urinary retention problems..new trauma....help!!!!!!

[wornout]

It looks like I am having a urinary retention problem. After my cysto over 200cc were found after I was able to go pee. After overdistending my bladder, and assumed "okay to go", my bladder was still retaining 200 mls. Bladder starts bleeding back to the uro...381 mls retained, foley...four days later still retaining 200mls. Was told good to go. This uro is one of those "famous uros", and I don't think he cares for me personally because I question him. What should be done? Last time this was checked I was retaining < than 10 cc. I looked on the internet,a nd they say anything over 100 cc/ mls warrants furthur investigation. Please advise. Today I had so much pain, it was horrible. I took 3 stronger than Vicodin, and almost fell asleep driving home!!! help

[Kara]

Wornout,

I am the queen of retention!!

Here's a little information for you and how I solved this terrible problem.

I’ve tried many medications. This is what happened with the following meds: Dicyclomine, Ditropan, Ditropan XL, Detrol, Detrol LA, Pyridium, Pyridium Plus, Levsin, Nortriptyline, and over 62.5mg of Elavil; all caused this rip roaring NIGHTMARE they call “retention” (I call it HELL). It feels like someone has ripped your fingernails off, one by one. It starts out with the urgency. I try to go to the bathroom to relieve it, but……….I CAN’T GO………….I CAN’T GO AND I’M IN PAIN! I’ll sit in the bathroom for 10-20 minutes and try to get something to come out. Even just a little drop might help. I try turning off the light (this is so I can focus), running water in the sink, dribbling warm water down the pubic area, deep breathing, holding my knees up to my head, pushing on the bladder, turning the light back on and then I repeat some of these things.Thank God I have my own bathroom with a door that locks. I go back to my desk and try to work again. I can’t think about anything because the pain gets worse and worse. I try to go every few minutes but nothing will come out. Minute by minute I grow more and more uneasy. I have to tell my supervisor that I have to leave because I can’t go to the bathroom. She looks at me like I’m insane, probably because I do this just about every 2-3 weeks. My co-workers say to me, “well you don’t look sick?” I know I don’t look sick on the outside, but there’s a raging battle going on inside of me! My next stop is either the Emergency Room or my doctor’s office to get catheterized. I’ve tried to do this myself but it hurts too much! My urethra is always raw and sensitive, even to the slightest touch. It feels like I’m shoving a knife up there! I feel more comfortable leaving it to the professionals. The pain is relieved while the catheter is in, although, a few days after the catheter comes out the whole cycle starts over again. I have to call in sick when the retention happens. I try to go back to work to do my job but it’s damn hard when this disease haunts me, constantly. My bladder pain is 100% relieved by having the Foley catheter in. For the past 2 months, I have been most grateful for having the luxury of no pain, no urgency, no frequency, and no retention. It’s been great not having to run to the bathroom a million times a day. For the first time in years, I have been able to sleep 8 hours without moving and without pain! My body feels peaceful. I’ve been able to drink and eat everything. It’s been a nice rest. If it wasn’t so unattractive and so limiting, I would keep it in forever. I don’t want to take it out!

Other Medications tried that had too many side effects or just didn't work: Elmiron, Cysta-Q, L-Arginine, Aloe-Vera, Cardura -racing heart, DMSO, Prelief -urgency and frequency Vioxx Celebrex Tagamet Claritin Vistaril -severe depression Trazodone - severe depression Xanax - severe depression Imipramine - severe urgency and frequency Nortriptyline - retention, depression, anger Ibuprofen- itching and mania Oxycodone- itching and mania Hydrocodone- itching and mania Hydromorphone-itching and mania Meperidine- itching and mania Neurontin urgency and frequency Wellbutrin-panic attacks and agitation, Celexa-myoclonic seizures, Effexor-myoclonic seizures, Depkote-severe heartburn. Procedures done: Cystoscopies, Biopsies, Hydrodistentions, IVP’s, DMSO, Bladder Scans, X-Rays, Laparoscopy, Interstim Trial, Interstim Sugery, Lumbar Sympathetic Block, Lumbar Epidural Block, Urethral Dilatations, Stricture Surgery, Massage, Acupuncture, Allergy Elimination Treatments.

So...........I am having the urine in my bladder diverted. I am having my bladder removed and reconstucted. "Orthotopic Diversion: This relatively new procedure is being performed in selected surgical centers. This is a type of diversion in which the bladder is removed, and a new bladder, constructed from a bowel segment, is connected to the urethra, replacing the removed bladder. Patients then void through the normal urethral channel without the necessity of a catheter or bag. The development of urinary incontinence is one possible drawback of this procedure."

I’m so sorry you’re having such a rough time with Interstitial Cystitis and Retention. I recognize your pain and I hurt for you. You must be so exhausted and wish someone could take it all away. I hope you can find some time to heal and rest. Maybe even get some relief from the retention. It takes so much effort to take care of this IC. Whatever else you’re feeling, please know that you are not suffering alone.


Kara

[ICNDonna]

You didn't mention when you had your cysto. Did you also have a hydrodistention? Sometimes when we are recovering from surgery, there can be swelling that interferes with adequate urination. The only times I have ever had retention were after a hydrodistention. After my first one, it took me about two weeks before I could urinate well.

It's never good to strain to urinate.

Sending healing thoughts,
Donna

[ICNDonna]

I should mention that Kara is a very unusual case. Many of us do have problems with some medications --- Kara has more sensitivities to meds than anyone I have ever met and I feel sympathy for her.

You may have much better luck with some of the medications that relax the bladder to allow for easier urination.

Hugs,
Donna

[emilyrose197377]

I have the same problem as you problems with urinary retention and pain. I am on urecholine but it is not helping much.

[emilyrose197377]

I was just wondering if some medicines don't cause urinary retention.

[rubjen]

Yes Some Of Those Medicines Do Cause Urinary Retention.check Your Meds With A Pdr Or The Med Book,better Still Use The Internet.you Would Be Suprized At The Amount Of Info You Can Find. I Don't Have This Problem But I Under Stand The Pain You Can Go Thru.when I Got My Interstim Placed I Could Not Urinste An Was Begging For Help. My Uro Came To Check Up On Me And Told The Nurse To Cath Me As My Bladder Only Holds 50 To 75 Cc An They Had Been Giving Me Iv's For The Last 3 Hours. What A Relief That Was. I Do Have A Hard Time Starting The Flow Sometimes But I Have To Focus An Relax. That Is Not Often.
Ruby Jean

[dminton]

To kara:

Wow, that is exciting! I hope things smooth out for you and please keep us posted on how it all goes. There are certainly times when I feel I am headed in the direction of just getting rid of the darned bladder altogether. I'm glad technology has expanded to incorporate this new technique.

Diana.

[emilyrose197377]

I have the same problem usually people with Ic has the symptom they always have to go pee I am the other way around I retain a lot of urine and have a lot of problem fully emptying my bladder. even meds don't help me much. I have the urinary retention along with the sharp stabbing pain in my lower abdomen in pelvic area and a lot of burning. But my dx is complicated I have Ic and neurogenic bladder and also Endometerosis. I would suggest talking to your dr. about this maybe some medication can help. Hope you feel better soon.