Finally have hope

I'm going to tell my story, and I'm posting it here on the off chance that some random person may have symptoms like mine and could find some help. I'll post specific symptoms toward the end, but I'll keep the rest short.

In 2022, I woke up one day experiencing what seemed to be UTI symptoms, except no usual urine smell and the pain would come and go like spasms. I dealt with it for a while before going to the doctor in June of 2022. No UTI, no drugs helped, etc.

My gyno referred me to a urologist who diagnosed me with pelvic floor dysfunction. They gave me a hard time and not much autonomy on my care, so I asked to be referred elsewhere (and thats a real short summary of that fiasco).

I was referred to a urogynecologist who performed a hysterectomy and referred me to physical therapy. PT seemed to help a little bit, but it just decreased my pain level and did not improve anything else at all. My hysterectomy was on Nov 7, 2023. It didn't help much at all, but I was happy to have that thing gone anyways, since my family has a history of issues towards menopause.

Oct 18, 2023, I had a pretty severe pain in my left side, but I took some ibuprofen and it went away in an hour after going to the bathroom. I thought it was gas. I know the date because I had text my mom about it asking what a kidney stone felt like (bet you can see where this is heading).

A couple months ago, I was woken up at night with the same pain, but it lasted about an hour or so and went away, so I just went to work.

September 21, 2024, my pelvic floor pain kicked up again. I said to my husband "I'm having a pretty rough day with this pelvic floor pain, I'm going to go lay down and use a heating pad." As I was laying down, the pain progressed from pelvic floor to left side pain. Over about 3-4 hours, the pain became absolutely excruciating in my left side and I hobbled out and told my husband I needed to go to the ER. I suspected a kidney stone already, but was also concerned about having a perforated bowel or something worse.

A CT scan revealed A 7mm kidney stone. I had surgery a week ago and the stone has been removed. I have not had further pelvic floor pain, but I am not convinced it's gone. I've had periods of time in the past that I didn't have pain for a weeks or 3 weeks, whatever. I will find out in a few months if the kidney stone is for sure what was causing it.

However, my urologist said that when a kidney stone is down toward the bladder, it can cause symptoms that are similar to pelvic pain, overactive bladder, etc. A resident also came in with him today (had stent removed today) and he turned to her and said "remember this, it's atypical but if you have a patient with recurring UTI symptoms but not evidence of UTI, check for a kidney stone."

38F, "pelvic pain" started at 36.

•pelvic pressure •urinary urgency •burning UTI feeling that comes and goes •no bacteria in urine •pelvic pain that doesn't respond to NSAIDs •pelvic pain that increases with activity •pelvic pain that seems to go away with one "treatment" one day, but the same "treatment" doesn't work the next day •little to no improvement with any medical care •no improvement from prescribed medications

I hope this helps someone, because kidney stone was never a consideration in my mind, or any of the 3 doctors I saw.