This is a bit of a long shot, but since it's an off topic day I figured I'd ask whether anyone else deals with this and if they'd found a way to manage it.
Very long story short, I've had a number of surgeries (ureteroscopies and laparoscopies; I think the current count is 14 total) performed on my left ureter and kidney over the past 10 years due to ongoing problems with kidney stones (and having tiny ureters that do not allow them to pass). To complicate matters, I was diagnosed with endometriosis 3 years ago and have had 2 surgeries related to that (one investigated the left ureter and kidney because there was concern that the endo was affecting them).
Over the past 2 years, I've developed chronic pain in the left ureter/kidney. It took awhile to diagnose the pain...to determine where it was coming from. Pain is tough because you have no way to "show" it to doctors. But as I'm sure most of you know, horse women are pretty tough--if we show up in pain, we are REALLY in pain.
I have 2 great doctors down at Hopkins, and a great GP up in this area. Last May, I had surgery at Hopkins that pulled the nerves away from the left kidney in an attempt to relieve some of the pain. It was a real, as they called it, "Hail Mary" but I recovered well and was pretty much pain free up until early this year.
At the beginning of March I started having a lot of problems with pain again and a CT did show stones in both kidneys, and one at the top of the left ureter. They did surgery to remove the ones on the left side 3 weeks ago and placed a stent. For me, stents cause excruciating pain; I ended up pulling it myself 2 days post surgery. I've been slowly getting better but lapsed back into very bad pain this past week.
All my doctors agree that the pain is caused by hypersensitivity of the left ureter/kidney. My GP prescribed gabapentin and I'm looking into seeing a pain specialist at Hopkins. I'm finally coming to terms with the fact that this will be life-long and I need to figure out how to manage it better. Stone-wise, I do everything I'm supposed to but they still show up every once in awhile.
So, it's tough because apparently this isn't very common. I'm lucky to have doctors that believe me and understand how bad the pain is (versus thinking I'm making it up or exaggerating). It's just frustrating some days and debilitating. For those of you've who had kidney stones, it's similar pain but not quite as acute or excruciating (thank God!).
I was really depressed yesterday. I feel guilty because I know there are other people who have much worse health problems. It's just that when I'm in a bad spot I get so tired and fatigued. It seems like a very long life to look ahead to.
I don't have chronic kidney pain, but I had my first (and hopefully last!) kidney stone a few months ago. OMG!! I have never known such pain! You have my sympathy and if you have anything like that kind of pain on a chronic basis I soooo feel for you.
I pulled my stent out the night after my morning surgery. I'm with you on that too....
I've passed a total of 15 kidney stones in the past 3 years. 13 of those were while I was pregnant with my son. Thankfully, they seem to have quit, for now. But I live daily with that nagging fear of an attack, so I always keep percocets with me.
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I have multiple kidney stones too. I've passed 22 small ones (2-3 1/2mm) since October. ouch. But as long as I can pass them, I'll deal with the pain. I've had two surgeries and really don't want another. Like you, I hate, hate, hate the stents. They keep me ill and irritated the entire I have them in. I understand totally where you're coming from though...sometimes you just get tired to death of hurting all the time.
I don't think you can be on this medicine long term, but I have found Torodol, which is also an anti-inflammatory to be a major help for me. My doctor also put me on Flomax...he says this causes the ureters to relax and dialate, he also told me it made them slightly "less sensitive". I have to admit, it did help some.
I don't know how you two managed to pull your stents out...my doctor has always made sure they were not reachable by me!
One of the frustrating things for me is that I broke my back 8 years ago (compression fracture L1 & L2) and arthritis has set in. Sometimes I can't tell the difference between a kidney stone and the arthritis acting up because they both act the same...a burning ache in my lower back and a stinging type pain running down my right leg.
About a month ago at work, the chair I have to use broke and I couldn't get the spare adjusted correctly. I was ill-natured and bitchy all day. Went home and commented that my back was killing me, thinking it was the angle of the chair and the arthritis. Took my pain pills, laid down and about three hours later passed a 3.5mm stone (that's about the maximum size I can pass).
I've had some that have sent me to the ER and to my knees...others just annoy the hell out of me. I'm a vindictive person though, I would wish them on my worst enemy if I really wanted them to suffer.
You have my sympathy. I hope you find a solution to your pain and discomfort.
"It's not a mistake if you knew what you were doing was wrong."