logically it isn’t surprising and on balance although hormones may well play a role I think a lot is circumstances. I feel a bit in shock at what has happened in the space of 6 weeks.

post no wonder you're stressed . All the neighbour goings on would push anyone to their limits and I imagine that alone would be enough for the panic attack.

I can't believe how selfish neighbours dc have been. I understand they have issues of their own but...
Her family must sort out a realistic care plan for her.

I do get frustrated on MN when people say 'I don't want my DC to care for me when I'm old'. 'Or my parent is fine because the neighbours keep an eye on them.'
Who do they think looks after them, magic bloody fairies .

It must be horrible feeling trapped in your home, the hysterectomy can make you feel very hemmed in and vulnerable. All that piling on top has probably pushed you over the edge.

Sorry to hear about the deaths, I remember you going to the funeral up thread.

I hope everything manages to get sorted for your dd and isn't too traumatic for her. Is she far from home?
My ds is making plans for accommodation next year. He and his partner have decided not to move in together and I am relieved.

Sending you .

Thank you so much Catnidge, really appreciate it and I am so sorry to splurge all that here. DD is about 2.5 hours away on a good run. Someone she knows on her course has just offered her a room in shared flat so I am crossing everything I have that it’s suitable as sounds perfect.

Totally get your relief that DS not moving in with his partner and think it’s very sensible of them. I was trying to support her ex yesterday as he moved over here to be with her so really hard for him but his parents arriving today. I am ready to dash over when DD wants us to .

@PostNotInHaste - bloody hell, that's awful. Good to hear that your DH is going to be a "shield" from now on, as you need a bit of self-care. Your neighbour's kids are clearly in their own selfish bubble. Hormone levels changing will have a negative effect too. Look after yourself.

I spoke to BUPA again yesterday, a bit calmer, and managed to get some clarification. The anaesthetist IS covered, it's just that the woman I spoke to yesterday was rabbiting on about some of them not being cost-approved, or something, so I'd have to pay the difference. This turned out not to be the case. She had also said I was only covered for up to two nights in hospital, so I had visions of complications prolonging my stay, followed by a massive bill - again, won't happen. The woman spent far too long reading all the T&Cs to me, and not enough time actually listening and reassuring. Anyway, the chap I spoke to yesterday clarified everything.

It wasn't all plain sailing with BUPA because he also informed me that our company's membership had been suspended due to an accounting issue. So I went and had a little shout at HR....and it has now all been resolved. Phew. And I thought it would be simple.

Consultant's PA then got in touch, and I have a date! Thursday 14th November.

I've told my boss, although I spared him the details; the MD texted me at home to say I had their full support, and they were there if I needed them. It's a lovely company.

I told DD1 (18 currently home from uni) and DD2 (16) about the op, although I played it down and didn't mention the C word. Hopefully, they won't ever need to know that detail. DD2 was more peturbed about the prospect of having to get the bus to college. DS (20) is away this weekend, so I'll tell him later.

I'm trying to think how to occupy myself at home post-op. I'm a do-er, can't sit still for long, although I realise I might have to. Maybe I'll catch up on Netflix. I also just paid for Circuits classes up the Christmas; might just have to cancel those....

That’s good news CointreauVersial. I would have been surprised if they wouldn’t gave covered it but how crap you had that stress on top of everything else. Really good that work supportive and I think that is very sensible with the DC. Mine are same ages except you have one more in the middle !

Netflix has been a saviour , the Good Place and Shitts Creek are funny if you haven’t seen them and wants some humour. I’ve just taken up crochet as well which. With hindsight might have been helpful before though. I might take up knitting again. Good to have something productive to do from the sofa .

Morning all,
I’m 6 days post op and really struggling getting the pain under control, especially the pain in my shoulder. I know I need to be up and moving and this will help but at the moment I can’t summon up the energy to do anything but lie in bed and cry 😭
I feel so hot and sweaty (but I haven’t got a temperature) and I haven’t eaten for over a week but just can’t force anything down
I just feel so wretched 😢

Oh @fudgesmummy I'm sorry to hear that.

Have you got someone looking after you? It's really important that you eat something, because that is what will give you the energy to get up. A mug of soup, some scrambled egg, something soothing and nourishing. If it's not raining where you are, try and sit outside for a while and get some fresh air.

If you need more pain relief, please see a doctor. But it will get better, I'm sure of it. Every day that passes you have healed a little more.

Oh Fudgesmummy that sounds horrible. What are you taking for pain relief and how often taking it?

Cointreau is right, a bit of food will help but it’s hard if you don’t feel up to it. Could you try to move just a little bit every hour? As you know it will help shift the gas a bit but fully understand reedy hard to do this when you feel so rough

cointreau 14th November gives you a bit of time to get organised.

I totally understand you not wanting to tell your children. However at some point you may wish them to know about cancers in the family for their own health needs.
I know it's a horrible thing to have to think about. I regret that I don't know more about my late dad's cancer or his dad's cancer as they are looking at genetics playing a part in my cancer.
Just food for thought and I don't wish to cause you any upset over the thought of it. You must to what feels right for you and your family.

post I love Schitts Creek and The Good Place.
I haven't watched the new season of The Good Place yet, I'm saving it up.

Fudge it's still very early days. Try little amounts of food, jelly, fruit etc. Keep drinking plenty.

Sorry you are feeling so low. You have been through an enormous amount mentally and physically in a very short time.
Just getting up for the loo is mobilising. It will get easier over time.
I was sent home with paracetamol and yet given cocodamol to come home with after a more minor op a few months ago!

Do you have a named specialist nurse you can contact? They may be able to give you some support and advice.