Feeling Defeated - Flank pain/frequent urination for 8 years. Anybody else have something similar?
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I feel completely defeated. I am so exhausted and beyond done all the things that I have been through for the last 8 years. I want to hear you guys experiences, and if you all have experienced similar things to what I am dealing with.
I am just going to tell the full story from the beginning. I am a 23F. I have been diagnosed with a autoimmune connective tissue disease, but so far as I am aware and have been told by the rheumatologist, it should not cause bladder symptoms I am experiencing. When I was 15, I started noticing that I had to pee a lot more frequently. I was urinating up to 30 times a day. After several months of this, my bladder began to develop a decreased sensation, and my upper back/flank area underneath my ribs started hurting whenever I had to pee. The flank pain is relieved immediately after urinating. I can only feel my bladder sometimes, but most times I have little to no sensation in it. The way I know that I have to urinate is due to the flank pain. Everytime they test the urine, its always negative for an infection.
The flank pain is ONLY present when my bladder has urine in it, and it is relieved the moment I empty my bladder. The pain can get very excruciating if I do not pee right away (within 5-10 minutes). If I ignore the pain past 10 minutes, I get extremely nauseous and sick feeling. If I hold it for long periods of time (>30-40 minutes), I will be in so much pain and nausea that I cannot walk or function, and if I wait that long I will be in pain and having nausea even after my bladder is empty.
It doesn't happen often, but there are also times where I've had retention/been unable to pee for a couple of days. It has always been self resolving, but when that happens I am confined to my bed because the nausea and flank pain is so severe I cannot move.
This affects literally every facet of my life. I am unable to go out and do things because I am held captive to a bathroom. I have severe anxiety surrounding if there will be a bathroom when I go out somewhere. Because of the kind of job that I have, it is not always possible for me to go to the restroom in a timely manner due to how busy I am during the day. I sleep with a pee bucket next to my bed, and I have one in my car. I am so miserable, it is such a miserable way to live and I am so tired of it.
It took me a long time to see a doctor over this issue, but I finally saw one last year. She did a renal ultrasound (I had 2 renal ultrasounds done) and they both were normal. She wanted to do a urodynamics test and a vesicoureteral reflux test (VCUG), but it was too expensive for me to proceed. At this point however, I may need to just break down and do the tests, despite the costs, because I cannot live another day like this. I've tried medications that she prescribed. One of them (sanctura) put me into urinary retention, so it was discontinued. The other (mirabegron) worked great for the frequency, but not for the flank pain. I was feeling a lot better on it though, but unfortunately my insurance stopped paying for it and its expensive.
Anybody experienced similar things?? I should mention that I do not have any pelvic or urethral pain or burning. The pain is ONLY in my flanks.
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