Hi everyone
This is my first post on here but I have found the site helpful. I think most of the time I have been avoiding the cancer issue by staying over on the hystersisters site. The ladies on there have been fab. However, no one seems to be in my situation!
I had a radical hysterectomy on 28 October so I am now 7 weeks post op. I came home with an Indwelling catheter for a week, went back for a TWOC (trial without catheter), could only wee 100 mls and had 800mls in me by the time they recatheterised me. Catheterised for another week… Same again. This time they gave me an Indwelling but without the leg/night bags - I had a flip flow instead which I opened every 4 hours, even through the night. TWOC… Same again! This time another flip flow valve but with night bags so that I could sleep through. At my fourth TWOC at 6 weeks, they showed me how to self catheterise. I had a complete melt down the next day, it was a nightmare. I was flooding the bathroom floor, putting it in the wrong hole… Awful. I’ve got the hang of it physically now and can almost imagine having to do it away from home - but with a mirror and light and (hopefully) very clean, spacious toilet cubicle… Until I have to I am just timing it to be at home. I have to empty at 4 hours, and at midnight and 8am. I’ve been struggling with anxiety this week as I just don’t know how long this will go on for. I’m obsessing about my fluid intake and output and just getting so panicky. I am allowed to drive now so I have been making sure to get out and about a little as I’m sure that 7 weeks at home mostly on my own isn’t helping my mindset!
I know it’s only wee and people are going through so much worse but it’s really scaring me. I think I would feel so good and almost back to normal if it wasn’t for this. I am still being supported by the gynae nurses, one of whom specialises in urology, but I’m not actually being seen by anyone in the urology department. Surely they could help? My Drs and nurses just keep saying that it will take time but if I want to be referred to urology I can be, “because I’m worried”. I guess that means they’re not worried?!
Does anyone else have any experience of this? I have found posts on here but they are pretty old I think. Thanks for reading.
So sorry to read this. I'm afraid I cannot help but didn't want to read and run so just sending you great big hugs and hoping it all sorts itself out for you very soon.
Big big hugs! I can totally understand the anxiety. And it's not just WEEEE! After the RH, I was on the urine catheter and I remembered myself recording the fluid intake and checking the urine output in the wee bag. I was so depressed when my oncologist removed the catheter to let me wee on my own but only tiny droplets trickled down thus I was put back on again. I felt like a total failure and was sobbing miserably outside her clinic holding onto the new catheter (aka 'shopping bag'). But I guess time is what we all need. My oncologist said some patients can take 2 weeks while some can take 3 to 6 months for the bladder function to restore. I know it feel really sucky but you will heal in time. Big hugs!
Sorry for late reply. I just wanted to post to let you know I totally understand what you are going through. I had a rad hyst for 1b1 in Sept and after having catheter for a few days had to self catheterise. It was one of the hardest thing i've had to do both physically and emotionally. I cried constantly and just wanted to be 'normal' again - I dreaded doing it, it hurt and each time I was disapointed by how much I drained when I thought I was empty. I felt like such a failure I couldn't even wee properly, I scrutinised how much I drank v's how much I wee'd and after a few days was so fed up I drank as little as possible so I didn't have to do it (piddling on my hand, balancing on one leg with a mirror) I kid you not I was to cart away... I was in a bad place and overwhelmed with anger as I think everyone on this site had been through enough with diagnosis and treatment ... the side effects are cruel. For me, it settled down after about three weeks. You say in your post 'they don't seem worried' - if you are, as it's you living with this daily anxiety then there's no harm getting it checked out.
I really hope it doesn't last much longer for you and doubt I've helped much but just wanted you to know you are not alone i this - it's not just wee - it's everything. Take care, Mel x
I'm sorry Mel I've only just seen your post, thank you! Well since 28 December I have stopped the ISC as I am now able to wee on my own. I still can't really tell when I need to go but I am just going every 2-3 hours or so. At least now I feel less trapped and scared of having to use public toilets! I saw my consultant for my second post-op check up this week and he said he would talk to the urology department to see if there is anything that can be done to recover my bladder sensation, otherwise I think it is just a case of waiting to see if the nerves eventually fix themselves. I feel much better emotionally now, since this all kicked off since my smear test in August, back when I thought I was healthy, there has been something new to cope with pretty much every week and this was just another thing making me feel broken and far from 'normal'.
