Radical Hysterectomy Friends

Evening all.

I am 8 weeks post radicals hysterectomy for stage 1b2 cervical cancer found in December last year!
It seems crazy to say that now!
Anyway I need some buddies. I’m finally starting to feel like a human and just want others who went through the radical side to chat to.
I’m struggling with constipation still, back ache and a few other little niggles and need to know I’m not alone…

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Hi @Clokeychips! Although my story is a bit different I had a hybrid radical hysterectomy also about 8 weeks ago!
You are not alone :joy: although like you I’m feeling a lot more normal than I was, there was definitely a point when I was wondering if I ever would start feeling better!
I still have some numbness, tingling bloating etc etc I know everyone is different and no 2 surgeries are the same but happy to chat if you want to PM me xx

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Thanks @Gizzy
How is the Hybrid different? Are you on HRT?

The reason I had a hysterectomy was because I had a tiny amount of residual left after chemo and radiation, so I had a more invasive surgery as my surgeon wanted to be sure we got good margins!
I have got HRT just haven’t started it yet, I know I need to though.
Did you have open or laprascopic surgery? I had both :joy: again not a normal procedure but an agreed one lol xx

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It was open with lymph node removal also.

Like you say no 2 seem to be the same. Finding this forum very comforting though :smiling_face:

@Clokeychips I also had open radical surgery, on the same day as Gizzy. Still having some trouble going to the toilet, on and off bloating, pain etc. Somedays I’ll almost forget I had it done until I move a certain way, some days are not so good. Feel free to DM me if you fancy a chat

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Hey, hello!

Im 5 weeks after radical histerectomy. I had results from lymph nodes and margins. All negative. So no more treatment and moving into checkups. I totally get the feeling of starting to feel more like yourself but at the same time there’s still so much going on inside of you.
Happy to chat if you want to :slight_smile:
All the best with your results!

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Hello, I had open radical hysterectomy 5 weeks ago now. Feeling much more human, like you say but I’m still pretty swollen in my belly- is anyone else experiencing this? Thought it would have gone down by now… maybe I’m just being impatient!

Had my check up yesterday (9weeks)
Was good to speak to the pros and get some answers about the little niggly symptoms - although not sure anyone has the answers for constipation :rofl:
I found a small lump just below my scar but they think its just scar tissue. Im not sure walking into the consultants room and crying convinced them i was fine but i feel so much lighter already today :slight_smile:

@Ren2852 i’m still having days where my belly can get quite swollen and i’m a small person so its noticeable i have not stepped out of stretchy trousers yet lol

Hi,

I had my open radical hysterectomy at the end of January (15 weeks ago) after being diagnosed stage 1b1 in November 2022. Have had all lab results back and am now in remission, thankfully. I had a bit of a set back when my wound became infected and I ended up getting sepsis. I had to spend another week in hospital as a result and required a second surgery (debridement of the infected tissue). To be honest, the cancer has been an awful experience (as we all know!) but for me, that was worse because I was very ill and it was more immediately life threatening than the cancer. However, I finally feel more like myself again (perhaps a slightly different version though) and am back out driving and having a life! The tiredness gets me though. Suspect it’s a mixture of the hysterectomy, sepsis and early menopause coupled with being back to “normal” family life/running round after the kids. But wow! I do get tired and rather enjoy a nap nowadays! Not sure if anyone else is the same…
Also, I get achy. Some days I just get achy everywhere - legs, arms, etc. That’s probably the thing which bothers me the most. Possibly because of the hormonal changes, not sure! I’m on HRT. I have the oestrogen gel continuously and progesterone tablets two weeks on and two weeks off. Helped the hot flushes a bit but not completely

Hope you all continue to heal well!

Morning @Sal3023

This is exactly what ive been saying to people a slightly different version Which can be a good thing.
Sorry to hear about Sepsis! scary stuff. Its good to hear your back driving and back to life. I think that’s going to be the hardest part for any of us that now the scars are healing physically everyone seems to think we are “fine” but there is still the internal healing that needs to happen! I start the McMillan counselling next week and i’m hoping that shakes off even more of the trauma.

I am the same as you, soooo tired i’m sleeping 7-9 hours a night and the aches are there too. I’ve been doing shots of extra virigin olive oil - a tip from a menopausal friends at work.

I think this is all just part of the body healing and i am hoping with the summer round the corner my energy levels might head back up to where they were.

It’s my 42nd Birthday tomorrow and heading out for the day to celebrate life :slight_smile:

It was pretty scary. It took me a couple of weeks to even admit I’d had sepsis, but I’m doing well now and spreading the awareness where ever possible.

You’re right, we have to focus on our mental health too. I’ve had some appointments with the psychologist at the hospital. It’s really helped talking it through and hearing her say that my feelings are both valid and expected. I feel more able to talk about what happened now than I could before. I find if I need to cry, I just do. Those who have been helping me during this time completely understand and aren’t bothered at all and if anyone ever is, I don’t really care! Ha! Some people have even joined in with the crying. It’s really helped. The rest of the time I just laugh and try and have fun. It makes you realise how blessed you really are doesn’t it! I’ve also booked a ton of holidays and trips away in order to have things to focus on and things to get better for! Highly recommend doing that. Even my consultant said it’s a great idea and I deserve it, so if it’s what the doctor orders, who am I to argue?! :woman_shrugging:t2:

I’m glad I’m not alone with the tiredness and aches (though sorry you’re also suffering!) I hadn’t heard about the oil before but will give it a try. I’ve started cod liver oil too. Also, just trying to get into shape a bit more as I piled weight on whilst sitting around doing nothing for so long - can’t be helping the aches!

Oh wow! That’s brilliant. Go and enjoy your birthday. Mine was a couple of weeks ago and I just had fun. I felt so happy to have a birthday after wondering if I’d have another one again, that I just made the most of it. Every birthday is a blessing and you can’t help getting older so make the bloody most of it I say! I hope you have a fabulous day and wish you a very Happy Birthday! :blush::tada::partying_face:

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Hiya i had my open radical on the 13th february so 12 weeks now, im on the hrt and it definitely helping.
Still get a bit of tenderness on my belly like a stitch kind of burning feeling and twinges now and again down there but getting there and feel a lot more like my new self.
Went back to work tuesday and did find it hard as i clean caravans and by the end of the day my back ached and i fell asleep on the sofa that night, i literally couldn’t keep my eyes open, hoping it gets easier as time goes by.
Still suffer with constipation but always have, plus piles dont help lol, the doctor gave me cosmocol sachets to take and they help.
Always been quite big but definitely piled the pounds on during this and got asked the other day when my baby was due as i carry my weight round my belly, i put him straight and he did apologise, it did get to me though as it made me think i wont ever have anymore kids, not that i want more lol, i got 3 and am 45 now.
Also as im single im very nervous about when i have sex again as it will be with a new person and with my changed vagina.
Anyone else in similar situation scared or was sex first time different? Xxx

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I haven’t tried yet lol but the nurse said a glass of wine and some lube should do the trick ha ha

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Hi everyone!
I’m 6 weeks after (hysterectomy on April 28th)
Would love to connect with you all too.
Having trouble explaining how I feel and think having people that get it may help…. Feels absolutely crap that you all understand though…. Wish none of us had to go through this….

Sending HUGS xx x

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Honestly, its worth having a read through some of the topics on here and you start to feel not so alone :smiling_face_with_three_hearts:

Same, wish no one had to go through this! x

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Hi all my MDT is next week to decide what kind of hysterectomy I’m going to have. Would like to know anything about your surgeries. How much pain you were in. What to expect. I’m terrified of the catheter. What do they do with it? Sorry for silly questions but what iread just makes my brain ask more. How long were you in hospital? How was it when you got home? I’ve never had a big operation before. I had my first general anaesthetic two weeks ago for my lletz as they said they needed to take quite a bit out. Can you lift your legs after? My shower is in our bath so it’s a big step to get in. Anything I should take to hospital with me? Constipation seems to be very common. This would definitely be new to me as I have IBS and go toilet too much. Is there anything you did to help relieve pain and discomfort? Sorry for the long message my mind is in over drive

Any of you guys suffering with you back?

At first I thought it was the pain from constipation but I’m not so sure now as it’s getting higher and stronger!

Sometimes I think it’s beta off not knowing. I didn’t research at all and the only advice I would give is to get some cosy loose dungarees for after the op. They are perfect to live in for the weeks after.
You’ll be fine with the cathater. I got lots of pro biotics in for when it was removed to help ensure there are no infections. X