Urologist insists there’s no blockage, but the pain is killing me

I’m 37, female, and for almost three years now I’ve been dealing with constant pain in my lower left back — basically right where my kidney sits.

When it first hit, I was at work and could barely stand up. A coworker had to drive me to the ER. I told the doctor I’ve had kidney stones before, always on my right side, and this felt like that pain but cranked up. The doctor figured it sounded more like sciatica since it kicked in while I was bending and twisting at work, and said it wasn’t traveling the way kidney stone pain usually does. They loaded me up with pain meds, sent me home with a prescription, and told me to circle back with my primary care doctor.

Over the next few months, the pain kept flaring up here and there, though not quite as bad. Then it went full-blown severe again and I ended up back in the ER. They ran an X-ray and said they couldn’t see a thing. I followed up with a different doctor at my primary’s office, who ordered an MRI. It showed a little disc degeneration, but nothing major enough to explain my pain.

From there I got sent to a spine specialist. He said the pain was coming from SI joint dysfunction (the sacroiliac joint). I did physical therapy — no help. Got a steroid shot — also no help. During the months I was being seen there, a new pain popped up around my bikini line — up front near the groin, where my leg meets my hip and pelvis. It honestly felt like my leg had been half ripped off, like the ligaments had been stretched way too far and just wouldn’t snap back.

My primary care doctor ended up leaving the practice after moving away, so I had to start all over with a new one. She’s been patient with me and my mystery pain, but getting an appointment with her is really tough. Even my medication reviews, which are supposed to happen every three months, keep getting pushed back because her schedule is so booked out.

For a while, my husband and I figured my job was what was triggering the pain, since it would flare up so fast and then take days to calm down. I eventually had to quit that job — I was missing more than 60% of my scheduled shifts. Since then I’ve had a hard time finding work I can actually do without this intense pain, so I haven’t been employed for almost two years.

My current doctor ordered an X-ray to see if anything new would show up — anything that might hint at why this pain won’t quit. The report came back showing multiple stones, up to 9mm, sitting in my lower and middle poles. Then a CT scan confirmed it: two big stones (6mm and 10mm) plus a few tiny ones.

I saw the urologist yesterday. He said my CT didn’t show any obstruction, so the stones aren’t the source of my pain — but I should still get them dealt with so they don’t cause a blockage down the road. I told him I’m sick of living like this, hurting 4 or 5 days out of every week, and I just want to knock out as many possible causes as I can so I can figure out what’s actually going on.

He kept repeating that the stones aren’t causing my pain and getting rid of them won’t fix it, since they’re not blocking anything. But I know what my body feels. This pain in my back is right over my kidney, it doesn’t travel anywhere, the only thing that touches it is heat, and my urine flow gets slower whenever the pain is worse.

I’ve got ESWL scheduled for mid-June. He said he’ll give it a 1% chance of helping, just to leave me a little hope — but he still insists it won’t take the pain away.

When my scan results came back showing several stones, I was so sure dealing with them would be the answer I’d been searching for. After talking to him, I just feel crushed. He’s the only urologist in my town, and honestly, traveling somewhere for a second opinion feels pointless when he’s already willing to treat them. It’s just that after reading so many people’s stories, I really believe stones that hang out in the kidney like they’re at an endless house party can absolutely cause pain.

Has anyone else been through something like this? Did you have kidney-stone-type pain that stuck around while the stones were in your kidney — and then it finally went away once they were gone? Or did it turn out the stones weren’t the cause, and the real issue got found only after they were out? I’ve tried every kind of OTC pain reliever and prescription under the sun, and almost nothing touches it anymore. It’s like my body has gone immune to pain relief. I feel like any hope of being pain-free is just gone.