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.