Endometriosis is a painful, chronic condition that affects at least 1 in 10 people worldwide who are assigned female at birth. It can affect organs throughout the abdomen and pelvis, including the bladder.
The uterus is lined with tissue called the endometrium. The endometrium grows and is later shed during the menstrual cycle, or period. Sometimes, endometriumlike tissue grows outside of the uterus and forms endometriosis lesions. Just like normal endometrial tissue, endometriosis lesions can grow and bleed during menstruation in response to hormonal changes, causing pain and inflammation.
Bladder endometriosis (BE) is a type of urinary tract endometriosis (UTE) — endometriosis that affects the urethra, bladder, ureters, or kidneys. UTE is diagnosed in only about 1 percent of people with endometriosis.
UTE usually involves the bladder and, less frequently, the ureters (tubes that carry urine from the kidneys to the bladder). Endometriosis of the urethra (the tube that carries urine from the bladder out of the body) or kidneys is extremely rare. BE and other types of UTE are not a different type of endometriosis but, rather, endometriosis that affects specific organs.
Endometriosis can occur throughout the pelvis and abdomen, including on the uterus, ovaries, fallopian tubes, uterosacral ligaments, bladder, intestines, and peritoneum (the lining covering the abdominal and pelvic organs). Because endometriosis often affects more than one area or organ, BE usually occurs alongside endometriosis in other places.
BE can be one of two types of endometriosis: superficial peritoneal endometriosis or deep infiltrating endometriosis (DIE). Superficial peritoneal endometriosis affects the peritoneum. DIE is a more serious type of endometriosis that invades organ tissue. DIE of the bladder can penetrate into the muscles of the bladder.
BE can have the same symptoms as other forms of endometriosis, including lower urinary tract symptoms. Symptoms involving the urinary tract do not necessarily indicate BE, but clinical features like blockage of ureters or intense bladder pain can suggest a diagnosis of BE.
Because endometriosis lesions respond to hormonal changes during the menstrual cycle, symptoms are often cyclical. Pain and other symptoms typically worsen immediately before or during the menstrual period, but other symptoms may be constant.
Urinary tract symptoms of endometriosis can include:
Common symptoms of endometriosis include:
The cause of endometriosis is not well understood. The condition appears to be caused by a variety of factors. Endometriosis tends to run in families, so it may have a genetic component.
Endometriosis is also linked to environmental factors, such as exposure to certain chemicals. Other theories include immune system disorders, menstrual bleeding into the pelvis (retrograde menstruation), and complications of surgery.
Researchers used to think DIE of the bladder correlated with uterine surgeries, but recent research has not found a significant link between the two.
Endometriosis can be difficult to diagnose; many people spend years seeking a diagnosis for their severe pain and other symptoms. Steps to diagnosing endometriosis include a thorough medical history, physical exam (including pelvic exam), blood and other laboratory tests, imaging studies, and sometimes cystoscopy.
Finally, laparoscopic surgery to explore the pelvis and identify endometriosis lesions is the gold standard for diagnosing endometriosis.
A thorough medical history can identify potential symptoms of endometriosis, including urinary tract symptoms. A family medical history is also important. Having family members with endometriosis increases your risk of developing the disease.
A physical exam can help localize pain symptoms and identify possible locations of endometriosis lesions. A pelvic exam is very important. Painful nodules on the bladder due to DIE can frequently be felt on pelvic exam.
Laboratory tests for endometriosis include standard blood and urine tests. Additional tests may be used to look for biomarkers of endometriosis.
Imaging studies are used to help locate endometrial lesions. Ultrasound and transvaginal ultrasound can help locate lesions. CT and MRI scans are also sometimes used.
Cystoscopy is sometimes used to help identify BE lesions. Cystoscopy uses a small camera inserted through the urethra to see the inside of the bladder. DIE can cause nodules that can be seen from inside of the bladder.
The gold standard for diagnosis of endometriosis is laparoscopic surgery. This surgery involves inserting a tiny camera, light, and instruments through small cuts in the skin. This technique can help doctors see endometriosis lesions and adhesions. Adhesions are bands of scar tissue that can make organs stick together; they are a common complication of endometriosis.
Laparoscopic surgery is also used to collect biopsies of lesions for laboratory analysis. Doctors can also remove lesions and adhesions through laparoscopic surgery.
Treatment of BE includes pain management and hormonal therapy. Surgery is also an option. Hormonal therapy is usually an effective treatment option for BE, but it is not a cure.
DIE that affects how the bladder or ureters function may require surgery to treat symptoms and prevent complications like bleeding or ureter blockage.
Endometriosis pain can be debilitating. Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, can help relieve pain and other symptoms. NSAIDs work by reducing cytokines and prostaglandins, molecules produced by the body that promote inflammation. Other pain medications, including opioid painkillers, may be needed to help control severe pain.
Hormonal therapy has proved to be a very effective therapy for treating endometriosis. It can reduce the size of lesions and prevent symptoms that come and go throughout the menstrual cycle. People may need to take hormonal treatments until they reach menopause to control endometriosis-associated symptoms. Hormonal therapy for endometriosis includes hormonal birth control and other drugs.
Hormonal birth control pills that are useful for treating BE include combined hormonal contraceptives (estrogen plus progesterone) and progestin-only contraceptives.
Gonadotropin-releasing hormone (GnRH) antagonists such as elagolix (Orilissa) and GnRH agonists such as leuprorelin (Lupron) decrease estrogen production. Danazol (Danocrine) is a synthetic hormone related to testosterone that alters hormone levels and reduces endometriosis symptoms.
Some research has shown that GnRH agonists may be more effective than oral contraceptives in treating BE.
Laparoscopic surgery can both find and treat endometriosis lesions. Some superficial endometriosis lesions can be removed or ablated (burned off) during laparoscopic surgery to diagnose endometriosis.
In addition to surgery involving the bladder, hysterectomy (removal of the uterus) and oophorectomy (removal of the ovaries) may be part of a surgical treatment plan. Endometriosis lesions that are causing complications may require surgery. Depending on the type of surgery, BE may be treated by a gynecologist, a urologist, or both.
Urinary tract endometriosis lesions can block the ureters, leading to urine backing up into the kidneys. This can lead to hydronephrosis, kidney swelling that can cause permanent damage.
DIE lesions of the bladder wall may require surgery to remove a portion of the bladder wall. Removing lesions in the bladder near a ureter may require moving the ureter and reconnecting it to a different area of the bladder.
Endometriosis can dramatically affect someone’s physical and emotional quality of life, but it is treatable. BE can respond well to both medication and surgery, providing relief from symptoms. Surgery for BE may also help improve fertility in some people.
Endometriosis is a complicated and often frustrating condition, but with proper treatment, you can regain control over your disease.
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