Urinary tract infections (UTIs) are typically caused by an infection in the urinary system, but people with endometriosis might be more prone to experiencing bladder pain that feels like a UTI. One condition that causes bladder pain similar to that of a UTI is interstitial cystitis (IC), also called bladder pain syndrome (BPS). Numerous research studies have found that IC/BPS is more common in people with endometriosis.

“I thought I had a UTI because I had pelvic pain and was peeing frequently and getting up twice every night,” shared one MyEndometriosisTeam member. “But it turns out I have interstitial cystitis.”

Additionally, urinary tract endometriosis, or bladder endometriosis, is a rare condition that causes symptoms similar to those of a UTI. This article breaks down the differences between these conditions and discusses the causes, risk factors, symptoms, and treatment options.

Bladder Pain in Endometriosis

Bladder pain can be caused by several factors, and some symptoms may indicate a more serious condition. Speak with your doctor right away if you notice changes in your urination or any of the symptoms discussed below, especially if you have a diagnosis of endometriosis.

Bladder Pain From Interstitial Cystitis/Bladder Pain Syndrome

IC/BPS causes inflammation of the bladder. People commonly report having pelvic pain and the urgency to urinate frequently during the day (polyuria) and at night (nocturia). The symptoms may resemble those of a UTI, but IC/BPS is not caused by an infection in the urinary tract.

“My symptoms started out as painful burning urination, and UTI symptoms, but I didn’t have a positive UTI test,” wrote one MyEndometriosisTeam member. “I worked together with my gynecologist and an endocrinologist who later diagnosed me with interstitial cystitis.”

It is not rare for people with endometriosis to also be diagnosed with IC/BPS. In fact, a 2018 study published in Neurology and Urodynamics reported that women living with endometriosis were at a nearly four times greater risk of developing IC/BPS within the first three years of their diagnosis, compared with women who didn’t have endometriosis.

Bladder Pain From Urinary Tract Endometriosis

Urinary tract endometriosis, or bladder endometriosis, occurs in just 1 percent of people with endometriosis. It can affect the bladder’s outer surface or infiltrate its wall, which indicates a form of deep infiltrating endometriosis. Symptoms vary depending on the individual’s menstrual cycle.

People with urinary tract endometriosis often experience pain or difficulty urinating (dysuria), blood in the urine (hematuria), frequent urination, and UTIs. However, about 50 percent of people do not experience symptoms early on, making this condition very difficult to diagnose.

What Causes Bladder Pain in Endometriosis?

Researchers have a few theories regarding the cause of bladder pain in those living with endometriosis.

Potential Causes of Interstitial Cystitis/Bladder Pain Syndrome

Medical researchers are not certain what causes IC/BPS but believe that dysfunction of the protective layer of cells in the urinary tract may play a role. When the layer is affected, bacteria and other organisms can easily enter the urinary tract, leading to pain and inflammation. However, more studies need to be done to increase the understanding of these ideas.

Possible Sources of Urinary Tract Endometriosis Pain

In urinary tract endometriosis, endometrial-like tissue spreads to the bladder and cannot “shed” as it typically would during menstruation. The buildup of tissue can then cause inflammation and pain and lead to other complications, such as infertility.

Endometrial lesions (or nodules) on the bladder can cause pain or spasms as the bladder fills or empties. Urinary tract endometriosis can also affect the kidneys, urethra, or ureter — a tube that connects the kidney to the bladder and runs down the side of the pelvis — sometimes causing significant bladder and pelvic pain.

Risk Factors for Bladder Pain in Endometriosis

Risk factors for developing bladder pain in people with endometriosis include:

• Tobacco use
• Family history of IC/BPS or urinary tract endometriosis
• High alcohol consumption
• Poor diet
• High body mass index (BMI)

Treatment Options for Bladder Pain in Endometriosis

Work with your gynecologist and other health care providers to find ways to properly manage both endometriosis and bladder pain. Although there is no cure for IC/BPS or urinary tract endometriosis, various strategies can help control your symptoms over time.

Medications

Some people with IC/BPS may take oral medications or undergo a bladder instillation — the process of delivering medications to the bladder through a catheter. Medications used to help symptoms of IC/BPS include:

• Nonsteroidal anti-inflammatory drugs (NSAIDs)
• Tricyclic antidepressants
• Antihistamines
• Pentosan polysulfate sodium (Elmiron)
• Dimethylsulfoxide (DMSO, sold as Rimso-50)

“Since my interstitial cystitis diagnosis, I have been going for weekly medication instillations through a catheter. It’s been about nine weeks now, and my bladder pain has subsided and does not last more than a week,” said one member.

If you are diagnosed with urinary tract endometriosis, you can treat symptoms with the following medications:

• NSAIDs
• DMSO
• Antidepressants
• Oral contraceptive pills
• Hormonal treatments (progestogens, GnRH analogs, or testosterone)

Note that UTIs related to endometriosis are resistant to most common antibiotics, and symptoms will typically return after a course of these drugs. This is also a key sign for your medical provider that you may have bladder endometriosis.

Surgery

Surgery is not commonly done to treat IC/BPS, but it is a more effective and common approach for bladder endometriosis. Laparoscopy is a procedure that can diagnose and treat endometriosis, including endometriosis of the urinary tract or the bladder. Talk with your doctor or gynecology provider to find out if surgery is the best option to treat your bladder pain symptoms.

Lifestyle Changes

Some people with IC/BPS or urinary tract endometriosis can relieve their symptoms with the following lifestyle changes:

• Doing exercises that strengthen the pelvic area
• Avoiding foods that irritate the bladder, such as citrus, caffeine, carbonated drinks, and foods with high vitamin C concentrations
• Training the bladder by setting times and intervals to urinate
• Wearing loose-fitting clothes
• Reducing stress levels
• Quitting smoking

Talk With Others Who Understand

MyEndometriosisTeam is the social network for people with endometriosis and their loved ones. On MyEndometriosisTeam, more than 127,000 members come together to ask questions, give advice, and share their stories with others who understand life with endometriosis.

Do you have endometriosis and bladder pain? Have you found helpful ways to manage your symptoms? Share your experience in the comments below, or start a conversation by posting on your Activities page.