Endometriosis Bladder Symptoms: Urgency, Burning and "UTIs" That Never Show Up on Tests

How common is bladder involvement?

Urinary tract endometriosis is estimated to affect roughly 1 to 2 percent of women with endometriosis, and the bladder is by far the most common site, followed by the ureters. Superficial lesions on the peritoneum over the bladder are more frequent than deep nodules in the wall and cause similar irritative symptoms. Because women with these symptoms are usually seen first by urology or primary care, where endometriosis is not the first thought, bladder endometriosis is often diagnosed late.

The symptoms

• Urgency and frequency: a constant or recurring need to urinate, including waking several times at night (nocturia).
• Burning or pain with urination (dysuria), especially around your period.
• Pressure or aching above the pubic bone that worsens as the bladder fills.
• A sensation of incomplete emptying.
• Blood in the urine that appears only around menstruation (cyclical hematuria), which is a strong clue to a deep bladder nodule.
• Repeated "UTI" episodes in which urine cultures show no infection, or antibiotics do not help.

Why it gets mistaken for infection

The symptoms of bladder endometriosis overlap almost completely with cystitis. The difference is in the pattern and the tests: infection is random, bladder endometriosis is cyclical; infection shows bacteria on culture, bladder endometriosis does not. Women are frequently prescribed repeated antibiotic courses on the basis of symptoms alone. If you have had three or more "UTIs" with negative cultures, or symptoms that reliably return with your period, endometriosis should be on the list.

Bladder endometriosis is also mistaken for interstitial cystitis (bladder pain syndrome), and the two can coexist. Interstitial cystitis is itself more common in women with endometriosis, which is why both deserve consideration when urinary pain persists.

When the ureters are involved

Endometriosis around the ureters, the tubes carrying urine from the kidneys to the bladder, is less common but more dangerous, because it can narrow a ureter silently and damage the kidney over time without causing urinary symptoms. It is usually found alongside deep disease behind the uterus. This is one reason deep endometriosis should be imaged and treated by a team that routinely assesses the urinary tract.

How it is diagnosed

The history does most of the work: cyclical urinary symptoms with negative cultures in a woman with painful periods or pelvic pain. A urine test excludes infection. Transvaginal ultrasound with the bladder partly filled can show a nodule in the bladder wall; MRI maps deeper disease and the ureters. Cystoscopy, looking inside the bladder with a camera, may show a bluish nodule or be normal when the disease is on the outside of the bladder. Negative cystoscopy does not exclude bladder endometriosis.

Treatment

• Hormonal therapy (progestins, combined contraceptives, GnRH analogues) often relieves irritative symptoms by suppressing the cycle, but does not remove nodules.
• Surgical excision of superficial lesions over the bladder, or partial-thickness or full-thickness removal of a bladder-wall nodule with repair, is the definitive treatment for deep disease and is highly effective in experienced hands.
• Ureteral involvement requires surgery to free or, when narrowed, reconstruct the ureter, with kidney function monitored before and after.
• Pelvic floor physical therapy and bladder retraining help with the hypersensitivity that develops after years of symptoms.

Questions to raise with your clinician

• My urine cultures are negative but my symptoms keep returning with my period. Could this be endometriosis?
• Can the ultrasound include the bladder wall and the ureters?
• Has the kidney on each side been checked if deep endometriosis is present?
• Who performs bladder endometriosis surgery in this practice, and do they work with urology?