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Abdominal Hysterectomy 30 December - what to expect

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Cagney
Abdominal Hysterectomy 30 December - what to expect

*edit: got a date 30 December*

It's going to be a simple hysterectomy BSO so they'll take the tubes and ovaries as well, thankfully that's it. Fingers crossed.

Also my consultant said that for early stage cervical cancer, there's research that suggests people do better if they don't have keyhole surgery so I'm having the open surgery, and I'm fine with that. I'm also 57 so past the menopause thankfully.

I know it's going to be hard going - it's amazing how the prospect of a hysterectomy suddenly makes you really aware of the muscles around your abdoment and pelvis! Constantly thinking "that'll be hard, or that's going to be too much for me..."

My hubby is fantastic, I'm so lucky. He's going to take a bit of time off work when I come out of hospital, and we've both been working at home anyway since March. He's fully prepared to wait on me hand and foot! And I've already had two LLETZ under general anaesthetic, so we both have an indication of what to expect at least for the first week.

But I'd really love to hear from anyone who's had an open hysterectomy before, what to expect. How long am I likely to be off work? I work for a charity, so spend the whole day sitting at a desk. Currently full time, though I'll drop back to 3 days in March. My employer has been brilliant, and I've kept them and my colleagues informed so they can try and plan round it too. The two LLETZ operations so far, and the consultations have been a massive roller coaster already - I came back from my last consultation - no surprises at all but still I collapsed and bawled my eyes out the whole of the day! I don't doubt I'll nose dive again when I get my date and when it approaches. And presumably afterwards. 

So if anyone feels up to sharing their experience, thank you in anticipation xxxx

High grade CIN and CGIN, endocervical adenocarcinoma grade 2 stage 1.

Abdominal hysterectomy BSO 30 Dec 2020.

Jazza
Jazza's picture

Hi Cagney

I had a laparoscopic radical hysterectomy so my experiences are likely to be quite different to what you might go through. Have you had or will you have any lymph nodes removed?    My radical hysterectomy involved having  the top third to half of my vagina removed which I guess won't be happening to you?  Sorry - I'm asking questions rather than providing answers but it helps to know some of the details so can share relevant experiences. 

Hope all goes well for you.

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6 chemo, 25 external radio, 2 brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Cagney

No it's just a simple hysterectomy BSO, so just the uterus tubes and ovaries. No lymph nodes. There's been no mention of the vagina at all.  But I'll be having open surgery not keyhole so I'm assuming the recovery is likely to be slower.

High grade CIN and CGIN, endocervical adenocarcinoma grade 2 stage 1.

Abdominal hysterectomy BSO 30 Dec 2020.

Jazza
Jazza's picture

Not having lymph nodes removed means you shouldn't be at risk for lymphoedema which is a plus.  Laparoscopic surgery generally results in minimal incision site scarring and quicker recovery times but it's the long term result that is important.  I  gather that laparoscopic surgery is less popular now than even just 3-4 years ago when I had my op.  When I went for my treatment plan consultation in 2017 the surgeon was obviously very proud of the hospital's Da Vinci robot machine that is used for some laparoscopic surgeries.  Since then papers have been published to show that open surgery results in a better cure rate for cervical cancer than the laparoscopic type. 

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6 chemo, 25 external radio, 2 brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Cagney

Yes there's been a big study about it two years ago I think. There was a thread on here about it in 2018. Outcomes for early cancer were significantly better with open surgery than with keyhole.

Strangely I did wonder myself without any medical knowledge and then when the consultant said they were recommending it I was fine with it. She said they think it's something to do with the squeezing. 

So yes just wondering how it has been for others. Never had surgery before. I'm liable to expect too much of myself I know, so being unable to do things will not be easy for me. And I'm bothered about missing work and leaving colleagues in the lurch so I'm keen to plan as best I can. But I've no idea how long I'm likely to be off.

High grade CIN and CGIN, endocervical adenocarcinoma grade 2 stage 1.

Abdominal hysterectomy BSO 30 Dec 2020.

Cagney

Well in case anyone else is reading this looking for the same information, I've been chatting to a nurse on facebook who had an open hysterectomy and she's shared her experience with me which has really helped.

Firstly - pain of course. She described waking up on a morphine pump and you have a catheter (which I was told).  And pain can be managed. I'm not looking forward to it. But I'm not the only one to go through this. 

She said recovery time is three months minimum. And she said  You won’t be able to lie flat after and will need help getting out a chair, if you need to cough, sneeze fold a pillow in half and hold it against your tummy, it does help." She said I'll need help getting up out of chairs for a while. I guess different people will recover their strength and mobility at different rates?

No baths of course, she said her incision was glued with surgical glue and the hot water isn't good with the glue. 

Obviously everyone's different - she had a bigger operation than I'm due as well, but it's still helpful to have some insight into what to expect, and to be able to plan - for instance I'm thinking of getting a V pillow - though my sister - a former OT says I would be better sleeping in a chair with my feet up as the chair holds you up better. 

So I'd love to hear from anyone who has any other insights or tips - and I hope others facing an open hysterectomy also find this helpful too. 

Just got to get through Christmas while I wait for a date...

High grade CIN and CGIN, endocervical adenocarcinoma grade 2 stage 1.

Abdominal hysterectomy BSO 30 Dec 2020.

FeelingTheFear

Hi Cagney

Sorry I missed your post, I am now fully back in the throes of working 45hr a week and I dont pop on here as much as I used to do. I had an open rad hysterectomy with lymphadenectomy in mid May, and have posted a lot of detail about it, you can find some of my older posts if you click my username.

It was pretty tough going to start with for sure, by week 8 things were a lot better, to the point I took a 400km train journey alone to visit family. I was back to work part time by week 12. By week 18 I was working full time again. 

I remember reading that it can take 6mths before starting a day where you don't think about the surgery you've had, and thinking, I can never imagine not waking up and immediately remembering this nightmare. But it was true, its now week 28 and I realise that it is no longer the first thing I think of when I wake up. 

Its great your husband will be there to help you when you come out. I was able to sleep in bed next to him but with cushions behind my shoulders and under my knees. I do recommend you buy a squishie pillow called a Cushtie, if you search this word it will bring up my hysterectomy shopping list which might be useful

All the best for your surgery, if you have any specific questions please let me know or drop me a message  x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

KittyBoo

Hi Cagney

I had my radical hysterectomy on 12th November... the toughest thing for me was being on the ward, I was confined to bed on a catheter and can honestly say that I began to struggle with a lack of normality in my life.

I was allowed home 3 days later and slept for 15 hours straight, hubby had to sleep in the spare room for a week simply because he was scared of bumping me in the night. The 1st 2-3 weeks were slow progress the simplest things were tiring and my abdomen ached alot, I bought a cushtie cushion to support my tummy when sleeping and sitting ... fabulous!!! I'm now able to drive and walk round the supermarket although more than 40 minutes is very tiring,  I have to attempt that if I sit too long I get pain in my abdomen so I tend to get up periodically for a wander.  I haven't return to work as yet simply because I work with teenage boys and my HR and line manager don't want me to risk an infection. I'm now having radiotherapy and chemotherapy to ensure that everything was indeed caught, don't want anything lurking unseen 

Lots of hugs 

Karen x

Cagney

Thanks for sharing all that Karen! It's incredibly helpful to hear other people's experience! 

I'm hoping I don't have to stay in too long! Mine's only a simple hysterectomy, and they take the catheter out the next day and get you up and moving, all being well. They said 2 -3 days but of course, that depends on it all going well and me getting up and about and using the loo as soon as possible! I've filled my phone with audio books. I love knitting but I'm not sure there's any point taking my knitting in because while I have a canula in my hand I won't be able to knit, so I don't think I'll bother and if I drop a needle it's just a nuisance for the nurses. My husband's birthday is 3 Jan so I absolutely have to be home by then! If I'm not though, for any reason, his present is wrapped and hidden behind the sofa so I'll tell him where it is. But I'm sure I'll be home by then. He's booked some time off work too, but works at home as well anyway.

My work have been fantastic, I've blocked out 6 weeks because that's the figure I hear most people say it takes to recover, but I've been working from home anyway since March so we'll see how I do. They'll let me do a phased return when I'm ready, and have said they'll be led by me! I might have to get my hubby to talk to my boss because the second I have a good day I'll think I'm fine and I'll push myself! He'll be more likely to make me pace myself. But I'll be able to try and stop and try again if I need to. So that's really lucky. My job is mostly sitting at a desk sending emails anyway, not too onerous, though I normally work p/t but got increased to f/t in Sept, till March. I can imaging sitting at my desk 7.5 hours a day will be gruelling to start with.

 

We have a cushtie which I've dug out from under the bed where it was collecting dust! I ordered a wedge pillow and a V pillow before Christmas which are under the bed. I'll make up the spare bed incase one of us has to sleep in there. Hubby has had a go at changing my surgical stockings! My alarm is set for 5.45am for the morning - I have to be there for 7am.

So I'm all ready I think. Nothing left but to go in and get it over with.

I'll come back and tell everyone how I got on and if anyone else is facing a hysterectomy I hope it helps them as much as it helped me learning from the ones who went before. 

 

High grade CIN and CGIN, endocervical adenocarcinoma grade 2 stage 1.

Abdominal hysterectomy BSO 30 Dec 2020.

FeelingTheFear

Good luck cagney! You are absolutely ready for this! Xxx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

More Information

Treatments for cervical cancer