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

Endometriosis of the kidneys

OVERVIEW

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].

CAUSES

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.

SYMPTOMS

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.

DIAGNOSIS

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].

TREATMENT

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]. 

PATIENT STORY

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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References

  1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5761639/
  2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4337457/
  3. https://www.nature.com/articles/nrurol.2017.58
  4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4337457/#i0020-8868-100-2-376-b10

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    I underwent surgery with Dr. Seckin in 2017 and have felt like a new woman ever since. If you have, or suspect you have endometriosis, Dr. Seckin and his compassionate team of surgeons and staff are a must-see.

  • Angela Aro

    I have struggled with endometriosis and adenomyosis since first starting my period at 13. I was diagnosed at 21 and what followed was a series of unsuccessful surgeries and treatments. My case was very aggressive and involved my urinary tract system and my intestines. After exhausting all of my local doctors I was lucky enough to find Dr. Seckin. We…

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    Like so many women who have tirelessly sought a correct diagnosis and proper, thorough medical treatment for endometriosis, I found myself 26 years into this unwanted journey without clear answers or help from four previous gynecological doctors and two emergency laparoscopic surgeries. I desperately wanted to avoid the ER again; a CT scan for appendicitis also revealed a likely endometrioma…

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    Dr. Seckin literally gave my wife her life back. I am eternally grateful to him for his generous, determined spirit to see that Melanie finally live free from the prison bonds of Endometriosis.

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    I am so grateful to Dr Seckin and Dr. Goldstein. My experience was nothing short of amazing. I was misdiagnosed with the location of my fibroids and have had a history of endometriosis. Dr. Seckin was the one who accurately diagnosed me. Dr Seckin and Dr. Goldstein really care about their patients and it shows. They listened to my concerns,…

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    When I think of Dr. Seckin these are the words that come to mind. Gratitude, grateful, life-changing, a heart of gold. I feel compelled to give you a bit of background so you can understand the significance of this surgery for me. I am passionate about Endometriosis because it has affected me most of my life and I have a…

  • Jaclyn Harte

    Dr. Seckin and Dr. Goldstein radically changed my quality of life. They treat their patients with dignity & respect that I've personally never seen in the literally 25+ doctors I've seen for endometriosis. This summer, I had a surgery with Dr. Seckin & Goldstein. It was my first with them, but my 5th endo surgery. I couldn't believe the difference,…

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    I was in pain for 2 years. I was getting no answers, and because dr Goldstein and dr seckins were willing to see and treat me I'm finally feeling almost back to normal. They were very down to earth and helpful in my time of need. Dr Goldstein was easy to talk to and caring, she took care of me…

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    Dr. Seckin is one of the best endometriosis surgeon. Every time I go to the office, he really listens to me and is always concerned about my issues. Dr Seckin's office staff are a delight and they always work with me. I feel I can leave everything to them and they will take care of it. Thank you to the…

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    Fast forward 5 years to find out incidentally I had a failing kidney. My left kidney was only functioning at 18%. During this time, I was preparing all my documents to send to Dr. Seckin to review. However, with this new information I put everything on hold and went to a urologist. After a few months, no one could figure…

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    I'll never stop praising Dr. Seckin and his team. He literally gave me back my life.

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    I had a wonderful experience working with Dr. Seckin and his team before, during and after my surgery. I came to Dr. Seckin having already had laparoscopic surgery for endometriosis 5 years prior, with a different surgeon. My symptoms and pain had returned, making my life truly challenging and my menstrual cycle unbearable. Dr. Seckin was quick to validate my…

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    I came to Dr. Seckin after years of dealing with endometriosis and doctors who didn't fully understand the disease. He quickly ascertained what needed to be done, laid out the options along with his recommendation and gave me the time to make the right decision for me. My surgery went without a hitch and I'm healing very well. He and…