Excessive bleeding

Hi SarahH1

My urinary retention was caused by nerve damage to my bladder during my radical hysterectomy (Da Vinci robot assisted laparoscopic) in 2017. And according to one of my oncologists, my retention may have been made worse by my subsequent radiotherapy treatment.

Initially I had no bladder sensation and was in total retention, unable to wee a drop, so I was taught a technique called intermittent self catheterisation (ISC) to enable me to empty my bladder. Although I was able to use catheters successfully I found that unless I used a particular type of catheter, and a mirror to see what I was doing, I inevitably ended up with a urinary tract infection (UTI). For me, ISC involved sitting on the floor, or a low stool, which wasn't really feasible outside the home (I managed in a hospital by asking for a private space) so I was restricted in where I could go as I needed to self cath about every 4 hours.

I started to be able to pass very small amounts of urine about 6 weeks after my RH. About 2 months after my RH I saw a urologist who said I might not regain full bladder function and my initial understanding was that I could only expect improvements within 3 and maybe up to 6 months.  My bladder function was still very poor at the 3 month mark and I thought that might be as good as it got. It lead to my mental health deteriorating to the point where I was referred for counselling.

I was then referred to another urologist (in the same team) who just told me to carry on with ISC in the same way and discharged me!

In fact my bladder function kept improving for about a year, by which time I had reasonable bladder sensation and was self cathing less often - every 6 hours. It was at this point that I had to take a decision about my job which was fast paced, very demanding and didn't lend itself to being a part-time post; my bladder issue was a major contributor to me retiring earlier than planned.

After 2 years I became more confident and was self cathing just every 8 hours and, although I still wasn't confident to do it outside the home, it meant my life was easier. However, by then I'd had several catheter related urinary tract infections and I became hypervigilant, always fearing that every niggle might indicate a UTI. I was also afraid that I would have a relapse and develop total urinary retention again. It all had an ongoing effect on my mental health and I worried more about my bladder than a recurrence of my cancer.

My bladder still isn't normal regarding sensation plus I still have a degree of urinary retention albeit I've recently been advised that the volumes I retain are normal-ish for my age (60s); I also have urinary frequency and stress incontinence. On the whole my bladder isn't too troublesome but I tend to avoid events like going to the theatre because of my frequency. I've been offered medication to help with the frequency but I've refused because, in my mind, it might cause a relapse - I prefer frequency to retention. I also still worry about UTIs and anything out of the norm is triggering for me. I sometimes take D-mannose to guard against UTIs plus I use topical oestrogen cream which I've been advised can help reduce the risk of UTIs. I haven't had a UTI for nearly 2 years which feels like a major achievement.

With hindsight I think I've experienced more angst about my bladder than I should have done. Last year I had some bladder pain and I was referred to another Urology team in a different hospital and they have been much more caring and supportive than the first team who, it seems, may have 'set the bar too high' in terms of how often I should be self cathing. Over the past 12 months I've gradually reduced how often I self cath to just once a week, to check I'm not retaining too much, and so far so good.

It seems I was fairly unlucky regarding my post cc treatment urinary retention.  As far as I'm aware it's not unusual to have some urinary retention after a RH but it usually resolves within days.

Happy to answer questions.

Gosh Beth2, what a lot you’ve been through. I can only imagine how this must have literally taken over your life and absolutely had a huge effect on what you could do, and on your mental health. From my point of view it’s been very interesting to read, as in all my years of dealing with this cancer I haven’t known anyone else suffer from this long term. I have however seen other issues for ladies who had the Da Vinci method of radical hysterectomy. 

I’m glad things have improved for you so you don’t have to do it so regularly now. But it makes my life without a bladder seem so much easier! Thank you for sharing your story.

Sarah xx

Beth2 

hi I had a radical hysterectomy with lymph nodes removed and now my lags/foot is swollen. I was told about lymphedema and contacted GP and they are taking blood rests and putting me in water tablets.
I know this isn’t the treatment and have asked for a referral but they are like wait until we have bloods back.
my left leg has hurt from day one and I’m so worried that if I don’t get correct treatment I’ll never get on top of this.
im going to read above but would like advice from you if ok?  

Hi Peace73

I see you've created a new discussion 'lymphedema'.  I'll post my reply there.