Bladder Symptoms and Query Endometriosis

Hi all,

I found this forum today and did some digging around but didn't find too much information about bladder endometriosis. I am a 24 year old female. In July of 2024, I had my IUD removed and by September, I got an onset of severe urinary symptoms: frequency, urgency, hesitancy, incontinence (voiding every 15–20 minutes at worst). I also had two episodes of urinary retention, one requiring catheterization. Along with this came persistent low back pain and cyclic low-grade fevers (37–38 °C). My doctor kept ordering urine cultures, but they were all negative. I was trialed on a few different antibiotics with no relief, but then doxycycline and tetracycline were trialed due to possible pelvic inflammatory disease (PID). With these strong antibiotics I developed severe chest/esophageal burning with pain on eating/swallowing and couldn't tolerate oral intake. I kept going to the hospital and they kept sending me home. Finally I was admitted with esophageal pain, fevers, dehydration, and poor oral intake. During my admission, my pelvic exam, pelvic ultrasound, lumbar MRI, and angiography all normal. Labs were largely normal except elevated CRP. After this, I finally got the urology referral I was asking for. I got in for an urgent cystoscopy, showing inflammation and a posterior external bladder mass was noted? My doctor's had no explanation for this. Urinary symptoms partially improved with bladder-directed therapy but i'm still struggling. Still have ongoing intermittent fevers, chronic low back pain, severe chronic constipation and terrible night sweats. I have always had pain with intercourse. Since the hospital, I've also had a negative SI joint MRI. I recently got treated for iron deficiency by IV as my iron was severely low, but I haven't had a period in a long time as I am on progesterone therapy. I asked my gynecologist for a referral to a doctor in Hamilton that does a specialized ultrasound for endometriosis, as it is now being utilized more and less invasive, and she did not want to.

I feel like I'm at a crossroads. My quality of life is going down, I'm busy with school and work and it's so difficult to do with dealing with all of this. Does anyone have any suggestions?

Thank you in advance,

Lindsey