Bladder Problems in Endometriosis

Endometriosis is a medical condition where tissue similar to the endometrium (uterine lining) grows outside the uterus, like on the fallopian tubes or ovaries. The condition affects millions of women around the world. Its main symptoms are pelvic pain, painful periods and pain during sex.

There are two conditions that can cause you to experience bladder problems in endometriosis. You may have bladder endometriosis, or you may suffer from painful bladder syndrome (interstitial cystitis).

In rare cases, implants (the tissue that grows outside the uterus) can grow in the bladder or on its surface. This is called bladder endometriosis. 

Research estimates that only 1% of women with endometriosis will have implants that affect their urinary system, an umbrella condition called urinary tract endometriosis (UTE).

The other parts of the urinary tract that can be affected are the ureters, occurring in 9% to 23% of UTE cases. Bladder endometriosis can be severely painful and uncomfortable. 

Your doctor may suspect that you have bladder endometriosis if you have been diagnosed with endometriosis and continually have bladder or urinary tract problems that so far have not been treated successfully with regular treatments.

Some symptoms you may experience include:

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

These symptoms may get worse when you’re menstruating.

You may also experience symptoms of endometriosis when implants grow in other places. This includes diarrhea, nausea, pain during sex, fatigue, heavy and painful periods, and infertility.

Conversely, you may have bladder endometriosis and not experience any symptoms at all. Sometimes it is simply discovered during a medical test for another purpose.

It is possible to have bladder endometriosis without having endometrial implants in other parts of your body like your ovaries, but it is extremely rare. In 90% of cases, women with bladder endometriosis have ovarian implants, superficial peritoneal implants, and adhesions.

There are different ways that bladder endometriosis is diagnosed.

• Physical examination: Your doctor will examine your vagina and bladder for any endometrial growths (implants).
• Ultrasound: Your doctor may use an ultrasound to see your bladder and find out how much the implants there are if any.
• MRI: An MRI may be used to obtain images of your bladder and pelvis. This way your doctor can check for the growth of endometrial lining.
• Cystoscopy: Your doctor may insert a cystoscope into your urethra to check your bladder for implants.

The course of treatment your doctor recommends depends on the severity of your bladder endometriosis and what other treatments have been used, if any.

Hormonal treatments

Medication like progestin/progesterone, oral contraceptives, and gonadotropin-releasing hormone (GnRH) agonists may be prescribed to reduce the growth of implants in/on the bladder. Hormonal treatments may reduce the symptoms of bladder endometriosis, but their effect can be temporary.

Surgery

Your doctor may recommend you undergo surgery to treat your bladder endometriosis. Ideally, this recommendation should only come after the position of the implants has been ascertained, and that you indeed have bladder endometriosis and not some other condition that causes lesions/growths in the bladder.

During surgery, all the implants (or as much of them as possible) will be removed. The different surgical options for treating bladder endometriosis include:

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

There exists another situation where women who have endometriosis, but not bladder endometriosis, may experience bladder problems. This is called painful bladder syndrome, otherwise known as interstitial cystitis.

Painful bladder syndrome is a chronic condition where there is constant pelvic pain as well as pressure, and discomfort felt in the bladder. To be diagnosed with painful bladder syndrome, these symptoms must be accompanied by at least one other urinary tract symptom (like frequent or urgent urination,) that is not caused by an infection or any other apparent reason.

Painful bladder syndrome is known as endometriosis "evil twin" because their symptoms are very similar. Although it is very possible to have one without the other, many women who have endometriosis also have painful bladder syndrome. In fact, according to peer-reviewed studies, 60% to 66% (possibly even more) of women with endometriosis have painful bladder syndrome.

Like endometriosis the cause of painful bladder syndrome is unknown.

To formally diagnose you with painful bladder syndrome, your doctor will ask about your medical history and perform a physical examination. They may order the following tests:

• Cystoscopy
• Potassium sensitivity test
• Urinalysis (This test may be used to rule out other conditions like UTIs that may be causing those symptoms.) 

In some cases, painful bladder syndrome is diagnosed when a patient has been surgically treated for endometriosis but does not experience significant pelvic pain relief, or pelvic pain recurred suspiciously quickly.

Painful bladder syndrome is treated in many ways.

• Lifestyle changes such as cutting down on alcohol and caffeine intake, quitting smoking, reducing stress, and engaging in more physical activity.
• Bladder training: This is to help your bladder hold more urine before you have to go.
• Physical therapy: It is recommended this is done with a therapist with experience, or who specializes, in pelvic floor problems.
• Over-the-counter pain medication to help alleviate your pelvic and bladder pain
• Prescription medications like Pentosan polysulfate (Elmiron), antihistamines, and tricyclic antidepressants like amitriptyline.
• Surgery: This is usually a last resort treatment. Surgery can be performed to expand the bladder, remove the bladder, or divert the flow of urine.

Regardless of the cause of your bladder pain—be it bladder endometriosis or painful bladder syndrome—you should know that it can be treated. Make sure you explore your options extensively with your doctor. Finally, if you’re trying to conceive or plan to have kids later in life, you should make sure to communicate this to your doctor as some of the treatments for bladder pain can affect your fertility.