I'm sure many of you, like me, have been dealing with incontinence and the associated issues for a long time. And, like me, I'm sure you have had your share of disappointments in trying to obtain medical care for it.
I don't think doctors and their staff mean to be uncaring or insensitive. I know they are very busy. But that is no excuse for a lack of care which may result in a life‑threatening situation. It does seem sometimes like some of them feel their patients are there to serve the doctors and their staff and not the other way around.
Let me illustrate by sharing a couple stories. I promise these are true, I have in no way embellished these.
A relative of mine, who holds a medical degree at the master's level, underwent a laparoscopic colon resection. During the surgery the staple gun, used to reconnect the cut ends of the colon, malfunctioned and the doctor had to join the ends (called an anastomosis) with hand sutures. The surgery was not converted to an open incision: the doctor performed the sutures through the scope. One month after the surgery my relative kept having what they knew to be too much pain. They kept calling the doctor's office to let them know, but was ignored. Shortly thereafter this individual collapsed at home and had to be rush to the emergency room. Undergoing surgical exploration, they were found to have a raging abdominal infection. The surgeon (not the same one) discovered the anastomosis had been leaking. They survived the surgery but had to have a colostomy for six months while the intestinal tract healed. Had the doctor listened to begin with, they probably would not have had to endure this. As a medical professional, they knew they were in trouble, but could not get anyone to listen.
The husband of a co-worker had several "funny" spots on his scalp (he is bald) about which he asked his family doctor several times over a two-year period. The doctor always insisted there was nothing to be concerned about. My co-worker has a sister who is a nurse and they asked her to look at the spots. She told them immediately to schedule a visit with a dermatologist, where he was diagnosed with skin cancer. In less than a week he underwent a surgery that lasted almost three hours to remove the cancerous lesions.
One issue I deal with almost daily is voiding pain. If I empty completely, I experience pain somewhere deep that is all of 9 to 10 on a 10 point scale. I've written about this many times.
I was seeking treatment at a local pain clinic for this voiding pain (and the "e" pain associated with it) last summer. I had a caudal nerve block to treat the pain. The block was marginally successful: I did have a few days in which I could void pain free. Another caudal nerve block was immediately scheduled, and was to be performed the end of August. I made arrangements to be there (even "punted" on seeing Auburn and Lousiana-Monroe play!). Everything off, gown on, IV started and waited for the doctor. He came, sat down, and told me he had decided not to do the block! In his opinion there was not enough pain relief to warrant another attempt. That's his call but he knew that before I ever got there. A simple phone from someone on his staff would have saved me a lot of trouble. Needless to say, I was very angry and disappointed. Because I can control the pain by not emptying when I void (and engaging in a certain other activity), he questioned if this was a serious impact on my quality of life. I responded that to me it was. Wish I'd had the courage to point out that my "e" pain is a serious quality of life issue!
We all have stories like these. When we experience or hear about situations like these it makes it very difficult to continue seeking care, particularly when the condition in not life-threatening, like incontinence or chronic pain.
If you can't get the doctor to listen, try expressing your concerns and frustrations in a letter to your doctor. Bear in mind however, that most doctors will not acknowledge the letter and may not read it. Letters sent this way are supposed to be made part of your medical record, but this rarely happens.
If you do write a letter, try to avoid putting the doctor's name on the envelope. If the doctor is in a practice that has a name such as "North Wiener Town Urology," address the envelope to the practice but not to the doctor. If you address it to the doctor, it will be placed on their desk unopened. When they see that it is from a patient, they will probably chuck in the trash. Remember, they can always claim they never received it.
If the letter is addressed to the practice, someone will have to open the envelope to see what's in it. Still doesn't mean the doctor will see it, but maybe it will be made a part of your record, for whatever that's worth. Remember: Letter writing is cathartic for the patient, not for affecting any improvement in treatment or care.
If you are still being ignored, try to find another doctor. If it becomes evident that you must change, request your records. Not a copy, the original. They are yours. Doctors don't like to give them up, but they have too if you insist. Keep trying until you find one that listens.
I don't mean to be such a downer. In my case I have been seeing my current urologist for almost three years, and it is quite evident that she is at a loss on how to treat my voiding pain. But she has been very helpful in treating my urge incontinence, so maybe that has to be enough. Kind of a shame, though!
The good news is I have transferred to the pain clinic at the hospital where she practices, so hopefully, between her the pain specialist, I can get some relief!
Published On: February 27, 2009