Newly diagnosed and terrified

Hello I’m new to this group, just reading all messages. I’m going in for a radical hysterectomy next Wednesday, I’m coping ok but so scared about it all. How you doing after your surgery? Em

Hi Em41 and welcome to our group.

You may want to start a new thread so that it’s more easily spotted by others. Meanwhile, I’ll tag May2 in case she hasn’t spotted your post in this thread.

All the best with your surgery next week, and I hope you’ll let us know how you get on. Several ladies in the group have had this surgery so I’m sure there will be support for you here.

Sarah xx

Hello, ok fab I’ll do that tomorrow as working late today. Thank you for replying x

Hi Em41 

I hope you’re doing ok. I had my radical hysterectomy 3 weeks ago. I’m doing ok now. My surgeon said the op went very well- no issues. My cut healed really quickly.

I did experience pain in ths first week but was up walking around by day 2. I had to hold a rolled up towel on my tummy to feel better when walkng. I did not feel ready to go home by day 3 but they said I’d feel better at home and I did. By the second week I felt better and now I only need the occasional painkiller for twinges! 

I’d recommend being prepared with something like Movicol/laxido to avoid constipation afterwards. By the time I took it it was too late and I needed a microlax enema to help me out which took all day to work!! I tried other things first and they were too harsh for me so it’s worth seeing what your team recommend. Also get lots of painkillers in so you don’t have to keep getting people to pick up more for you! I realised when I got home that lots of my things were awkward to get to so it’s worth putting your essentials somewhere easy to reach!

I have had my histology results and nothing else was found under the microscope and cancer was removed with clear margins so I am relieved about that.

My only issue is my bladder but it is getting better all the time. I had my catheter in for 3 weeks altogether. I have to push to get urine out but it has improved from the initial trickle! I’ve been shown how to self catheterise to ensure I’m emptying my bladder afterwards but I hope this is short term until my body heals. Some parts of me are still numb but steadily returning to normal. 

I hope you get on well next week. You get monitored very closely after the op which is good. Sending my best wishesxxx

My goodness you were up and moving quickly that’s amazing well done you! I’ve heard that going to the toilet can be hard so I’ll get some movicol and hopefully I’ll be able to pass urine. Does it hurt having to help you go to the toilet (wee). Can I ask how your legs are? Few people have said that because the lymph nodes come out your legs swell? That’s amazing about your results! So pleased for you, how long are you taking off work? And are you able to walk abit better now? 

sorry for all the questions just seeing what people are going through I know everyone is different. 

much love xx 

Hi Em41 

I’ve had no pain passing urine. I do have to push a bit to get wee out though. Every week after the op I had the catheter removed and trialed whether I could pass enough urine/empty bladder. It had to go back in twice. My sensation for needing a wee has not returned so I just try and go regularly! My nurse says it’s still really early days and should improve. I was so scared of having catheters inserted but it does not hurt. Hopefully you won’t have an issue with this though. I think I was just unlucky with that aspect. I was fine with everything else though. 

My legs have been fine. The night of the op I found uncomfortable as I had to stay in bed and being still was more painful for me than the pain of the op! So I did get tingly legs. The nurses gave me some pressure things that kind of massaged my legs and felt good. They kept me awake though until I put earplugs in as they were noisy! The next day I could walk around so my legs felt fine. They felt weird and tingly at the top for a few weeks but that’s gone now. No swelling for me.

My whole tummy was swollen for the first week and my bra would not fit! I got extenders from Amazon but after another week my tummy went back down. 

Another tip- you can get a dry mouth after the op. Sweets help. It’s worth having a bottle of water with you too as I could not sit up enough at first to drink from the glass they gave me! 

I can walk fine now. I potter around but haven’t walked far. I need to start building it up reallly.  My work have covered me until Jan so I don’t have to think about it but I can take longer if needed. I’m going to make sure I’m quite strong before going back.

I’m happy to answer any questions so just get in touch any timex

Hi SallyD 

I hope all is going well with your treatment so farx

It seems very common that a lot of people struggle with going to the toilet (wee) I suppose it’s all being moved around and the body doesn’t like it! They said I would probably be in for 5-7 days and will put a catheter in too so the body isn’t working too much, said once I’m self caring they will send me home.

sounds like you are healing really well that’s amazing!

Ill make sure I get some sweets and small bottles of water, we’re you allowed visitors after the op? And how long was the op?

Have they started you on HRT? My surgeon said I would be put on it straight away to help with the menopause. And are you having blood thinning injections too? 

More questions! Thank you for replying to me I know everyone’s journey is different but it’s good to see what other people went though and any advice is very much appreciated.  Thank you again.

xx

Hi Em41 

It sounds like they have a good plan for you being in 5-7 days and checking you can self care before going home. 

My surgeon took my husband’s phone number and called him straight after my op. He was able to visit me straight away. I was pretty sleepy and could not make much conversation so I just asked him to chat to me and I listened! My op took about 4 hours. 

I have started HRT patches. They gave me 1 in hospital a day or 2 after the op. I now just change patches twice a week. I haven’t experienced any symptoms of menopause. I’m not really sure how it all works but I don’t feel different yet! Yes, I’ve had blood thinning injections for a month! Last one tonight! I’ve managed to find an area of my tummy that is still numb so I don’t feel them anymore!!Xxx

Hi May2,

My surgeon was really good said they have a plan all sorted so hopefully that goes to plan!

Oh ok my mum is coming in with me and will wait at the hospital and my husband will go home and wait till he gets a call I think. Wow 4hrs I got told 2-3hrs it’s such a long time isn’t it.

You have the patches, I’ve been told they are really good and Aldo that the gel is good too. I’ve been told to use an ice pack before giving myself the injections so you can’t feel it so much. Did you do them yourself? 

Are you numb everywhere or just on your stomach area?