When Endometriosis Causes Bladder Pain

I had chronic bladder pain for the first seven years of my sexually-active life. Some of my symptoms included pressure, painful urination, and always feeling like I had to pee. At first, I did have some culture-confirmed urinary tract infections, but often my bladder hurt when the culture was negative. But since my symptoms accelerated post sex, a few doctors told me to take a low-dose antibiotic beforehand because they assumed I was having chronic UTIs.

No one ever considered my endometriosis might be contributing to bladder pain. At least they never told me that theory. And since the pain wasn't usually caused by an infection, it persisted despite the pre-sex antibiotic that always gave me a yeast infection — resulting in even more pelvic pain.

Endometriosis and interstitial cystitis

A 2018 study showed that people with endometriosis often have bladder pain syndrome, also known as interstitial cystitis (IC).¹ This bladder inflammation can cause pelvic pain symptoms and bladder tenderness that can feel like a UTI.² In my case, this led to an over prescription of antibiotics that didn't treat the underlying problem.

After a couple years of complaining that the antibiotics weren't helping, my OBGYN finally sent me to a urologist. The first one told me just to pee after sex, which wasn't helpful since my pain wasn't actually from an infection. I wanted a second opinion, so I went to another urologist. After a cystoscopy — when a doctor puts a terrifyingly long camera into the urethra — it showed my entire bladder lining was red: a sign of chronic inflammation.

As far as I know, I don't have endometriosis on or in my bladder. However, an endometriosis specialist told me that endometriosis causes systematic inflammation, which can lead to the release of pro-inflammatory cytokines throughout the bloodstream. And if my pelvic organs are already inflamed from endo, sex can irritate my endometrial lesions even further. (Not to mention that the bladder is right next to the vaginal canal.)

IC can result from non-endo related issues, but gynecologists should be aware that the two often overlap.^3,4 It's important to identify the cause of the symptoms in order to treat them effectively.

Getting the right diagnosis for bladder pain

As people with endometriosis know, getting the right diagnosis is key to treating the condition. Simply knowing my bladder was inflamed and not infected helped me treat my symptoms more appropriately, and my chronic bladder pain ultimately resolved. When I stopped the vicious cycle of antibiotics that led to yeast infections, it felt like my immune system got a break. I treated the pain with urinary analgesics (like AZO, the pill that makes your pee orange) or ibuprofen instead of unhelpful antibiotics.

Most importantly, I took a break from sex when it felt like my bladder was irritated. I can't tell you exactly what relieved my chronic bladder pain, but receiving the proper diagnosis helped me on the path to a resolution.