open radical hysterectomy pain help!!

Cervical cancer post treatment and side effects
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Hey everyone.

Firstly I'd just like to start by saying I found myself in CC club just over 4 weeks ago now and without reading these forums I dont think I'd of got through it all how I have done so thankyou.

So heres a quick break down of my journey so far

31st may unable to feel coil strings and notice heavier than normal discharge, call the gp who arranges apt with nurse following day. Nurse can not detect coil strings and notices inflammation and advises referral to colposcopy.

Colposcopy apt made for 5th June, which I attend completely oblivious to what I may be facing. It was here I first heard the word cancer! But still led back allowed them to take some biopsies and kept in my little dream world that its all to find my coil.

Tuesday the 9th june I get a call asking me to return for results the following day ....at that point my world came crashing down, my bubble popped and I knew instantly we were no longer discussing my missing coil.

Wednesday 10th June my results....the words I have to tell you the biopsy shows you have cancer of the cervics...its always something you imagine happening to other people, or watching on TV, but never do you plan to hear it in regards to yourself.  Obviously due to covid all this was being faced on my own, but I have to hand it to the drs and nurses they have all been so supportive and nothing has ever felt to much trouble.

The next week was definitely the worst, I had my MRI a few days later and awaited the MDT to stage and plan my treatment. This page during that week was my saviour knowing I wasn't alone, the anxiety the tears the stress were all normal....it really did help me get through it

Day of the MDT I decided to have a little drive out get a macdonalds sit in the car all with my mum and 15 Yr old daughter trying there best to take my mind off things and pass the time as quick as possible....then it happened the call.....i had been staged at 1b2 with no clear node involvement and clear margins...it was a positive outcome and I finally felt I could beat this

So last Wednesday 15th July I had my radical hysterectomy, including lymph node removal and due to a few complications (endometriosis near the spine) the op overall took 5 hours. I feel like its been the toughest week of my life, I've hd blood pressure amd temp issues which has e my stay in hospital slightly longer but finally got home last night sporting my lovely catheter for a few more days. 

I always knew surgery would be tough, but I dont think I kinda understood how tough....6 days post surgery finally got the strength to have a shower but still really struggling on my feet...is this normal? The pain is totally under control whilst I'm led down....it really is only when I go to move around it litterallytakes my breath away. And wow the exhaustion...thats a whole different level...my pattern is currently eat, tablets, sleep, eat, tablets, sleep.

Guess I'm looking for reassurance that all this is standard and its normal as normal can be haha...

Thanks for reading

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Hi Lisa,

Wow what a journey you've been on, and its no wonder you are feeling exhausted after the whirlwind journey you've been on the last few weeks - let alone recovering from what is a major surgery!

I had the same op as you in May and the first two weeks were tough, and I was also surprised at how difficult simple things like having a shower, or getting in/out of bed, etc could be

And the initial progress comes in such small increments that it can be hard to notice how far you have come but you'll find that suddenly, you'll realise you're able to do things again that you couldn't do yesterday/last week/etc

The recovery really is a matter of patience and  honestly for the first two weeks I was too exhausted to even watch TV. Let yourself rest but keep building up your walking time around the house, little and often. By 6 weeks I was able to enjoy 30min walk outdoors without a rest/any painkillers.

It is tough, but what you describe sounds a lot like I felt as your stage! Once you start to turn the corner towards recovery I am sure you'll find it comes in leaps and bounds! Feel free to message me or ask any questions 

All the best with your recovery xXx

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I had a radical hysterectomy the same week as FeelingtheFear for stage 1B1, and YES your pain is normal.  I am a healthy, fit person who went into surgery in the best shape of my life and those first two weeks were brutal. Just getting up out of bed or a chair was like a military tactical operation.  If I laughed or coughed or god forbid sneezed...agony.  And I was completely exhausted all the time.  And that catheter is from hell and makes everything so much worse. I remember crying to a friend who also had a RH that I felt like I had actually been hit by a bus. And she said it will feel that way,  

To repeat what feelingthefear said, this will take more patience than anything.  It is a major, major surgery and you do not just spring back immediately.  The first two to three weeks are really hard.  I suggest you just rest and listen to you body.  Getting up and taking short walks a couple times a day hurts and wears you out, but it will speed up the healing over time. But mostly, just rest.  Your energy will come back and in a week or so your pain will start to decrease pretty dramatically.  The overall healing happens pretty slowly--when I reached week six I still had some way to go, but I was leaps and bounds from where I was in week one.  Now at week 10, I am probably at 85 percent.

 

I am so sorry for everything you have gone through, but I promise you, each day now is going to get just a little better and soon you will go long stretches of time without thinking of your abdomen.  If you have any specific questions, feel free to PM me or post them here to help others.  I know this forum was a life saver for me. 

 

Best wishes for good days and for all the patience you need.

1 Like
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Hey

Thank you so much ladies. Its so reassuring to just hear that its all just part of the process amd I'm not just being a wimp! Haha. Tomorrow I have to return to the hospital to have my catheter removed, im dreading the journey so much as still feel so weak amd the journey home made me so sick, I just keep telling myself it won't be as bad my body is 2 days stronger than it was before and I can definitely get back to my own bed and relax for the foreseeable once its all done.

Again thank you for your responses, I have been keeping up with both your journeys and you wouldn't believe how much you have all kept me sane. 

Xxx

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Hi Lisa

I also had a radical hysterectomy for a 1B1 diagnosis and I am 5 weeks into recovery.

The surgery is really tough, I didn't understand how tough it was going to be either, but I promise the recovery does get easier.

I was told that you notice some improvement every 24h and this was true with me. Set yourself some goals for walking, mine was laps of the flat in the first week, building a few more on every day, I can now walk for over an hour without resting and even though they were very difficult at the time, I can do my week 3 walks with ease.

If you haven't got one, I'd highly recommend you buy an abdominal binder, I felt a lot 'safer' walking around with this on, as it kept everything in place. Mine was about £15 on amazon.

I hope your trip to get your catheter taken out went OK, mine was a 3h round trip as my hospital was so far away and I felt every bump on the road, its not something I want to do again even after 5 weeks, I dread that journey.

Good luck with your recovery. You've done the hardest part Xxx

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Getting that catheter out will make you a new woman. I had to take mine out myself...long story but COVID is to blame. It was actually super easy-a nurse friend told me to deflate the balloon and then just walk around and shake my hips and it would basically fall out. Yep. Worked. The only bad part was that I felt and looked so ridiculous I kept laughing and  laughing hurt like hell. But being free of rhe awful catheter made moving easier, and it gave me such a feeling of freedom.

Like Betsy, I added on to my walks each week and it gave me goals to accomplish and I think really helped my healing and soreness. I woukd say to wak as much as you can!

Hope you are feeling better each day!

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Hi ladies

Well i can honestly say if there's something to go wrong it's gonna happen to me haha!!

I went to have my catheter removed last Thursday and ended up in there for a full 12 hours, my bowels hadn't moved ao they decided to do an enema whilst I was there (wow that was traumatic but definitely went home lighter) and then although my bladder seemed to be working OK they picked up signs of an infection so sent home with antibiotics.

Fast forward to Saturday, the district nurse arrives to which I was totally unaware was happening tht day to remove my staples. She removed 26 of the 30 of them and left 4 due to the bottom of the incision needing a little more time...yeah great i was starting to look and feel human again....until I wake up the following morning with wet patches all over my nighty to realise my wound had actually come apart again in places.....que my dramatic side and sheer fear my intestines were gonna come out? anyhow they came and steri stripped me up for the day and today sent me to spend yet another day getting everything checked out at the hospital and a few more days worth of antibiotics

All in all there happy how my wound looks just seems the staples needed a little longer but I'm strapped up with tape no guts falling out etc ? and gonna carry on focusing taking each day at a time.

I'm pretty sure nothing else can really go wrong now so onwards and upwards.

Xxx

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Aww Lisa im so sorry to hear about the ordeal you've had over the last few days! That is such unfortunate bad luck! As you say, onwards and upwards, sounds like they have now covered all the bases so your recovery can only improve from here on! 

All the best xXx

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Your fear of your intestines falling out made me giggle.  Eleven weeks post surgery, I still freak out if I lift anything mildly heavy because I am so sure my intestines will fall out of my vagina (completely unlikely, but a horrifying enough image to keep me out of the weight room forever).

I am so sorry for all those setbacks.  I am amazed that you had 30 staples! I had thirteen and it seemed like so much metal in my belly.  But, I am glad you seem to be back on the road to recovery and am impressed by your humor and attitutde.  Attitutde is everything in this process for sure.

I started back to work last week-week 11 for me, and I will say that although I thought my energy was back and that I was at 85 percent, wow.  This weekend I have just been on the sofa, totally and completely worn out.  Pain was not an issue for me--I am a teacher so my job is not really phyiscal.  But, the demands of going back to school with the pandemic raging in the US and the deamnds of being up and going all day long....I cannot believe how tired I am physically and mentally. I cancelled all weekend plans and have opted to stay on the sofa with Netflix to be ready to go back again tomorrow.

One day at a time!