I don't currently have a pain management doctor, but I'm looking into it.
I suppose I'll give a warning in advance that my physical issues could be considered gross or uncomfortable. I don't know; I always feel inclined to give a heads-up before talking about my symptoms.
The symptoms started really showing themselves when I was a teen, but there were signs even before then. My digestive system is really messed up, and most foods cause me a lot of issues and pain.
My biggest problem currently is my bladder. It really doesn't function properly. I've had to go to the hospital countless times due to retaining dangerous amounts of urine, and it's gotten to the point where I need a catheter at pretty much all times. But I have unfortunately experienced malpractice with doctors and nurses, with them not putting in the catheters correctly or offices/hospitals getting inexperienced nurses to catheterize me. And as a result, I believe I have permanent bladder damage.
My bladder is incredibly sensitive; even just laying or sitting in the wrong positions causes me awful pain. I have regular awful spasms, and on the occasions where my catheters stop working and I have to try to urinate on my own for a short period, it feels like I'm being stabbed. And the damage has also caused the monthly catheter exchanges to be indescribably painful. It's horrible.
Recently, the hospital I go to for my monthly exchanges has been struggling to remove my catheters. I have a large bladder stone that they suspect is getting in the way, but I'm worried that there might be scar tissue that could be making it difficult, as well. I'm supposed to get the stone removed soon, and I'm going to bring up that concern with my urologist, but I just feel so hopeless. I can't live the rest of my life like this.
(Sorry if I messed anything up; I'm not used to sending stuff on here.)
Damn, that is a lot to deal with! I don't think anyone would blame you for being depressed in this situation. Do your doctors have any idea what has been causing your issues? Have they discussed any surgical interventions?
I am very sorry to hear that you have had bad experiences with nurses. Urinary catheterization is treated as a core skill because it is used so often, and care is probably not taken to be careful in complicated cases. In recent years, there has also been a push to perform intermittent/straight caths and to avoid indwelling/Foley caths whenever possible. This has been done to reduce the incidence of urinary tract infections, which kill many every year when they progress to sepsis.
However, this policy has the unfortunate consequence of causing us to insert more often, which comes with its own risks. I have seen firsthand a reluctance to place an indwelling cath in patients with persistent retention until we had already catch'd them several times. They still ended up with a Foley in the end, defeating the purpose of the policy in the first place. Nurses can argue otherwise and file incident reports, but we cannot override the doctor's orders to place a Foley on our own initiative.
During my school training, I turned down an offer to cath a patient because I had not observed or done one on a male before. Even though men are generally considered easier, he was an older man with an enlarged prostate and a traumatic spinal cord injury. Long story short, I was glad that I sat that one out, as he had a lot of difficulty even with the best nurse on the unit.
I haven't graduated yet, but it sounds to me like you may have developed a sticture from the trauma of placing the catheters. This would make them difficult to remove as well.
What does your transportation and insurance look like? Do you have any choice as to which hospital sees you? To get a better shot at experienced staff, a rich teaching hospital would be the best bet. Yes, they have residents who are learning the trade there, hence the "teaching" descriptor, but they generally retain and train the best staff. Specialists are more plentiful. They are able to better handle unusual or complex medical needs. Student nurses generally can't be avoided, but it is your right as a patient to refuse them, and it would make more than enough sense given your experience.
I would also recommend seeking out a consult with palliative care. They are not just there for end-of-life. Their focus is quality of life first and foremost and, working with your doctors, can discuss with you which level of functioning may be achievable. This will help you sort out surgical and other aggressive interventions if applicable.
