Surprising what doctors dont seem to know sometimes. Asked my doc by note (too embarrassed to mention it in person) to refer me to a continence clinic due to various problems of managing and hoping to get sorted before returning to work, only to get a letter back saying I should get back in contact with the urology specialist nurse I had previously been referred to by my urologist to oversee urodynamic tests. When I contacted her she was baffled by the doc’s suggestion as this kind of advice is not part of her role and suggested I should contact the continence service. They in turn agreed but said I must get a doctors referral. I wonder if its a question of money/budgets? Oh well, I have sent another note and hope he sorts it out now, but i can see myself getting back to work before then. Is it usual to get no guidance/information/suggestions on how to manage these problems from a GP or urologist when presenting them with your symptoms?
My MS nurse gave me a referal to the continence clinic as it is a very common problem with MS.
Do you have an MS nurse you could ask? might be quicker than the gp
Not diagnosed, seeing neurologist in December, so no MS nurse.
lncontinance is the worst part of this illness. You will have to be brave and try not to be embarrassed about it and go and see your GP.
Once you have got over this hurdle l think you will be surprised how common a condition it is. Make sure your GP understands your need to get help asap as you need to get back to work. We all understand the problem. lts embarrassing/degrading and really dents your self-confidence. And we all hate it! [ l think there is a website called bladderandbowelproblems].
hi, your urologist sounds as helpful as mine, and that is about as useful as a chocolate teapot lol. he has told me that i just have to live with things, i refuse to do this as i’m only 23.
it must depend on where you live cos my continence nurse did all my urodynamic test, although the useless urologist said they are not good enough.
Basiclaly, what i’m trying to say is that you have to keep on at them. most medical professionals seem to not be able to cope with paitents with long term, complex health issues, and have no empathy or understanding. i wish it wasn’t like this, but it is.
please pm me is you want anymore advise, love Bex xx
I really feel for you as I had bladder issues a few years ago, well before I was diagnosed but dr’s have classed this a relapse. I was really embarrassed as working at the time and felt the need to go to the toilet or like I was “leaking” all the time, but I did go to the gp who referred me to a urologist, who, as someone has already said, was as useful as a chocolate teapot. Had to monitor fluids in and out for 3 days, no fun when still working, then looked at me like I was mad, waved me aside and told me to do pelvic excercises. Not sure if things would be looked at differently now but at least there would be a reason. I hope that you do get referred to the continence clinic and get some good help and advice.
Know what you mean about professionals not being ready to deal with complex health issues. When I first saw a doctor about the leg starting to give way repeatedly, I thought I should also mention the other things that had recently begun to affect me, like loss of bladder control and reduced bowel control, because I thought they could all be connected. She more or less said Whoa! I expect to be dealing with only one issue in one consultation. Having also mentioned that I had an appointment with a urologist coming up, she said Better to leave it to him then, they know more about these things. By contrast the uro thought it needed urgent investigation.
I self refer to continence service if I need them.
What a rigmarole for you.
Just got an appointment letter for 25th. Just have to keep pushing on these things!
l read a post by someone who is thinking of having ‘Sacral Nerve Stimulator’ to control bladder - l googled it as l had not heard of it before
- its very interesting - and is something you might be interested in. lts better then the alternative!
Thanks, I have an appointment now; have sent me some forms and catalogue.All very embarrassing, have to keep a chart of various ingoings and outgoings, Catalogue looks like it is aimed at elderly folk - no disrespect.
When l had my supra-pubic catheter ‘inserted’ - about 15yrs ago - a nurse at the hospital told me about a company called Manfred Sauer.
They specialise in continence products. Google them. They have disabled/wheelchair users working for them and designing products special to our needs. They are a great team. l have used their products ever since. All on prescription. l have seen that they do a ‘Urinary Sheath’
for men. l believe it is a sheath with a tube on the end which you connect to a drainage bag. This means you do not have to be catheterised.
Hope this is of some help.