Hi all,
I was just wondering how many people on here have bladder problems from FND and have to use a catheter? I have had chronic urinary retention for years unknown cause - I still need to have some more tests now due to some complications - but I’m guessing it’s another FND thing!? Anyone else have to self-cath?
Best wishes to everyone
Xxx
Thank you ;0)
Yes I to have urinary retention but I have fowlers syndrome which is a bladder condition but I self cathterise now due to fowlers syndrome I have fnd also and many more conditions hope this helps best wishes claire
I had that severely turns out one of my medications was causing it
Thank you I’ve been self cathing for years but now every time I do I’m bleeding so I have an indwelling catheter for now - I’m waiting for another cystoscopy. I’m sorry to hear you have so much to contend with best wishes back
Yep and lovely weird world of FND has also given me Irritable Bladder Syndrome (think retention and this would be mutually exclusive but not in FND world) and Irritable Bowel Syndrome. Wow got the set - not that I was looking.
this is my first post - just found this link. I was diagnosed with PMR and GCA November 2017. I generally keep fit walking 7 miles daily. Dec 2018 I started having difficulty urinating. I have now been told I am suffering from bladder retention - 900ml to begin with. No reason has been given for this - have had cystoscope. After having a cathereter in permanently for 4 months, I am now coping with ISC. I am now wondering how long I may have to do this - will my bladder ever start working again? Seeking some guidance from your experiences.
jantayl
I have been 'reclassified' as having functional neurology (note, not FND), after suffering from,and being treated for MS for over 20 years. I have a combination of incontinence and retention (I am prescribed ISC). My Urologist is planning to use Botox, which will make me reliant on ISC, but which will keep me dry. This new diagnosis was communicated to my GP in a scathing letter sent by my new Neurologist. It was so rude that my GP asked if i wanted to make a complaint,but cautioned that it might affect my future treatment. Well,i didn't complain,but regardless,my treatment has been affected. Regardless of classification,your GP should investigate and treat each symptom inn its own. I've just had word about my DLA stopping,and I've phoned in a PIP claim,but I'm worried sick about it.
I'm a doctor and psychologist,and can't figure out how someone can 'invent' incontinence, or the optic neuritis, the latter being part of the original diagnosis from a Visual Evoked Potential test.
My message is be persistent and ask the questions 'what' and 'why'. What is causing this symptom,and why don't i have a normal life?
I too. I’ve just recently been put onto self catheterisation. It is something that can relieve retention. One of my docs said that it can help to retrain. I have a regimen where I have to go regardless of how I’m feeling, every 3-4 hours and I have to try first then use the bag after. It is a peculiar sensation. What is bagged is measured and then you might find it’s different at various times of the day. It makes you kind of obsessive over millilitres for a bit of your life. One thing that has really helped me is, not focusing on it. I’ve not had to use the bag all the time either. It’s a morning thing for me. The rest of the day I manage without a bag. It’s good for your kidneys to relieve the bladder and less infections. Try not to ignore any signals at all. When you need to go. Go. In life we tend to put it off if it means pain in movement or life itself gets in the way. Don’t let it. Just go to the toilet.
Kind regards, Dom
Hi there
I too have been suffering from urine retention and have been told that I may have to start self- cath. The neurologist said i probably have a neurogenic bladder. I guess due to fnd he diagnosed me with. I have been referred to urology though but only because I do have a lumber Spondylolisthesis so they are just checking it's not that that's causing my bladder problems, they want to check my nerves in my bladder area first before I start using a self- catheter. Hope that helps
I have never self Cath'd! I wouldn't know the first thing 
But I have has urinary problems since birth. I still don't manage it well and it has affected my life in every possible way. I'd love to know more about managing an otherwise embarrassing issue, especially as a young person under 30.
Hi,
I think we share the same issues. I've had urinary issues for years, loads of UTIs followed by chronic urinary retention. I started seeing someone in the urology department and have had bladder and kidney scans, cystoscopy and was about to have an urgent urodynamic test just before march this year. Everything got put on hold because of the lock down. I phoned last week to chase it up and was told my consultant had left and it would seem my notes had just been left. These have now been passed to the new consultant and I'm waiting to hear back. I have no formal diagnosis, my GP said CUR based on what results I'd had. The old consultant was going to start me on self cath but wanted to wait for urodynamics first! So I've spent a very uncomfortable 9 months. I was terrified of the thought of self catheterisation, I felt ill just thinking about it but now I just want my life back to something resembling normal. I thought it could be caused by medication I was taking but I've been free of that for 12 months and still the same. Hope you have had some answers to your issues. It can feel very lonely at times when you don't know anyone in the same boat 
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