A breif urology history

 I am a 33 year old female who lives in paisley

I was born with bilateral kidney reflux but it wasn’t picked up on till I was 3 year old after many utis and kidney infections requiring many hospital stays but by the time it was fond the damage had been done to my right kidney which was severely scarred.

At age 4 the infections were getting worse and worse so was the kidney reflux so age 4 I had my first bladder surgery I had my ureters Criss crossed so my left ureter went to my right kidney and my right ureter to my left kidney to try to stop the bilateral kidney reflux but it didn’t work as well as expected. I spent quiet a lot of my childhood in and out of hospital with infections often needing iv antibiotics which continued into my teens

At age 19 I was having more infections and getting a lot of back pain around my right side and I was referred to a urologist and after some tests we found out my right kidney was only working at 2% and was probably the cause of the increased infections so it was decided it would be best to remove the kidney before it started to effect my left kidney so in November 2012 I had a total right nephrectomy and it did help with infections I still got them now and then but not as many as before.

But sadly it lasted about a year and they slowly started to increase again more and more then in 2015 I was admitted to hospital urosepsis and while in hospital I noticed I was urinating much so a bladder scan was done and there was still a large amount of urine still in my bladder so they put a catheter in to empty it and removed it again the doctor said it could just be the bad infection causing problems so we waited to see as I improved then one day I didn’t go at all not even a drop all day by 6pm that night I was in so much pain and swollen they scanned my bladder again and this time there was a whopping 2liters in my bladder I didn’t have the urge to go to the toilet just sever pain at this point they fitted a foley catheter until I saw the urology nurse the next day to learn how to self catheterise 20th march 2015 i went in to full blown retention the day I had my last natural wee the day before

I was taught how to do (ISC) intermittent self catheterisation and to wait to have follow up tests to see why I couldn’t urinate I managed to do this for a few months but it was incredibly painful it caused bleeding more infections it would often get stuck in my urethra or couldn’t get it to go into my urethra after a while it became so difficult to do I had to have a foley catheter fitted permanently hoping it wouldn’t be as painful but it was even more painful I couldn’t sit down for more then 5 minutes it was so intense and caused even more infections and hospitsal visits.

During this time I had a urodynamics test which revealed my bladder wasn’t contracting and basically non functioning at all after these results it was decided I needed to see specialist urologist that deal with urinary retention and it would be a long wait due to the waiting lists for specialist.

One day one of my closes friends sent me a link saying you have all theses symptoms and you fit the condition and sound just like what is happening to me and it is called fowlers syndrome which is rare only effects women typically between their 20s and 30s and effects around two in a million women

Fowlers syndrome is where the urethral sphincter clamps shut making it extremely difficult to urinate or not at all

This can happen spontaneously or following an operative procedure (gynaecological, urological or even ENT) or following childbirth. there is not cure sadly

After months of the extremely painful foley catheter and still while till I see the urology specialist it was recommended I get a suprapubic catheter( a catheter inserted into the bladder through the stomach)they said it may help reduce the infections removing the foley catheter so in December 2015 I had my suprapubic catheter fitted.

In January 2016 I saw the urology specialist and after another urodynamics test it was confirmed I had fowlers syndrome just like my friend said and his treatment suggestion was to try the sacral nerve stimulator to tell my bladder to contract but after two failed trials he referred me to my current specialist that specialises in surgical options

At this point was in and out of hospital so much with kidney infections and sepsis a good few times and had to wait a while to see the new specialist urologist

After he did more tests he decided he wanted to do a procedure called the mitroffanof but I had to wait as I was currently waiting for a open total abdominal hysterectomy and heal from that at age26 and needed to loose some weight for the bladder surgery.

Then in November 2021 I went in to surgery for 10 hours to have the mitroffanof procedure but sadly a few weeks later it failed.by now my infections were starting get out of control and increasing in frequency and becoming more difficult to treat. After the mitroffanof failed I had the option to have the major surgery again to have it redone which a high rate of it failing again or I could have my bladder removed and have a stoma created

So on the 24th of may 2022 I went into theatre at the Glasgow royal infirmary for my 12 hour stoma surgery I severely overgrow scar tissue so my surgery’s usually a lot lot longer I called my stoma ariel after the little mermaid

While my infections haven’t been helped by having my bladder removed Iv been having infections every 2 to 3 weeks for the past 3 years and my only remaining kidney is functioning around 36%now due to the constant infections that we cant stop we have tried every single treatment out there for utis and nothing is working so we are out of options and now trying anything but it also has risks to the kidney and sadly due to this when my kidney fails I will then need to live on dialysis as I am not eligible for transplant due to the infections and that either my body wouldn’t be strong enough and the rejection medication would kill me

Nut even after all that having my urostomy made was the best decision I have ever made I love ariel everyday for keeping me alive

THANK YOU FOR READING BIG UPDATE IN A FEW WEEKS XXXX