Bladder Endometriosis and Painful Bladder Syndrome

There are two main causes of bladder problems in endometriosis: endometrial tissue growths in or on the bladder (bladder endometriosis) and painful bladder syndrome (interstitial cystitis).

Painful bladder syndrome is sometimes called the "evil twin" of endometriosis because the conditions share symptoms and often occur together.

This article discusses both of these causes of bladder problems in endometriosis and how they are diagnosed and treated.

What Is Bladder Endometriosis?

Bladder endometriosis is where tissue that is similar to the uterine lining (endometrium) grows outside the uterus and in the bladder or on its surface.

These growths, also known as implants, typically begin with reproductive organs like the fallopian tubes and ovaries. Non-reproductive organs like the bladder and intestine can become affected as endometriosis spreads.

It's possible to have bladder endometriosis without having endometrial tissue growth in other parts of your body, but it's rare. People with bladder endometriosis often have lesions on their ovaries and the lining of the abdomen and/or pelvis. They may also have scarring (adhesions) that can cause organs to stick together.

Symptoms of Bladder Endometriosis

The symptoms of endometriosis depend on where the tissue grows. Specific symptoms caused by bladder endometriosis include:

• Blood in the urine (hematuria)
• Frequent urination
• Painful urination (dysuria)
• Bladder pain
• Urgent urination
• Pelvic pain
• Lower back pain

Since the bladder, if affected, is typically only involved after lesions have developed in the reproductive organs, these symptoms can occur alongside classic symptoms including painful periods, pain during sex, fatigue, and infertility.

That said, bladder endometriosis does not cause any symptoms at all. Some people only learn they have it when they have a medical test for another reason (for example, because they are having trouble getting pregnant).

How Bladder Endometriosis Is Diagnosed

If you have been diagnosed with endometriosis and have bladder or urinary tract symptoms that are not getting better with treatment, your provider might want to check you for bladder endometriosis. 

Steps your provider might take to diagnose bladder endometriosis include:

• Physical examination: Your provider will look at your vagina and bladder to check for endometriosis. They may also feel your lower belly to check your uterus and ovaries.
• Ultrasound: Your provider can use this imaging test to look for signs of endometriosis on your bladder.
• Magnetic resonance imaging (MRI): An MRI can be used to take pictures of your bladder and pelvis to see if there are any lesions.
• Cystoscopy: Your provider may put a special scope with a camera into your urethra to look for endometriosis on your bladder.

How Bladder Endometriosis Is Treated

The treatment for bladder endometriosis depends on how severe it is and what your symptoms are, but can include hormone medications and/or surgery.

Hormonal Treatments

Hormone medications like progestin/progesterone, oral contraceptives, and gonadotropin-releasing hormone (GnRH) agonists can be prescribed to reduce the growth of implants in/on the bladder. 

Prescription medications such as Myfembree (relugolix, estradiol, and norethindrone acetate) can help treat pain associated with endometriosis. However, the use of Myfembree to treat endometriosis pain is limited to 24 months due to the risk of bone loss.

Surgery

If it's possible to reach your implants during surgery, your provider may recommend a procedure to treat bladder endometriosis.

The different surgical options for treating bladder endometriosis include:

• Laparoscopy
• Open-surgery (laparotomy)
• Partial cystectomy
• Transurethral resection

Since it's rare to only have endometrial lesions in or on the bladder, your surgeon will likely try to take out as many accessible lesions as they can during the surgery.

What Is Painful Bladder Syndrome?

Painful bladder syndrome is also called interstitial cystitis (IC). It’s a chronic condition that can cause bladder symptoms in people with endometriosis.

Painful bladder syndrome is known as endometriosis "evil twin" because their symptoms are very similar.

It's possible to have one condition and not the other. But according to peer-reviewed studies, 60% to 66% of people with endometriosis have painful bladder syndrome as well.

Like endometriosis, the cause of painful bladder syndrome is unknown.

Symptoms of Painful Bladder Syndrome

Painful bladder syndrome causes constant pelvic pain, pressure, and discomfort in the bladder. 

To be diagnosed with painful bladder syndrome, the bladder symptoms must be accompanied by at least one other urinary tract symptom that is not caused by an infection or another condition.

How Painful Bladder Syndrome Is Diagnosed

If you have symptoms of painful bladder syndrome, your provider will ask about your medical history and do a physical examination.

They may also do the following tests to rule out other causes of your pain:

• Cystoscopy
• Potassium sensitivity test (insertion of a solution into the bladder to see whether it causes pain)
• Urinalysis (used to rule out other conditions like urinary tract infections)
  

In some cases, painful bladder syndrome is diagnosed when surgical treatment for endometriosis does not provide pelvic pain relief or when pelvic pain comes back soon after surgery.

How Painful Bladder Syndrome Is Treated

There are a few ways to treat painful bladder syndrome. You may need to use more than one strategy to control your symptoms.

Possible treatments for painful bladder syndrome symptoms include:

• Lifestyle changes: Making some changes like reducing your alcohol and caffeine intake, quitting smoking, finding ways to manage stress, and engaging in regular physical activity may help you manage your symptoms.
• Bladder training: Adjusting your urination schedule can, over time, help your bladder hold more urine before you have the urge to go.
• Physical therapy (PT): You may need PT with someone who has experience in treating pelvic floor problems.
• Over-the-counter (OTC) pain medication: Painkillers like Tylenol (acetaminophen) or Motrin (ibuprofen) may help with some pelvic and bladder pain.
• Prescription medications: Your provider might recommend prescription medications like Pentosan polysulfate (Elmiron), antihistamines, or tricyclic antidepressants such as amitriptyline to help with your symptoms.
• Surgery: As a last resort, surgery can be done to expand the bladder, remove the bladder, or change the flow of urine.

It can take some time to find the best treatment. You'll need to talk to your provider about the pros and cons of each option in your case.

For example, if you’re trying to get pregnant or want the option of having children, you'll need to learn about how the treatments could affect your fertility.

Summary

Endometriosis that affects your bladder can cause pain and other bladder symptoms. Endometriosis can also cause interstitial cystitis (IC), also known as painful bladder syndrome. The two have similar symptoms.

You’ll need to see a provider to get diagnosed with bladder endometriosis or painful bladder syndrome. They can do tests to figure out which condition is causing your pain and offer treatments that can help you manage your symptoms.