Radical hysterectomy help?

Hi

I’m 51 and was diagnosed with 1B2 cc on 5th April. Im booked in dor surgery on 16th May.

Those of you that have been through this, what can you tell me about the recovery? My husband works away a lot, and my lovely mum is happy to come and stay to help me and get my teenage daughters to school. I dont want to put on her too much - my husband is a great cook but his idea of supporting me is going to work to make sure we still have a business.

Realistically, how long will i need someone to help me at home? Im just trying to go through the calendar and plan ahead.

Thank you. :pray:

Hi @Raquel, I’m so sorry that you find yourself here.

Do you know how the surgery is being performed as this will have a big impact on your recovery.

I had open surgery, I wasn’t allowed to drive for 6 weeks and really was only just ready at this point. The first 2 weeks or so I could just about get to and from the bathroom, move around the bedroom, I did go for a short walk at 2 weeks but ended up going straight to bed, the next morning I woke up having bled and had to rest for a good few days. When they say it’s major surgery and don’t over do it, no lifting etc they know what they’re talking about. I’m 9 weeks post now and still get pain and weird sensations, can’t lift anything too heavy, move slower and need to rest.

Hi @Raquel

I had a hysterectomy the same time as alwaystheweekend, like she said do you k ow if you’re having open or laprascopic?
My journey has been different (read my story lol) and I had open and laprascopic surgery I had it on a Wednesday and was home Friday, but as always said the first few weeks you really need to rest and sleep! We have a toddler so needed a lot of help!
I would suggest getting all the help you can do there is no pressure on yourself, we all seem to recover differently but I was very naive in the recovery time! Assuming I would be back rushing around in a few weeks!
It’s all very doable, I’m doing a lot more now but like always, have niggles etc and know when I have overdone it x

Hi @alwaystheweekend and @Gizzy Thank you for your advice. I’m having open surgery too.

I think I’ll book mum in for as long as I can, and I can always let her off if I am feeling better. I tend to be rather impatient and always on the go, so I will have to learn to slow down! I’ve already got a website to finish while I’m recovering and just decided to arrange a three day antiques fair next year… From what you two say, it probably isn’t realistic to think I can get that done during the next month. :smiley:

Hi Raquel,

I had an open radical hysterectomy at the end of January (2023). I was diagnosed with stage 1b1 CC. My surgery took around 6 hours (that was mostly thanks to two previous c-sections, etc) but was successful and I knew nothing about it! I accepted all the pain medication on offer before and afterwards and that was great. Don’t be afraid to buzz the nurses/staff in the hospital if you’re in any discomfort and feel like you need something to help with the pain. On my second day in the hospital/post-op they forgot to come to me on their rounds so I suffered in silence until my husband arrived to see me that evening. Don’t do that!!!

At home my husband helped me to wash and dress. I would have struggled without him if I’m honest. I stayed on top of the pain with regular pain killers. It was tough to get around and frustrating but I eventually accepted that it was what is was and decided to make the most of having a rest and planning some nice things for when I felt better. It was also nice to have visits from people I hadn’t seen for a very long time! My main advice is accept any offers of help! People want to help where they can but are often unsure how they can, so don’t be afraid to ask and accept. It will please both you and them and you will need it - you must take your recovery seriously. I didn’t lift anything heavy until I was well over 12 weeks post-op and even now I am still careful! Same with bending over - buy yourself a litter picker. Absolute godsend! I didn’t know how clumsy I was until I couldn’t bend down any more.

Take heed in the advice of medical professionals and others and listen to your instincts. Do not rush your recovery! It will take as long as it takes. Enjoy the time to relax and have daytime naps! Personally, I didn’t feel safe to drive for a long time and have only just started to. However, I unfortunately did get sepsis and had to have a second surgery as a result, so I was probably longer with the driving than most.

Just give yourself time to heal - both physically and mentally. Booking your mum for as long as possible sounds wise. Her company if nothing else will certainly help! Remember you’re not alone, lots of us here understand. Sending you very best wishes for your op.

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How are you doing?

Thank you, @Sal3023 Sounds like you had a really rough time!

Thank you, I’m doing a lot better now. All of us here have had a rough time, so it’s nice to be able to share our experiences. Hope all went well with your operation and that you’re feeling okay. X

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Well, surgery was last Tues (so im 9 days post op now). I went to theatre around 2.30pm and woke up at 10pm! It turns out that i had an infection in my womb from the Lletz. My surgeon said everything was very inflamed and stuck together, :nauseated_face: so it was no wonder I’d been feeling so lousy!

Aftercare wasn’t great, pain relief was given sporadically, catheter bag overflowing, blood pressure was very low, passed out and had a seizure the first time they got me out of bed - thankfully a friend was with me and she stopped me from falling out of the chair onto the floor. I was very glad to be sent home on friday, after 3 nights in.

I had open surgery and the wound is glued. That isnt giving me much pain. Most of the pain i have is above the scar - the surgeon said its bruising to the muscles. I seem to get bigger and more bloated through the day and its so uncomfortable.

Im a bit worried about swelling below the scar too, around my groin and pubic bone. Its full of water retention and is tender to the touch. Well, everything is tender to touch!

So im wondering if this normal for 9 days out or is this more of s lymphodaema thing? Is there anything i can do to help my lymphatic system? Any tips gratefully received. :pray:

The good news, i do generally feel a little better everyday and I’m moving more easily, plus i got the wonderful news today that i have clear margins and no more treatment is required. Really feeling blessed and like I’ve dodged a bullet.
Thank you go eveyone for your advice and suggestions pre-op - the lactulose has been a godsend! :pray::pray::pray:

My goodness! Poor you! That sounds awful. I’m sorry you had such a bad experience. To be honest, I wasn’t thrilled with my after care either. Couldn’t fault the surgical team, etc but terrible on the ward afterwards. Glad to hear you’re coping better now, but keep going really steady.

I’m unsure about the swelling you’re experiencing. Perhaps you could call your specialist nurse to ask for some advice? I had tightness/swelling and tenderness to the side and lower part of my tummy button, which obviously turned out to be the infection. Not saying that’s what it is, but you can never be too careful. Definitely ask for a check up if you have any concerns. Even your local nurse should be able to see you and settle any concerns you may have.
Have you been doing the exercises for you lymphatic system? Breathing, stretching feet, etc? I was told to do them at least twice a day…I can give them in more detail if you need them. Maybe that will help. Just let me know.

Amazing news regarding your clear margins! Thank goodness and hooray! Big congrats! Definitely plan a celebration for when you’re feeling more able, Something to be celebrated for sure!

Hi @Sal3023

Thanks so much for you quick response. :blush:

Absolutely - the surgical team were amazing and I’m so thankful to them. Lets focus on that!

I wasnt given any advice at all on lymphodaema exercises i did find a few breathing meditations on vagus nerve which stimulates the lymph system apparently, so ive been doing that, but only once a day. Maybe i should be doing it more?

I think i will call the specislust nurse team today, see what they have to stay.

Thank you @Sal3023

X

No probs!

Yes, I’d give them a call. They may be able to settle your mind if nothing else! I was told to do the usual calming breathing (in through the nose, out through the mouth) x5 times; then good old button clenches x5; then tense the thigh muscles x5; stretch your feet up and down x5; rotate feet clockwise and anti-clockwise x5 each; then end with (you guessed it!) x5 more breaths. You can easily do it sitting down and twice a day. Hope that helps.
Keep doing whatever you feel you need to - relax, have company, cry, laugh, etc. You’ll get there and will suddenly feel so much more human again. Sending lots of get well wishes.

That is a great help @Sal3023, thank you. Ill start that now. I’ve left a message for the nurse, so hopefully she will put my mind at rest. Hope youre enjoying the sunshine!

Happy to help. Hope the nurse gets back to you soon and eases your mind. :heart:
Loving the sunshine! Currently on Anglesey for the weekend. Picked a good time to come! :blush:

Oh, I’d love to go there! I’ll make do with reading in the garden for now though. :blush:

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The garden in this weather is just as good. Maybe you could plan a trip to Anglesey whilst you’re sitting in the sun… :wink:

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