Can Endo Cause Urinary Issues? Part I

Even though I have had painful periods since I was 11, and IBS since I was 19, I did not experience any real issues with my bladder until I was in my late twenties. Suddenly, only a few months before I entered graduate school, I started experiencing daily urgency, frequency, and pain upon urinating. I even experienced intermittent incontinence, when laughing, sneezing, or sometimes, just getting up or making any sudden movement. I was disheartened by this new development, which also occurred around the same time I started experiencing heavy mid-cycle bleeding (and so I wondered if the two could be connected).

Getting a diagnosis

A visit to the gynecologist, who examined me via a hysteroscopic ultrasound, revealed I had over a half-dozen polyps in my uterus- which he thought could be responsible for my bleeding and a potential contributing factor to my urinary issues, since the polyps might be putting pressure on my bladder. A few months later, I had a surgery to remove the polyps. However, my urinary issues, while somewhat improved, still lingered. I was referred to a uro-gynecologist, who thought I had a weak pelvic floor and insisted I do up to 50 Kegel exercises a day. This actually made my bladder problems much worse, so much that one night, I even wet myself while sleeping, something I had never done in my entire life- even as a child.

I then decided to get a second opinion and that doctor performed a cystoscopy (when a narrow tube is put through the urethra to view the inside of the bladder and how it reacts when it is filled with liquid). The good news was that I had no visual signs of endo inside my bladder. The bad news was that my bladder went into spasm whenever liquid was introduced. In contrast to the first specialist, this one said my pelvic floor was too tight and needed to be relaxed and she diagnosed me with interstitial cystitis, in addition to overactive bladder.

Interstitial cystitis

Interstitial Cystitis, otherwise known as painful bladder syndrome, and abbreviated as “IC,” is a chronic condition that causes bladder pressure and pain. People with IC often need to urinate more frequently than those who do not, because holding even small amounts of liquid can cause spasm and pain. As a part of my treatment at the time of my diagnosis, I did about eight weeks of pelvic floor physical therapy alternating with eight weeks of bladder distillations (where my bladder was filled with a cocktail of lidocaine, baking soda, and other medication once a week in order to relax it and numb pain signals). I also did at-home relaxation exercises, took a muscle relaxant several nights a week, and used a special pelvic heating pad. My IC symptoms significantly improved, though they never completely went away. My IC tends to wax and wane, but has never been as bad as those months leading up to and immediately after diagnosis.

What's the connection between endo & IC?

Peer review research confirms an intersection between endo and IC. According to one study published in 2007 that surveyed 162 women who suffered from chronic pelvic pain, 123 (76%) patients were diagnosed with active endometriosis, 133 (82%) were diagnosed with interstitial cystitis, and 107 (66%) had diagnoses of both conditions.¹ Another study released that same year that reviewed other research related to both diseases concluded that: “Patients with [chronic pelvic pain] may have endometriosis, IC, or both. Because the symptoms of these diseases overlap considerably, gynecologists should focus on the bladder as a potential source of symptoms. Any patient who presents with pelvic pain or has unresolved ‘endometriosis pain’ should be evaluated for IC”.²

So, if you have endo and also suffer from urinary frequency and pain, you may want to get an evaluation to determine if you also have IC, so you can get the right treatment. If you already have IC and endo together, what treatments have worked best for you?

Read Part 2 here