Endometriosis of the Kidneys: What You Need to Know About the Rare Condition

Can endometriosis affect the kidneys?

Endometriosis occurs when tissue similar to the lining of the uterus grows outside of the uterus, causing minimal to extensive fibrosis, or scar tissue. The disease often adversely affects the functions of the reproductive organs, bowels, and bladder. It can also involve the kidneys. The primary involvement of the kidneys is very rare—kidney endometriosis is often secondary due to a condition called hydroureter, or blockage of the ureters (see illustration), which are the connecting tubal structures between the kidney and the bladder.

How common is endometriosis of the kidneys?

Endometriosis of the kidneys is extremely rare, and there are only a few reported cases, although that could soon change due to increased endometriosis awareness. The condition reportedly accounts for less than 1 percent of urinary tract endometriosis, which mostly affects the bladder and only accounts for 1.2 percent of all endometriosis cases [1].

Why does endometriosis affect the kidneys?

The exact cause of endometriosis is not known, and it is even less clear why the condition can affect the kidneys.

Endometrial lesions thicken and shed in response to the ebb and flow of sex hormones during a menstrual cycle. It is thought that this sometimes leads to the formation of endometrioma or endometrial cysts in the kidneys [2]. However, the exact cause of this is not known. Some researchers think that an overactive immune response may play a role in endometrial lesions infiltrating the kidneys[3].

With each menstrual cycle, more and more endometrial cysts can accumulate in the kidneys. These cysts may invade the renal capsule, or the fibrous layer surrounding the kidneys, and cause pain. The blood clots may sometime block the ureter, or the tube connecting the kidneys and the bladder and lead to renal colic, a type of kidney pain.

As the condition progresses, the endometrial cysts may even distort the shape of the kidneys and interfere with their normal function.

How can I tell whether or not I have endometriosis of the kidneys?

Kidney endometriosis can be asymptomatic for several years and be discovered by chance while a patient is being tested for other conditions [1].

If a woman who has undergone surgery to treat endometriosis has ongoing urinary problems, it may suggest the presence of urinary tract or kidney endometriosis.

What symptoms could signal kidney endometriosis?

The following symptoms may suggest that a woman may have kidney endometriosis:

  • Pain in the lower back that co-occurs with a monthly menstrual cycle. That pain can also extend down through the legs.
  • Blood in urine that, again, that co-occurs with the menstrual cycle.
  • Difficulty urinating.
  • Recurrent urinary tract infections.

Endometriosis of the kidneys is relatively unknown among physicians, and, as a result, patients are often misdiagnosed with kidney cancer. This can lead to delayed treatment, or the patient being wrongly treated.

How can kidney endometriosis be diagnosed?

A specialist should carefully review the patient’s medical history, and follow that review with a pelvic examination.

Tell-tale kidney endometriosis symptoms include lower back pain and blood in the urine that comes and goes with the menstrual cycle.

if the patient’s symptoms disappear with hormonal treatment, such as birth control, this can also signal kidney endometriosis.

Imaging tests such as magnetic resonance imaging (MRI) scans or contrast-enhanced computed tomography (CECT) can also help visualize endometrial lesions in and around the kidneys [1].

However, the way to definitively diagnose kidney endometriosis is via histopathologic examination or the examination of kidney tissue that is obtained using a biopsy but this approach is very invasive and can lead to complications [4].

Kidney endometriosis can lead to kidney damage and even kidney failure if left untreated.

GnRH agonists and oral contraceptives may be used to manage the symptoms of kidney endometriosis, just like any other kind of endometriosis. However, the best approach is to treat the condition by removing endometrial lesions with minimally invasive laparoscopic surgery. This should be performed by a team of surgeons specializing in gynecological, adrenal, and urological laparoscopic surgery as this kind of surgery has a high risk of complications and can lead to damage to the bowel, bladder, ureter, and the organs’ corresponding blood vessels [1]. 

Endometriosis Killed My Kidney, Says Patient

Although endometriosis typically infiltrates the reproductive organs, bowels, and bladder, the disease has other horrifying manifestations. Albeit rare, endometriosis can silently kill function in one or both kidneys. This is called ureteral endometriosis, or endometriosis involving the ureters, the conduits that link the kidneys and the bladder. If endo wraps around one or both ureters, it can cause swelling in the kidney and, left untreated, kidney loss. 

Elina Kharnak is one of the unlucky few; in April, she learned her frightening kidney endo diagnosis when it was too late.

Born and raised in Kiev, Ukraine, and moving to Brooklyn, N.Y. when she was 10, Kharnak endured painful periods from the day her menstrual cycle began at age 13.

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