Octopi
Contributor
- Messages
- 16
- Role
- Diaper Lover
- Incontinent
My Backstory and issue:
My U-IC was caused by a surgery I had last year that addressed a chronic issue I had after a traumatic event that affected my pelvic floor and urinary tract. I have pretty constant small amounts of leakage that quickly becomes worse with movement (and is considered a common side effect of the surgery).
I’ve only just started last month working with a pelvic floor specialist to be sure that I recover my pelvic floor after the surgery and they also seemed to think there was a very slim chance that my incontinence might improve with re-strengthening those muscles. Though the way it is going, they have told me to manage my expectations.
Some urinary tract irritation is “normal” when you recover from such an invasive surgery (as well as a few medications associated with that recovery) my doctors have kept notation of my symptoms involving pain and have done their best to only adjust one medication at a time to figure out what is going on.
To Make Matters Worse:
I am working with a urologist, however I don’t feel that our appointments are frequent enough and he doesn’t have the availability (nor I the funds- I’m referencing US healthcare) to make visits more frequent. I am also fairly rural so my options for another urologist are unfortunately limited. His team has made it clear that they want to help, and gave me their direct work email so I can email them directly with any concerns. There is only so much he can do over email though.
The Problem(s):
I have been treated and tested for UTIs several times now (multiple types of tests, always negative, and antibiotics don’t seem to help). The doctors seem to have been under the impression that perhaps due to the surgery I was extremely sensitive and might have been detecting an infection early. Or that maybe they were being caused by my being new to this level of a U-IC lifestyle. We have also explored the possibility of allergies to certain ingredients that might be in pull ups, but can’t seem to find a connection.
At this point I am experiencing near constant UTI symptoms, worse in the AM despite hydrating properly. I’ve been told they simply can’t keep me on the pain relief medication for UTIs (phenazopyridine based I believe?) any longer, they mentioned how it can hurt my kidneys.
What made this appointment I had with my pcp and urologist even more devastating, was that they also mentioned (gently) that occasionally surgery in such a sensitive area can cause scar tissue/nerve problems that can present in pain. They don’t know for sure that this is what is happening, however they seem to be prepping me mentally in case it is.
TLDR Version:
I have near constant UTI symptoms, worse in the morning despite proper hydration. I also have a wonderful care team that is doing their best, and upcoming appointments with them over the next three months. However, I must stop the UTI/bladder pain relief (non opioid) for the sake of my kidneys.
The Request for Your Opinion:
I would love some insight into how others have coped with this pain, my mental health team has suggested “mindfulness” which I already practiced but in my experience can only go so far. At this point I am struggling pretty badly. The recovery has been a ton of work and the pain (while not excruciating) has worn me down as it is pretty constant. So any advice, or even personal experiences would be appreciated!
I don’t want anyone to have experienced this, but if you have I think it would be much easier on me mentally to know that someone understands how this feels. I have a partner who is wonderfully supportive and he is terribly sad that I am so uncomfortable all the time. I feel isolated despite his support, as he has lived an extremely healthy/pain-free life and cannot begin to understand how I feel. (He actively tries to. It’s just he is a lucky guy who can count the number of times he has been sick on two hands.)
Thank you for reading this novel, I hope that it finds you well and happy in this new year!
My U-IC was caused by a surgery I had last year that addressed a chronic issue I had after a traumatic event that affected my pelvic floor and urinary tract. I have pretty constant small amounts of leakage that quickly becomes worse with movement (and is considered a common side effect of the surgery).
I’ve only just started last month working with a pelvic floor specialist to be sure that I recover my pelvic floor after the surgery and they also seemed to think there was a very slim chance that my incontinence might improve with re-strengthening those muscles. Though the way it is going, they have told me to manage my expectations.
Some urinary tract irritation is “normal” when you recover from such an invasive surgery (as well as a few medications associated with that recovery) my doctors have kept notation of my symptoms involving pain and have done their best to only adjust one medication at a time to figure out what is going on.
To Make Matters Worse:
I am working with a urologist, however I don’t feel that our appointments are frequent enough and he doesn’t have the availability (nor I the funds- I’m referencing US healthcare) to make visits more frequent. I am also fairly rural so my options for another urologist are unfortunately limited. His team has made it clear that they want to help, and gave me their direct work email so I can email them directly with any concerns. There is only so much he can do over email though.
The Problem(s):
I have been treated and tested for UTIs several times now (multiple types of tests, always negative, and antibiotics don’t seem to help). The doctors seem to have been under the impression that perhaps due to the surgery I was extremely sensitive and might have been detecting an infection early. Or that maybe they were being caused by my being new to this level of a U-IC lifestyle. We have also explored the possibility of allergies to certain ingredients that might be in pull ups, but can’t seem to find a connection.
At this point I am experiencing near constant UTI symptoms, worse in the AM despite hydrating properly. I’ve been told they simply can’t keep me on the pain relief medication for UTIs (phenazopyridine based I believe?) any longer, they mentioned how it can hurt my kidneys.
What made this appointment I had with my pcp and urologist even more devastating, was that they also mentioned (gently) that occasionally surgery in such a sensitive area can cause scar tissue/nerve problems that can present in pain. They don’t know for sure that this is what is happening, however they seem to be prepping me mentally in case it is.
TLDR Version:
I have near constant UTI symptoms, worse in the morning despite proper hydration. I also have a wonderful care team that is doing their best, and upcoming appointments with them over the next three months. However, I must stop the UTI/bladder pain relief (non opioid) for the sake of my kidneys.
The Request for Your Opinion:
I would love some insight into how others have coped with this pain, my mental health team has suggested “mindfulness” which I already practiced but in my experience can only go so far. At this point I am struggling pretty badly. The recovery has been a ton of work and the pain (while not excruciating) has worn me down as it is pretty constant. So any advice, or even personal experiences would be appreciated!
I don’t want anyone to have experienced this, but if you have I think it would be much easier on me mentally to know that someone understands how this feels. I have a partner who is wonderfully supportive and he is terribly sad that I am so uncomfortable all the time. I feel isolated despite his support, as he has lived an extremely healthy/pain-free life and cannot begin to understand how I feel. (He actively tries to. It’s just he is a lucky guy who can count the number of times he has been sick on two hands.)
Thank you for reading this novel, I hope that it finds you well and happy in this new year!
