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Suprapubic catheter

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Fluff46
Suprapubic catheter

Hello everyone. Has anyone else been left with a permanent suprapubic catheter and zero bowel motility since their radical hysterectomy? I’m 10 months post op and am desperate to get my life back. It would be really helpful to know if anyone else has experienced the same as me and whether their damaged nerves have recovered? 

 

With love xxx

Jazza
Jazza's picture

Hi

 

I'm assuming that you have a suprapubic catheter because you have urinary retention and can't empty your bladder naturally?  I have had urinary retention ever since my radical hysterectomy, over 2.5 years ago, February 2017.

Initially I couldn't pass any urine at all and had a urethral catheter plus leg bag, then flip flow,  for a month.  After that I was taught intermittent self catheterisation (ISC).  Over of the course of several months I regained the ability to pass some urine naturally, but was unable to empty my bladder.

I am still not able to totally empty my bladder and my urinary residual volumes are generally in the 100-200ml range; I am self catheterising about 3 times a day.

I've seen 4 Urologists about the problem and the consensus of opinion seems to be that  my urinary retention is unlikely to improve now.  I had a video urodynamic investigation, a few months ago, which showed there was no blockage.  So it seems pretty sure that the problem is due to nerve damage to my bladder which occurred during the surgery.  I also had chemo-radiotherapy, a few weeks after the hysterectomy and the surgeon suggested that the radiotherapy may have had a detrimental effect on the recovery of my nerves.

Have you tried intermittent self catheterisation?

My urinary retention is one of two main bugbears (the other being lymphoedema), following my cc treatment. 

I'm happy to discuss further here or feel free to PM me if you wish.

J xx

 

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  squamous  cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Fluff46

Hi

I've just seen your reply. Sadly intermittent self catheterisation causes extreme pain. I've just completed a trial of sacral nerve stimulaton which made everything worse. I have severe urinary and bowel retention. Nerves were cut and removed during surgery.  Next step is the Mitrofanoff procedure in Bristol, although I'd prefer to be able to self catheterise. 

have you experienced yellow/orange discharge and pink spotting about 15 months after the hysterectomy? I'm experiencing this plus pelvic pain, left scapula pain and pain under my right ribcage for the past 3/4 months and wondering if it's normal, or common?

 

sending love, 

 

fiona xx

Harvitt

Are you both in the UK? 

Dr Baranoski at University college London or Miss Elneil may be able to help and are the veery best int their field. 

06 Jan 20 massive bleed. 7 feb 20 smear came back highly differentiated severe dyskolious. 14 Feb biopsies taken. 21st Feb cc cells found. 22 Feb 20 told poorly differentiated squamous cell. 28 Feb staged at 2a. Tumour is 2.4mm/9mm 6 March restaged at 3c due to 3 lymph node involvement - x1 2cm. 12 Mar 20 met oncologist - told me coronavirus will probably kill me before cc does. 18 March 20 pre scan booked.
Jazza
Jazza's picture

 Hi Fiona

 

I'm still self catheterising about 3 times a day. Getting through 2019 without a bladder infection was a major achievement for me. However, I've just finished a 7 day course of antibiotics for my 10th bladder infection since surgery wrecked my bladder nerves. I had Da Vinci robot assisted surgery for my hysterectomy - how was your surgery done?

 

Obviously with the caveat of the current C-19 crisis, I was wondering if you feel you've had enough support for intermittent self catheterisation? I had to be VERY pro-active to get the help I needed. I'd knocked on a lot of doors before my local NHS continence clinic agreed to refer me to a specialist catheter nurse who, it turned out, was employed by a catheter supply company. The specialist nurse was very supportive and introduced me to various different catheters during several home visits. There are some catheters I absolutely can't get on with - they hurt and I end up with infections and in my case there is only one catheter, I've found so far, that works well for me. A nurse told me that catheters are a bit like shoes - what suits one won't suit another - ?stilettos ?crocs etc. I won't pretend I find it easy e.g. I have to use a mirror and light to see what I'm doing etc etc; it's a bind, it's not fun but I've had to learn to live with it.

 

With the above said, everyone's different and I can totally empathise that urethral self cath is not for everyone.  I know very little about the Mitrofanoff procedure although I've previously come across it through on-line searching. I do wonder/worry what would happen if I couldn't perform urethral self catheterisation.

 

 

 You might be interested to look at the blog section of 'Hunter Urology'; there is a series of blogs by a lady called Dorte who suffered a similar fate with nerve damage to the bladder during a hysterectomy for cervical cancer. See the following link:

 

https://hunterurology.com

 

I'm happy to chat further, either here or PM me if you wish.

 

All the best Jx

 

P.S. I haven't experienced the discharge or type of pain you describe in your second paragraph, but I see you have posted separately about that 31/03/2020

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  squamous  cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Harvitt

Dmannose excellent suppliment to help guard against uti. 

Hiprex is an antibiotic that strips the bad bacteria from bladder walls if you have chronic urinary infections. 

06 Jan 20 massive bleed. 7 feb 20 smear came back highly differentiated severe dyskolious. 14 Feb biopsies taken. 21st Feb cc cells found. 22 Feb 20 told poorly differentiated squamous cell. 28 Feb staged at 2a. Tumour is 2.4mm/9mm 6 March restaged at 3c due to 3 lymph node involvement - x1 2cm. 12 Mar 20 met oncologist - told me coronavirus will probably kill me before cc does. 18 March 20 pre scan booked.
Jazza
Jazza's picture

Thanks Harvitt for the tips about D-mannose and Hiprex.  I have used D-mannose - it apparently helps to prevent UTI caused by E.coli but is not useful for other types of bacteria.  Unfortunately it is very expensive to use this supplement in the recommended dosage and I think it has caused me some gastro-intestinal discomfort in the past.  However I use it occasionally if I think I've put myself at risk for a UTI e.g. doing too much and getting a bit dehydrated.

As mentioned above I did manage to stay clear of bladder infection last year.  It really helps for me to keep well hydrated - herbal teas such as peppermint or lemongrass and ginger tea are my go tos.

I've not tried Hiprex but will 'keep that in my back pocket' if infections start to get out of hand.

Bladderhealthuk.org offer information and support for bladder infections.

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  squamous  cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot

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