LIVING IN HELL

[ZRHONDA]

Has anyone else lost thier bladder? Mine won't empty st as ll anymore. I got toxic and delirious. I had two liters they drained it was awful. Now I have to wear a catheter bag. Maybe permanently.I feel like just giving up completely. I'm so depressed.

[lupus-support1 Administrator]

I am very sorry to read this awful condition. There are a number of conditions which include Interstitial cystitis, lupus cystitis (inflammation of the bladder) etc which can be very painful. It sounds as if your problem is not being able to void your bladder. IC is also called painful bladder syndrome — is a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain. The pain ranges from mild discomfort to severe.

Your bladder is a hollow, muscular organ that stores urine. The bladder expands until it's full and then signals your brain that it's time to urinate, communicating through the pelvic nerves. This creates the urge to urinate for most people.

With interstitial cystitis, these signals get mixed up — you feel the need to urinate more often and with smaller volumes of urine than most people.

Interstitial cystitis most often affects women and can have a long-lasting impact on quality of life. Although there's no cure, medications and other therapies may offer relief.

I presume you have had a cystoscopy. What did your urologist say to you and the prognosis? I can imagine how shocking it must feel to have a catheter bag. But, I amnot the one who has had to wear this bag - it's about you and your feelings.

Urinary retention is the inability to empty the bladder completely. Urinary retention can be acute or chronic. Acute urinary retention happens suddenly and lasts only a short time. People with acute urinary retention cannot urinate at all, even though they have a full bladder. Acute urinary retention, a potentially life-threatening medical condition, requires immediate emergency treatment. Acute urinary retention can cause great discomfort or pain.

Chronic urinary retention (ischuria) can be a long-lasting medical condition. People with chronic urinary retention can urinate. However, they do not completely empty all of the urine from their bladders. Often people are not even aware they have this condition until they develop another problem, such as urinary incontinence -- loss of bladder control, resulting in the accidental loss of urine -- or a urinary tract infection (UTI), an illness caused by harmful bacteria growing in the urinary tract.

What has caused this urinary retention? Is it acute or chronic? Did it happen suddenly or have you had bladder problems for a while? Here are 2 references which may be helpful to you:

patient.info/doctor/acute-u...

patient.info/doctor/chronic...

What I can offer is some help to you ie non-medical as I am not a medical doctor, but I am a psychotherapist. It is "normal" to feel anxious, depressed, angry or any other feelings. Do you have a supportive family? Or good friends to whom you can talk freely? This is very personal, intimate and strikes at the heart of being a woman. I would also recommend talking with your doctor to get more information and perhaps ask to speak to a counsellor. It is important to feel you have some control over what is happening to you.

Please feel free to contact me. As this is very personal, you may prefer a more private setting. You can also email me: roz [at] [lupus-support] [dot] [org] [dot] [uk]

With good wishes,

Ros

[ZRHONDA in reply to lupus-support1]

The Doctor said We May Be Able To Retrain My Bladder But Hes not sure if it will come back. I've had a full hysterectomy. So I've had some on and off issues with overactive bladder. But this time I went over 18 hours without being able to go. I got delerious ad dementia. I had so much urine backed up. They placed a Foley catheter and drained over 2 liters. They removed the foley and said if I don't pee in 4 hours they would cath me again. Unfortunately I came home with the foley leg bag. I hate it! The lupus is killing me one organ at a time; it's gotten my heart, my lungs, my stomach and now my bladder. I'm so depressed I can't stand it anymore.

[lupus-support1 Administrator in reply to ZRHONDA]

I have to sign off now, but I will try and speak with you tomorrow.

[lupus-support1 Administrator]

I understand that your problem is not related to lupus but from other reasons, nevertheless, this is very unpleasant and how can you feel feminine having a Foley? No wonder you are feeling depressed. It must have been a shock for you.

I think it would be a good idea to speak with your doctor again. I suspect that it was difficult to take in everything that was said to you. I am not a medical doctor, but there are resources which explains what you can do to help retrain your bladder, as well as medication for the pain and discomfort.

As I wrote yesterday, it would be helpful if you could talk to someone about what has happened to you. Lupus is not just a physical problem;it affects all of us emotionally, psychologically. It does not mean you are weak. On the contrary, it is very normal.

When are you seeing your urologist again?

With good wishes,

Ros