Update

I have had the same diagnosis and feel the same as you.   Currently waiting for timetable re scans and hysterectomy.

Hello ... firstly I am really sorry to hear what you are going through. I am here if you have any questions or just need to rant. I was diagnosed with womb cancer in May this year and in July I had a hysterectomy (I’m 43 married but no kids). I remember feeling numb, scared, foggy, tearful and anxious. Are you having a laparoscopic (keyhole) hysterectomy? From my experience the operation itself wasn’t half as bad as I expected. A little discomfort from the catheter upon coming round but in my case I went to theatre at 930am and by 12 I was sitting up in bed eating lunch and smiling. I  felt relief that the nasty cells had gone. The next day I was allowed home. I didn’t have much pain but a bit of a heads up....the car journey home as a passenger might make your tummy feel a bit funny...take a pillow or big cushion to wrap around your stomach and ask whoever’s driving to avoid speed bumps!

In the days after my op I followed advice and did gentle walking etc. But no lifting or heavy exercise...tiredness kicked in for me a couple of months later but I would say I am almost back to normal. I was back at work in September and have only had a few days off with fatigue. Your op has come really quickly after diagnosis so that’s good as it reduces worry time. This is the worst bit...right now when your mind is racing. The reality is actually ok and you will get through this. My cancer was early 1A and I needed no other treatment. 

Thinking of you  

I had a total hysterectomy (with all bells and whistles in mid November 2019 (just under 3 weeks ago.). I had keyhole surgery like you but I think maybe a longer operation - they told me it took over 3 hours and then I was in recovery ward for quite a long time afterwards, waiting for my blood pressure to return to normal. 

I did not have much pain immediately after the operation and went home in 48 hours. The pain is worse this week, 3rd week and seems to be at the site of where I had lower pelvic lymph nodes removed on the right. And across right front thigh. The doctor said at follow up this was quite common, so did the CNS, and was due to damaged nerves starting to wake up and just to keep taking the painkillers and it would get better. My cancer was staged as 1a grade 3 so surgery may have been a bit more radical than if it had been grade 1.

I have also been recommended to have vaginal vault brachytherapy because grade 3 cancer has a higher rate of recurrence. Scheduled for early January, assuming I am fully healed up by then. 

Wow - you’ve been through the mill!  I have scans booked in for tomorrow and Wednesday and waiting on a date for the op.  Very nervous and terrified. 

have lost my appetite completely and finding it difficult to concentrate as I am so anxious. X

I believe it’s a laparoscopy by robot xx

Your anxiety is completely understandable... it’s awful being in limbo. Take each appointment as it comes and as hard as it is try to distract yourself. Easier said than done. I found the days between diagnosis and surgery by far the most difficult to cope with. I know everyone has different experience but if you can, take some heart that not long ago I was in your kind of position and it does pass. You will get there. I now look back and think I can’t believe I went through it all. You’re doing amazing just by sharing your feelings and acknowledging your emotions. You’ve got this. 

Thank you Stephy1

Yes ive opted for keyhole but my consultant keeps saying if they can because of my caesarean in 97 might need open surgery hes freaking me out with that xxxx

Hi Kazzie,

Dont worry about the possibility of open surgery. I had that and from what I hear from the keyhole surgery people, I dont think there's much difference in terms of discomfort and recovery time.

If you've had a cesarean, I think you've coped with something more difficult.

One surgeon I saw said the same to me, he'd try keyhole, but there was a possibility of switching to open surgery,  cos of my previous fibroid removal  op. The surgeon I ended up having, said from the start she was doing open surgery,  which was fine by me, as I'd done it before with the fibroid op, so I knew what to expect.

In the event, it was easier than the fibroid op. Turned out open surgery would have been needed anyway. The previous fibroid removal ( plus a subsequent laparascopic draining of an ovarian cyst, plus I had successful IVF), meant that I had lots of scar tissue and lots of adhesions, so the surgeon needed better access and visibility I guess.

I had my op late afternoon,  was up and walking round the ward the next day, had one more night in hospital to be on the safe side, and went home the next day. I had a strong painkiller ( oromorph I think), the first night,( so was not in pain)  then onto co-codamol for a few days, then paracetamol. This was to deal with discomfort more than pain really. I had 28 days of the clot prevention jabs to take home ( I found these easy to do, you have a pre filled  spring loaded little jab kit for each one, and again not painful). 

You have to take it really easy for a few weeks after either type of op, but an excuse to rest up and leave things to other people has its benefits. 

Hope you have as easy a time with your op as I did, whichever kind you have. X

Hi Kazzie,

I agree with Mrs Woodentop. A caesarean would be far worse. I had to have my first daughter induced, and after a long labour had 100 stitches afterwards! I felt far, far better after my keyhole hysterectomy. I think they warn you they may have to revert to a cut, they did with me. As long as they got rid of it I didn't care what they did!!

I was 72 at the time, so no spring chicken, but recovered very well. Just go easy and take care of yourself, and you will be fine. xxxxx