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Date of last update: 8/13/2017.

Forum Name: Urinary tract infections

Question: re:fowlers syndrome

 Della - Fri Nov 06, 2009 7:12 am

Hi there i am a 38yr old woman who was diagnosed with fowlers syndrome in Dec 2008. I have been in complete urinary retention since Jan 2008 after suffering an assult! After suffering numerous uti's and struggling to self catheterise due to pain and difficulty inserting the catheter ( apparently this is normal in fowlers syndrome), i had a suprapubic catheter inserted surgically in feb 2009.
In April 2009 i had the first stage of an operation to insert a sacral nerve neuromodulator , hopefully to restore voiding, this was the test phase and seemed to work so my consultant proceeded to the second stage of the op in May 2009 and inserted the sns implant permanently! Unfortunately due to constant urine infections and a perforation of my bladder after having to have my suprapubic catheter reinserted, i have not had any luck with the implant working and so had further surgery in oct to revise the operation, as the electrodes had slipped!!
I am now 4 wks post op and have had constant urine infections the last one was sent for mc&s and showed e-coli!! Many times tho i have the symptoms of a uti and when dipsticked it shows leucocytes, blood , nitrates etc, but when the sample is sent off it comes back as normal, just mixed organisms!!
If my implant doesnt work by Jan 2010 the plan is to remove it and i am so frightened of this happening and wondered if anyone knew of any other interventions available?
My pain is terrible i have constant pain in my urethra and bladder and although i take gabapentin 600mg tds and buscopan 10mg qds , i am still struggling to get it under control!! My gp is fantastic but is reluctant to change my medication at present due to my implant not working as he doesnt want to exacerbate this!!
My consultant is also wonderful in London but they only tend to deal with the sns implant and not the utis etc so i feel i am just been left to deal with this.
I work as a district nurse and have had alot of time off due to surgery and pain over the last year, it is having a huge affect on my quality of life and being a nurse makes it worse i am unfortunately not a very good patient and am not coping at all!!!
Please help ?!!!
Kind Regards Della
 Dr.M.Aroon kamath - Mon Nov 09, 2009 9:22 pm

User avatar Hi,
I empathize with you for the predicament you are in.
I understand you are a nurse and are well informed about "Fowler's syndrome". But, for the use of other readers who may not be that well informed, let me begin by giving a short account of what this all means.

Otherwise unexplained urinary retention in women,occurring as an isolated phenomenon has been shown to be a dysfunction of the abnormal internal urethral sphincter (which normally control the exit of the urine from the urinary bladder), as assessed by transvaginal ultrasonographic volume, electromyography, and pressure profile.

A typical patient with this disorder is likely to be between 20 and 35 years old and may have polycystic ovaries(nearly 50% have them). Frequently,the first retention episode follows a triggering event such as a surgical procedure or childbirth. The retention is unlikely to resolve but is not connected associated with other disorders.

Neuromodulation of the sacral nerves is the only intervention that has been demonstrated to restore voiding.There is, however, a high re-operation rate.

This (Neuromodulation) is an expensive and resource intensive surgical intervention not widely available.

You are lucky in that you had access to this procedure but, unlucky - as your implant failed.

To the best of my knowledge, there is no other tried and tested alternative at present.

The best for you would be to follow up with your urologist who no doubt, has more experience with this. Good luck!

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