Endometriosis is usually discussed as a pelvic condition—painful periods, pain with sex, fertility challenges. But in a small subset of people, endometriosis reaches the urinary tract and can affect the kidneys indirectly (by blocking urine flow) or, far more rarely, directly as a lesion within the kidney itself. The tricky part is that kidney-related endometriosis doesn’t always announce itself with dramatic symptoms. Sometimes it’s quiet, progressive, and discovered only after kidney function has already taken a hit.
This guide breaks down what kidney endometriosis really means, why it’s often missed, and what to do if you suspect it.
What is Kidney Endometriosis?
Kidney endometriosis is a rare condition where tissue similar to the uterine lining grows on or around your kidneys. This extra tissue bleeds during your menstrual cycle, but the blood has nowhere to exit your body. You may experience deep flank pain or notice blood in your urine specifically during your period.
Silent loss of kidney function can occur if these growths block your ureters and stop normal urine flow. We often misdiagnose this condition as kidney stones or tumors due to its unusual location. Treatment usually involves laparoscopic surgery to carefully remove the lesions and preserve the kidney.
Kidney endometriosis is extremely rare, and there are only a few reported cases. However, increased endometriosis awareness could change this. The condition reportedly accounts for less than 1% of urinary tract endometriosis, which mostly affects the bladder and only accounts for 1.2% of all endometriosis cases.
Get a Second Opinion
Our endometriosis specialists are dedicated to providing patients with expert care. Whether you have been diagnosed or are looking to find a doctor, they are ready to help.Our office is located on 872 Fifth Avenue New York, NY 10065.
You may call us at (212) 988-1444 or have your case reviewed by clicking here.
Causes of kidney endometriosis
The exact cause of endometriosis is not clear, and it is even less clear why the condition sometimes affects the kidneys.
Endometrial lesions thicken and shed in response to the ebb and flow of sex hormones during a menstrual cycle. Researchers think that this sometimes leads to the formation of endometrioma or endometrial cysts in the kidneys. However, the exact cause is not clear. Some think that an overactive immune response may play a role in endometrial lesions infiltrating the kidneys.
With each menstrual cycle, more endometrial cysts accumulate in the kidneys. These cysts may invade the renal capsule, or the fibrous layer surrounding the kidneys, and cause pain. Blood clots may block the ureter 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.
Symptoms of kidney endometriosis
Kidney endometriosis can be asymptomatic for several years. Doctors may discover it by chance while they are evaluating a patient for other conditions.
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.
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 the urine that co-occurs with the menstrual cycle
- difficulty urinating
- recurrent urinary tract infections
Diagnosis of kidney endometriosis
Most physicians are not familiar with endometriosis. As a result, they often misdiagnose patients with kidney cancer. This can lead to patients not receiving treatment on time, or receiving the wrong kind of treatment.
A specialist should carefully review the patient’s medical history, followed by 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. Another sign of kidney endometriosis is when the patient’s symptoms disappear with hormonal treatment, such as birth control.
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.
However, the way to definitively diagnose kidney endometriosis is via histopathologic examination. This is the examination of kidney tissue that is obtained using a biopsy. However, this approach is very invasive and can lead to complications.
Treatment options
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 there is a high risk of complications including damage to the bowel, bladder, ureter, and the organs’ corresponding blood vessels.
Living with Kidney Endometriosis
Living with kidney endometriosis can be challenging, as it may cause chronic pain, discomfort, and urinary issues. The condition often leads to lower back pain, blood in the urine, and pain during urination. It can also affect daily activities, particularly during menstruation when symptoms may worsen as routine endometriosis symptoms.
FAQs
Can Kidney Endometriosis Affect Kidney Function?
When we talk about kidney endometriosis, it’s pretty rare, but yeah, it can actually mess with your kidneys. Basically, if that endometrial tissue decides to grow on or around your kidneys, it can lead to some inflammation, scarring, or even hydronephrosis. And when that happens, your kidneys might not be able to do their job properly.
If it goes unchecked, we’re talking potential kidney damage or things like a blocked urinary tract. In really tough cases, surgery might be needed to surgical approach and protect your kidneys if possible.
Is kidney endometriosis dangerous?
Yes, kidney endometriosis is dangerous because it can lead to silent kidney failure without obvious symptoms. The endometrial growths can gradually block the ureters, which are the tubes carrying urine from the kidney to the bladder. This obstruction causes urine to back up and swell the kidney, a condition known as hydronephrosis.
Because this damage often happens without specific pain, you might lose significant kidney function before the problem is even discovered. It is critical to get regular ultrasounds if you have severe deep infiltrating endometriosis. Immediate surgery is often necessary to remove the blockage and save the kidney.
How is kidney endometriosis different from other types?
Kidney endometriosis is a pretty unique situation when it comes to endometriosis. Normally, when we talk about endometriosis, we’re thinking about those common spots in the pelvis, things like your ovaries, fallopian tubes, and uterus. That’s where you’d usually see symptoms like really bad pelvic pain, super heavy periods, or issues with fertility.
But kidney endometriosis? That’s a whole different ballgame because, as the name suggests, it specifically affects your kidneys or the tissue right around them. Because of where it’s located, the symptoms tend to be more about your urinary system. So, instead of pelvic pain, you might experience things like seeing blood in your urine, pain when you pee, or lower back pain.
Patient story
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 (endometriosis involving the ureters). 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 was diagnosed with kidney endometriosis when it was already too late.
Get a Second Opinion
Our endometriosis specialists are dedicated to providing patients with expert care. Whether you have been diagnosed or are looking to find a doctor, they are ready to help.Our office is located on 872 Fifth Avenue New York, NY 10065.
You may call us at (646) 960-3080 or have your case reviewed by clicking here.
Dr. Seckin is an endometriosis specialist and women’s reproductive health advocate. He has been in private practice for over 30 years at Lenox Hill Hospital with a team of highly skilled personnel.
Dr. Seckin specializes in advanced laparoscopic procedures and is recognized for his expertise in complex cases of deep infiltrating endometriosis of the pelvis. He is particularly dedicated to performing fertility-preserving surgeries on cases involving the ovaries.
He has developed patented surgical techniques, most notably the “Aqua Blue Excision” technique for a better visualization of endometriosis lesions. His surgical techniques are based on precision and microsurgery, emphasizing organ and fertility preservation, and adhesion and pain prevention.
Dr. Seckin is considered a pioneer and advocate in the field of endometriosis.