Post-radical hysterectomy

Hi CS3 

welcome to the group

Im so sorry to hear what you are going through, its a really tough time im sure and im sending my love to you for a speedy recovery.

I too had an open abdominal hysterectomy with vertical scar. If you read my bio you will understand more about my post op issues. 
I had a catheter in for a few days post op, left hospital after a week or so catheter free, but very quickly i noticed i was leaking urine, I was told it was normal to leak a little as its the post op “gunk” and fluid coming out. After a couple more days it was getting worse and worse to the point everytime i moved position it gushed out.  I got to point of wearing huge incontinence pads to try to keep from wetting my clothes.  Horrendous time, but it turns iut they had damaged my Ureter tubes during the surgery and so the urine was leaking straight from my vagina rather than from my urethra.  Has this possiblility been discussed/ruled out with you at all? 
I had to have an op to have stents put into my Ureter tubes until they healed and had a catheter in for 10/12 wks at home

I hope you get sorted soon

Kath xxx

Hi, thank you so much for your reply. It is such a hard time and I’m sorry to hear the troubles you have had throughout your journey too ️.  I’ve just read your bio and sounds very similar, I’m 34 and straight into menopause with it as well, so far not been too bad. I feel up until my op I was staying in auto pilot and just got through the appointments probably not really believing it , until after op it’s really hit me physically and mentally. I think because of these set backs with toileting, fluid and hospital stay it’s making recovering from op so much harder. 

so when I was admitted for second time they said they tested the fluid and I also had a ct scan which to them confirmed it was lymphatic fluid and no hole on bladder. The urethra was never spoken about I don’t think. When sent home they suggested the fluid should stop once I heal as lymph nodes odes find a new path due to lots being removed. But like you I am having to wear large incontinence pads as it’s a lot of fluid. I’m not sure myself if it’s urine as when I self-catheter I am emptying 250+mls. I’m exhausted with it all as having to wake up during the night to catheterise myself to stop my bladder from over-stretching as they have suggested nerve damage and if it overfills can only make it harder to repair. I have a feeling of fullness when my bladder needs emptied slightly but also timing it too, but feel I’ve not got the sensation or connection to release when I pee if that makes sense. Sorry for to much info , I just don’t want to be left using intermittent catheters although I know it’s a sacrifice to make to get rid of the cancer. 

im also awaiting breast appointment on Monday as my PET scan lit up on my breast and was an incidental find so on morning of my op I was told I couldn’t start HRT until this is investigated xx

Hi CS3 

Sorry to hear you’re having these issues too.

I also had my diagnosis in Sept (1B1). I had my radical hysterectomy in October (6 weeks ago). Node negative too. In surgjcal menopause now (aged 39) and using estrogen HRT patches. 

Overall my recovery was good. My issues have been around the bladder. I had my trial without catheter a week after the op but failed. Had no feeling of needing a wee. Unfortunately I did not have a great experience that day as I feel the nurse who seemed inexperienced let me go into really bad retention before a different nurse rerecatheterised me. I do wonder if this caused further problems but I’ll never know! I went home with another catheter- lots of blood in it during that week and told I had a urine infection- given antibiotics. At second TWOC I could push out a little wee but still retained too much. Catheter back in for another week. Blood again one day and thrush/infection. Third TWOC a week later I had a good nurse and did much better plus felt more recovered. Bladder scan machines were playing up and not consistent! Still retained too much but sent home then without catheter. Called back in a day later for bladder scans and was doing much better but still not emptying my bladder. 
So I had no idea when to go to the toilet. I had to push wee out and had no idea when I was empty. I was taught to self catheterise morning and night to ensure I was empty. This inproved for me over that week. At first I was draining 80ml, eventually 10mls. 
Now 6 weeks later I have been able to stop the self catheterising. I still have no sensation of needing a wee so just go every 3 hours. Wee won’t come out naturally. I have to push, stop, push…! I was quite upset initially and couldn’t sleep worrying I would overstretch my bladder at night. I also kept thinking about how stretched my bladder was during my first TWOC and whether that caused permanent damage. It really affected my recovery- particularly mentally.

The catheter nurse is positive and says my bladder could return to normal but my body has been through lots and needs time. My surgeon and urologist have said it could return to normal or may not. 

I did have some leaking around week 2 and 3 post op. I could never work out if it was coming from my urethra or vagina but mine stopped.

I have heard of others who have been through similar with their bladder but have improved over a few months. 

Hopefully like me you will not need the intermittent self catheters for long. Are you able to get any wee out without? I find leaning forward and holding my tummy in helps a bit and wee is coming out faster now. It took half an hour a few weeks ago!!

Good luck. If you find out any tips for getting the bladder going please let me know!xxx

Hi CS3 and welcome to our group.

I had different surgery, so didn’t have quite the same issues you’ve experienced, but good to see you’ve had replies from other ladies who have gone through this.

I did have open abdominal surgery twice however, and I have experienced the leakage-at first it literally poured out while I was recovering in hospital and was very unpleasant, but this did taper off in time. I was advised after I had a ct scan in hospital that I had a pelvic abscess and “pelvic collection” where the fluid pools in the pelvis, due to the nature of my surgery but this would heal in time. I never actually asked how many lymphnodes I’d had removed because it didn’t cross my mind that this could be an issue. I know it’s not urine as I’ve had my bladder removed.

I do still have the tiniest amount of fluid leakage, so I do need to wear a liner every day, but nothing like it was and it doesn’t cause me any issues.

I’m sorry to see you’re having further investigations on your breast and hope it’s nothing of concern. I’ve had incidental findings on scans too at my first diagnosis, although not on my breast. Things can get picked up we had no idea about before! I do hope your bladder issues resolve in time and that you  move away from self catheterising-hopefully it will just be temporary until your body recovers.

Sarah xx

Hi CS3

I had a robot assisted laparasocpic radical hysterectomy in 2017 for cc.  Despite a course of Bethanechol, to try and kickstart my bladder back into action, I couldn't pee a single drop even 4 weeks post op and was taught to self cath.  Shortly after that I was able to pee very small amounts but had to cath 5-6 times a day (including during the night) to prevent my bladder overfilling.  About 7 weeks post op I started chemo-radiotherapy and went back into total retention - the whole experience felt overwhelmingly horrendous at the time and I was referred for counselling.

When all my treatment was complete my bladder function gradually, and very slowly, improved over the course of a year to the point that my residuals were generally 100-200ml.  I carried on self cathing daily until last year when I was referred to another urologist who advised me to try not self cathing - he said at my age (60s) it wasn't unusual to a have a degree of urinary retention.  I've self cathed just occasionally this year to check my residuals which have remained fairly stable plus  I haven't had any UTIs; so far so good. 

It seems I'm at the extreme end of having a tough time with urinary retention, as a result of cc treatment, so hopefully in time you'll be OK.

Hi Beth2 

Thanks for sharing your story. It is great that you were able to stop the self cathing in time. I have been able to too. I hope you don’t mind me asking- did your sensation/urge to need a wee ever come back? Do you have to push to wee? 

I still have to do timed voids and push the wee out! A couple of times when my bladder has probably been quite full I have managed to release a trickle of wee without pushing and I have had a slight sensation of needing to go only once! I’m hoping this could all increase!

Hi May2

It's fine to ask, happy to help if I can. 

Yes, my sensation/urge to wee came back; not quite what it used to be but good enough. 

I was advised not to strain to wee; not sure why - I think it can lead to a prolapse.  Sometimes I gently contract/pull in my lower abdominal muscles which seems to help push out some wee. I haven't discussed the latter technique with a health professional but it doesn't seem to have caused any harm so far

Hi CS3,

I'd like to know how your lymphatic fluid is doing. 

I'm 4wpo radical H for 1b2 adenocarcinoma. 

I'm leaking nonodourous yellow watery liquid from vagina and my belly is so tight and bloated with fluid.

Hope yours resolved.

Thanks

Sojo

Hi

Sorry to hear your having to go through it too

s️orry I’ve not been on this forum much as I’ve had a time of it after my op with different complications. 

The fluid did last a few weeks until it gradually got less and less then stopped. I did have mine tested when re-admitted to hospital and this confirmed it was lymph fluid. I also had a ct scan to rule out any holes in the bladder as this can sometimes happen which can make urine leak through the vagina. The consultants explain that once the top of the vagina healed fully the lymph fluid wouldn’t be able to leak through the vagina anymore and would essentially try and find a new path. 

I hope your able to seek some help from your nurse / surgeon. Hopefully like me it will stop ️

I'm sorry that some of us have a time of it. My 1st suspected complication was a rectal perforation but with fingerscrossed it healed without further surgery and iv antibiotics. 

Tell me, how many weeks postop were you when your leak began? Was your abdomen really bloated at the time? My ultrasound shows excess fluid in the abdo so suspect this is what leaks out from vagina.

So are we saying the vaginal cuff isn't.fulky healed and so allows the excess fluid to leak.out? Gosh so when it heals, I might pop!

Thanks