Retention..

[missrosiex]

Hi,I'm wondering if anyone else has suffered from this.This is the third time now (in less than 6 months) I've had urine retention & catheter

I have been in a flare for around a year now,but I am on infliximab now so on the way.I don't think it has anything to do with flaring ( I have had what I would call 'mini flares' whilst been in this longgg one)

Docs don't really know,but one has said may just be to do with behcets.

However I have had other explanations, it was either due to a urine infection (which i didn't test positive for enough,although I did have some white blood and protein in it)

or they also thought it could be down to suppressed immune (im on 4 immunosuppressants)

or amitriptyline i was taking,the first time it happened was just after my amitriptyline was increased,so i dropped from 150mg to 50mg and about a week later i wasn't in retention (this could also be coincidence as I now have one again and have not changed any of my meds)

and lastly it was thought that it might have been an interaction between amitriptyline and celebrex,so I have now dropped the celebrex and this still happened.

Has anyone else suffered with urine retention? or does anyone know what might help one or cause one? fed up hate hate catheters! lol

Rosie

[devonshiredumpling]

Hi Rosie

Urethral ulcers and urine retention were the problems that led to be being investigated for the dreaded BD.

I was at work in agony because, I thought, I had yet another UTI. Then, mid-morning, I peed what looked like pure thick blood. I was scared to say the least. It was good that it happened at work because I was a midwife on the labour ward of the local District General hospital. I showed my specimen to one of the consultants (and it really did look like pure undiluted blood) and he sent me immediately to my GP because blood in the pee combined with my age (late forties at the time) meant that I was at serious risk of cancer. The long and short of it is, despite many different tests, nothing could be found.

The problem was that the problem continued - if you see what I mean. I was on permanent antibiotics and in permanent pain. The medics decided that they might as well dilate my urethra, just so that they were doing 'something.'

When I had that surgery the surgeon found that my urethra was severely narrowed as a result of scar tissue and the original reason was given as repeated UTIs. I really couldn't care less (at the time) what was the cause of the pain, just so long as they stopped it!.

So, I started daily antibiotics and was advised to keep my bladder well emptied - which I tried my best to do. I had weekly appointments with my GP, just to keep my feeling listened to I think. At one of those appointments I told him that whenever my waterworks were troubling me it coincided with joint pains. I could almost see the light bulb going on in his head as he asked me if I suffered with mouth ulcers. 'What, like these,' I said as I showed him my latest crop.

The GP got the name of the disease (syndrome then) wrong but he vaguely remembered attending a study session about a rare disease with just these symptoms. I had my diagnosis. Sadly, though, my water work problems continued; not only was their blood and pain but I was now frequently finding it difficult, if not impossible, to pee at all. As a senior labour ward midwife I had a rather in depth knowledge of the female urinary and genital tract - the urinary tract can not only be damaged during labour and delivery, a full bladder can also prolong or arrest labour. Oh yes, I knew my water works alright and I knew something was very wrong. I knew too that I should be passing at least 30 mls of wee an hour so I started measuring my output but even when it was very reduced nobody seemed very interested - it was as if they were bored with the water works now and wanted to move on.

Then one Friday just before a bank holiday weekend (the worst possible time to be admitted to hospital - skeleton staff!) I didn't pee at all. I wasn't really in pain, although I was uncomfortable, but I was scared. I made an emergency appointment with the GP for that afternoon.

My GP was on holiday so I saw a locum who didn't know me from Adam. Usually I insist on seeing my own GP because he knows my case but in the event it was good to see somebody new. The locum GP examined me and also inserted a catheter (one with a bag, not an 'in/out' type). No urine was forthcoming and she was worried that I had gone into kidney failure and sent me to A&E complete with catheter - it would have been so much better had she used the other type. In the event this catheter remained in situ for 3 bloody months!!

Casualty was busy and after waiting for 3 hours and with a now overflowing catheter bag I walked out. I obviously wasn't in kidney failure! But the next day I stopped peeing again and was admitted to hospital as an emergency. As before, I started to pass urine normally after about 24 hours. I was in hospital for four days and nothing was found although the surgeon did see scar tissue, indicative of ulcers, on the walls of my bladder and my urethra. And once again my urethra was severely narrowed to 'almost closed' by this scar tissue despite it having been dilated just 12 to 18 months previously.

So I didn't have cancer and I didn't have kidney failure, nope; it seemed the difficulty, sometimes impossibility, of peeing was down to the BD, or at least to its ulcers. It was decided that I should start intermittent self-catheterisation, known as ISC; the theory was that this would not only allow me to pass urine efficiently, thus preventing repeated infection, but the regular passing of a catheter would prevent any further narrowing of the urethra.

And it worked/works! I've been self-catheterising three to four times a day for several years now and it's turned my life around. I still have the occasional infection, despite still taking daily preventative antibiotics, and I still get urethral ulcers (my most feared BD symptom cos it's agony, like peeing razor blades) but I would say the incidence has been reduced by around 80%.

I could have just said that, yes, I shared your problem but I wanted you to know exactly the process I went through just in case you follow a similar path. My best advice is that you should make a nuisance of yourself if necessary because, once it's confirmed that you don't have cancer or other life-limiting condition, you will likely drop to the bottom of the priority list

I hope my rambling waffle helps a bit and wish you fountains of pee...

Di

[MrsR_75 in reply to devonshiredumpling]

Wow, what a difficult time you had. In 2004 I was diagnosed with chronic urethritis and had 2 cystoscopy and dilations. Was put on imipramine and near permanent antibiotics. When I became ill whilst pregnant last year following my BD diagnosis I was sent to St Thomas's. Catherine Nelson-Piercy stated that she doubted the chronic urethritis diagnosis and stopped the imipramine (felt a bit miffed about that after taking it for 8 years probably unnecessarily!!!). She believes it was always BD related urethral problems.

I still get quite a bit of pain and discomfort. I have recently discovered "Waterfall" which is D-Mannose. Had never heard of it. What a difference it has made. I take the "stress dose" every 3 hours if I get serious discomfort and it really helps me. If only I'd known about this for the last decade!!!

[Dmartin138]

ive had retention from two issues. Ulcerations in the urethra and then also the medications they were putting me on. The more meds they added the more side effects and I would have to get catheters or lean weird just to urinate. A big thing was with SSRIS, muscle relaxers(relax the abdomen muscles and muscles id use to push out the urine and couldnt and also same thing with pain medications. Also having a flare can create this due to lack of blood and such. I was not as much help as the other posts but those are a few of the experiences. I have had urinary retention for more than one reason so. Hope that is some help.

[TaraBella]

I have urinary retention, too. It is supposed to be "rare"in women. I am told I have a neurogenic bladder and it doesnt contract well. Also, the sphincter muscle has increased tone. I was recently prescribed catheters and advised to self cath several times a day. The cystoscopy exam was normal, no scarring or ulcers.

I was also recently prescribed Cymbalta for neuropathic pain relief, I took one pill and I couldn't pee at all for the next 16 hours. I thought my urinary retention was due to a spinal cord problem that doesn't show up on MRI, but it looks like I am not alone here. I don't think this is listed anywhere as a symptom of Behcet's.

[Dmartin138 in reply to TaraBella]

Cymbalta was a drug that made me have to get a catheter. It has horrible urinary retention side effects. TaraBella. Just a heads up for that one. You were not alone with that one.

[devonshiredumpling in reply to TaraBella]

Tara (?) I think there are loads of symptoms that aren't 'officially' recognised but that the majority of us suffer from. The first one that springs to mind is sweats - and not just at night-time. That's the beauty of this forum, you think you're alone and slowly going mad, then you find that there are dozens of people experiencing exactly the same thing! I find that comforting.

di

[skybluepink in reply to TaraBella]

Hi, how are you doing now ? I too have a neurogenic bladder causing utis acute 3 weekly .However I can't tolerate catheterisation [ lip-lymphoedema ] so dependent on targeted antibiotics that is many problems don't show up on Testing like my angina [ heart] spasms .Had to die 3x before given angioplasty [ microvascular procedure?} to revive ?! Then left in limbo .When left like this i find acupuncture & reflexology can assist .I have to self fund. Some MS therapy centres deal with associated conditions which are similar too.i Find this relieves my anxiety a little as suspect the neurological aspect - abnormal EEG will eventually lead to MID that my Late Mother had severely affecting function i.e.: TIAs !

[bailey23]

Hi

I am waiting for my appointment for my little op on at the moment. I have to have a rod put up my bladder to open up my urethra. I have trouble peeing and after some tests they said I was retaining urine. I havent had to self catheterise yet but sometimes feel so frustrated cos I know I have urine in me but it doesn't want to come out. The Urologist I saw said it could have been that when I had 2 years of genital ulcers, before my diagnosis, my spincter in my bladder got so used to not wating to pee because of the pain my muscles were not expanding enough to allow urine out. It makes sense cos it was so painful to pee. I have been put on Tamulosin to help my muscles relax and although it is helping I still need the operation. I do believe that us BD lads and ladies have enough to worry about without having to go through these problems.

Anyway must dash as surprise surprise I need a pee!!!!!

Hugs

Angela

xx

[TaraBella]

Di,

Yes, I have sweats, too. I never was a sweaty person, until,this flare started 8 months ago, i seem to have other signs of autonomic dysfunction as well, like tachycardia, gastroparesis, and neurogenic bowel, along with the urinary retention, My brain MRI is normal, so they can't find the cause of all of this. I just read, maybe on this Bechet's board, that a perfusion MRI may show brain involvement when a regular MRI does not. I will have to print out the study and show it to my Doctors.