Can Endo Cause Urinary Issues? Part II

Unfortunately, the impacts of endometriosis are not restricted to the reproductive system or the menstrual cycle. Since endometriosis can grow in just about anyplace in the body (but is known to concentrate in the pelvic cavity), it can also affect the internal organs it grows on or infiltrates into, causing complications.

Endometriosis & interstitial cystitis

As I noted in a previous post, endometriosis intersects significantly with interstitial cystitis (IC), a pain disorder of the bladder. However, endo can also explicitly grow on the bladder or, in more rare instances, the ureters (the tubes that transfer urine from the kidney to the bladder) and the kidneys. In these cases, they can cause urinary issues and even impact overall kidney function.

What is urinary tract endometriosis?

When I had my first and only lap over 15 years ago, one of the few pieces of endo the surgeon noted in the medical report that he did not remove was some that was overriding my left ureter. I didn’t think much of this detail at the time. But all of these years later, as I have suffered more urinary pain and distress, I decided to do more research into the implication of urinary tract endometriosis (UTE) and more specifically, that affecting the ureters.

Here’s what I found: UTE is a form of deeply infiltrating endometriosis (DIE) that is relatively rare, affecting only an estimated 0.3 - 12% of women with endometriosis. DIE is a more severe form of endometriosis that invades other pelvic organs outside of the reproductive system- usually including the urinary tract and gastrointestinal tract (in other words, the bladder and bowels)- but also the liver or appendix.¹

What the research says

Of those who have UTE, bladder endometriosis is the most common (at 85%), while ureteral endo is somewhat rare (at 9%). Strangely, my lap revealed no endo on my bladder, just my ureter. Bladder endometriosis is usually abetted by symptoms such as frequency, urgency, and blood in the urine. However, as a study published in 2016 that reviewed surgical treatment and fertility outcomes of deep infiltrating endometriosis affecting the urinary tract of 53 women between 2004 and 2013, ureteral endo often has “no symptoms, which might lead to silent loss of renal function".²This means that the kidney on the side the ureter serves that has endo on it could lose function over time.

Managing and monitoring UTE

Again, it is fortunate that ureteral endo is rare. But for those of us who do have severe, deeply infiltrating endo on the urinary tract and particularly on the ureters (such as myself), they may want to speak with their doctors about having annual monitoring, such as imaging and urinalysis to gauge kidney function and determine if there is any obstruction. One peer review paper suggests, “Surveillance for obstructive uropathy with periodic noninvasive monitoring of kidney function is currently recommended for all patients with endometriosis".³ The good news is this same study asserts that for those who need treatment for ureteral and/or general urinary tract endo to preserve kidney function, hormonal treatments and surgery are usually effective.

If you are considering surgery to treat urinary tract endo, make sure to find a surgeon who is an endo excision specialist who focuses on those with advanced, deeply infiltrating endo and has a high success rate.