You’ve likely heard that Endometriosis can grow in all sorts of places inside the body.  Well, the bladder and urinary tract are no exception.  Endometriosis implants can grow on or inside the walls of the bladder or along the urethra.

Symptoms

Common symptoms patients may complain about with bladder Endo are frequently needing to pee, pain when the bladder is full, painful urination, and an urgent need to pee.  Some also suffer from blood in their urine when they’re on their cycles (may be hard to distinguish…given the natural course of what a period does…).  This urine-blood may not be perceptible to the naked eye and require a lab test.  And as usual, many EndoWarriors only have these symptoms during their periods; others have them 24/7. It should also be noted that many with bladder Endo don’t present any symptoms.

Some may even have Endo growths on their urethra and/or ureter, which may compress or block some or all of the urethra/ureter.  This blockage can back urine up into the kidneys, causing damage and pain.  It may also make it difficult to fully empty the bladder when peeing.

How to Diagnose?

Your physician may perform a vaginal exam and feel for nodules or to see if you suffer from any tenderness or pain to his/her touch.

A urine analysis may be ordered.  This lab work may help rule out other causes of symptoms, including bladder infections or other bacterial infections.

Transvaginal ultrasounds may be performed.  In some cases, a CT or MRI scan may help diagnosis infiltrating Endo; however, it may not always be seen in these imaging studies.  Do understand that imaging studies are not always reliable or accurate when trying to identify and locate Endometriosis.

If the Endo is actually inside the walls of your bladder, a cystoscopy may be performed.  That’s when a tiny camera is maneuvered into your bladder to visualize any implants. If any are seen, samples of your bladder tissue may be taken for biopsy.

If Endo is only on the exterior of the bladder, it might only be detected by performing abdominal surgery, whether it be laparoscopy or laparotomy.

If Endo is located on or near the ureter, your surgeon may remove the lesions from the affected areas.

How to Treat?

Many patients have had successful results treating their bladder Endo with hormonal treatments and pain killers.  If those do not work, you know the drill : surgery to remove the implants.  If the bladder wall has been infiltrated with Endo implants, a portion of the bladder wall may need to be removed.

Other Causes of Symptoms?

If you suffer from these symptoms, you may not have Endo on/in your urinary tract or bladder; however, may be suffering from some other ailment.  Interstitial cystitis mirrors the symptoms of Endo on the bladder.  And it is possible you suffer from both IC and Endo.  Cystoscopies are also important procedures to help rule out bladder cancer.

Studies and Science

A 2007 study published in the Journal of the Society of Laparoendoscopic Surgeons compared the symptoms of bladder Endometriosis with the similar symptoms of interstitial cystitis.  It also confirmed that one patient may suffer from both conditions.  It concludes that if a patient complains of persistent pelvic pain, even after surgery or medication for Endometriosis, the physician should look into testing for IC.  It may be that there are unresolved Endo implants on/in the bladder, or that the patient suffers from IC, or both.  Just one more thing to be mindful of.

A 2008 study published in the Journal of the Society of Laparoendoscopic Surgeons stated that 1% of women with Endometriosis suffer from bladder Endo.    Six women were studied.  Of those six, all received transvaginal ultrasounds and two received cystoscopies.  All underwent laparoscopic surgeries; two had to have their bladders resected (a portion of the wall removed); five of the women had Endo implants removed.  All reported relief of symptoms after surgery.

A 2010 study published in Human Reproduction followed 75 patients for five years after their Endo excision surgeries from their bladders.  All 75 women stated they did not have recurrent symptoms after surgery.  None suffered from their pre-operative symptoms.  None!

A 2012 study published in Urologia Internationalis, which reviewed literature from 1996 to 2011 regarding endometriosis on the bladder and urinary tract.  After review of the literature, it stated that 0.3% – 12% of women with Endo have bladder or urinary tract Endometriosis.  It concluded that collaborations between gynecologists and urologists are highly advisable in diagnosing and treating bladder Endo.

A study published in 2016 reviewed the records of 53 women who underwent surgery for urinary tract Endometriosis.  A stunning 72% of the women were positive for Endometriosis on their bladders!

A January 2017 article in European Urology stated that women who have bladder endometriosis need multidiscplinary care: urologists, radiologists, and gynecologists all need to work together.  

The International Surgery Journal published an article in January 2017 of ureteric obstruction.  A patient had a ureteric colic (aka a urinary tract obstruction) for the past month, which increased in severity and radiated from her left loin to groin.  Imaging studies suggested the obstruction was a calcification, or what’s known as a ureteric stone.  Surgery was performed: the hard mass was found within her left ureter, as well as adhesions to peritoneum, left fallopian tube and ovary, left iliac vein, and sigmoid colon.  The surgeons removed her fallopian tube and ovary, removed the lower portion of her left ureter, and performed what’s called a psoas hitch procedure (where the bladder is slightly moved and attached to the psoas muscle) to make up for the lack of the lower ureter.  The removed ureter mass was biopsied and confirmed to be Endometriosis.  The authors suggest that women that suffer from cyclical flank pain (during their cycle), pain while urinating, urgency to urinate, have frequent UTIs, or have an elevated levels of red blood cells in the urine should speak with their doctors.  A urologist may need to be involved, as well as CT scans, intravenous urograms, and MRIs may aid in the detection of any obstruction.  A ureteroscopy and biopsy may better confirm the suspicions.

Another January, 2017, article (published in Port J Nephrol Hypert) was of a 29-year-old woman who had complaints of infertility and painful periods.  Testing revealed she had a Stage II kidney injury and an ultrasound confirmed a blockage of both of her ureters.  An MRI didn’t reveal what caused the blockage, so a laparoscopy was performed.  She was found to have Endometriosis, causing a frozen pelvis, and Endometriosis lesions were impeding her ureters.  Surgical intervention, followed by hormonal treatment, and she hadn’t had any recurring Endometriosis symptoms at a 3-year follow-up, but she did continue to suffer from numerous UTIs and poor kidney function.  The damage was done…

A February 2017 study followed the case of a 22-year-old woman who had been complaining of frequent urinary tract infections and pain.  She had an ultrasound and two cystoscopies, and a mass was found within her bladder.  An MRI confirmed the mass was 3×4 cm and a biopsy confirmed Endometriosis.  She underwent surgery (both laparoscopic and transurethral) to remove the lesions, as well as resect a section of her bladder, as it was stuck to her uterus.  At her six-week post-op appointment, she was symptom free.

A study published March 2017 reviewed over 300 cases of ureteral Endometriosis.  Another study published in January 2017 states that ureteral endometriosis should be suspected in all cases of deep infiltrating Endometriosis.

In July 2017, a study was published about 46 women who had excess fluid in their kidneys due to a backup of urine (ranging from 2002 to 2015).  Each of them had Endometriosis on their ureters, and each received excision surgery to remove the lesions. Most were satisfied with the outcome of surgery a year later.  Interestingly, nine patients also had bowel Endometriosis, and another five had bladder Endometriosis.  The authors encourage the use of imaging studies to follow any recurrence of Endometriosis or affects on the ureter and/or renal system.

A 2018 study was of a 33-year-old woman who complained of blood in her urine, nausea, vomiting, diarrhea, and groin pain since late 2017.  Physical examination found tenderness in her left lower back and her bloodwork was normal.  She underwent CT scans and MRIs of her left kidney and her left ureter was found to be dilated, but no stones or obstructions were seen.  A ureteroscopy was performed and a “suspicious tumor formation” was found in her left ureter.  A biopsy was taken (yep: Endometriosis) and a stent was placed to aid in ureter function.  Surgery was recommended and the narrowed portion of her ureter was removed and described as “fibrotic and stiff.”  Biopsy confirmed the presence of ureteral endometriosis and the stent was removed four weeks after surgery and everything appeared normal.

A 2019 study was of a 26-year-old woman who had intermittent and recurrent lower left quadrant pain. She had been treated for tuberculosis previously, but imaging studies showed a blockage to her left kidney and they once more suspected tuberculosis ureteric stricture was the culprit. Surgery was performed to free the blockage and a biopsy was performed on the bit of removed ureter: endometriosis had developed inside of her left ureter and blocked the proper flow of waste, leading to a swollen and back-up left kidney. After surgery she was given oral medroxy progesterone and six months later, she was doing well.

A 40-year-old woman was the topic of a study published in May of 2019. She sought treatment with a urologist due to abdominal pain near her right kidney that she had had off and on over the past two years that usually occurred around her period. She had previously had a ureteroscopy in search of kidney stones, and none were found. She also previously had two c-section deliveries and a hysterectomy because of leiomyomatosis (benign growths in the uterus). Since her hysterectomy, she had not used any hormone replacement therapy. Her blood tests were normal, but a CT found that her right kidney was enlarged and due excess fluid and urine build-up (hydronephrosis and hydroureter). They also found a small mass inside her right ureter. They performed another ureteroscopy. An x-ray called a retrograde pyelogram was also done that also found the lesion inside the ureter. The mass was removed via laser resection and a stent was placed inside her ureter. The excised mass of tissue was confirmed as Endometriosis by the pathologist. A month later, the stent was removed and she was referred to her gynecologist for hormone therapy. Six months later, she had no recurrent symptoms.

A June 2019 study is a trip through time: in 2005, she was 19 years old and a virgin. She had an Endometrioma surgically removed that year. Then she underwent 3 months of GnRH analogue injections and was able to conceive and birth two children (one in 2007 and another in 2010). In 2016, she returned to her surgeon in Malaysia because she experienced menstrual cramps, pain when urinating, and she was unable to hold in her pee. Six months earlier she had been to a urologist who performed a cystoscopy and diagnosed her with bladder Endometriosis, but did nothing but prescribe her six months of GnRH analogue injections. Since her symptoms persisted, she wanted more thorough care. Her surgeon ordered an ultrasound, which showed a nodule on her bladder. A urogram showed stricture of her upper right ureter. She underwent a laparoscopic surgery, which Endometriosis lesions and adhesions were removed. A cystoscopy located the blueish nodule inside her bladder and was resected. Pathology reports confirmed the bladder Endometriosis. AND…she once again succesfully conceived five months after her excision surgery.

In October 2019, Urology Case Reports published a study of a 36-year-old woman who complained of recurrent inflammation of the bladder (aka cystitis), when none of her other doctors could find a cause as her tests were normal. She had no blood in her urine. When she peed, it hurt and burned. Her symptoms weren’t influenced by her period. She had three children, two of whom were delivered by c-section. Tests, again, were normal. An ultrasound, however, found a small mass inside her bladder. An MRI confirmed the presence of the mass. And a cystoscopy saw a bluish nodule within her bladder. It was surgically excised and during resection a “dark chocolate-like content” oozed out of the lesion. Pathology diagnosed it as a bladder endometrioma. Her surgeons offered her a wider resection of her bladder, but she refused. Rather, she went on combo estrogen-progestin contraceptive pill and was recurrence-free three months after surgery.

A January 2020 study published in ACTA Scientific Womens Health followed the journey of a 46-year-old woman who had complaints of painful, long, and heavy periods. She also had difficulty urinating, peed frequently, felt pain when she peed, and sometimes had blood in her urine. Her urinary symptoms were cyclical, meaning they followed her period cycle. Fifteen years prior, she had a c-section and a few years ago complained of similar symptoms. A cystoscopy (a tiny camera is inserted inside the bladder to look around) and they found an abnormality inside her bladder called a hamartoma, which was removed. Ad she underwent a another cystoscopy and a small lesion was removed and biopsied. It was confirmed to be Endometriosis. Inside her bladder. This time, a pelvic ultrasound revealed a mass inside her bladder and a multidisciplinary team of surgeons resected the bits of her bladder, removed the mass, and installed a Mirena IUD to help fight the Endo recurrence. Six months later, she remained sympton-free.

In the November 2020 issue of Urology Case Reports, a 37-year-old woman suffered from worsening hypertension, elevated creatine levels, and deep vein thrombosis. She had a medical history of Endometriosis, as well as a year of urinary tract issues: painful urination, incontinence, increased frequency of peeing, and incomplete voiding. She hadn’t had any UTIs, though. An ultrasound showed that both of her kidneys were full of fluid and revealed a mass on her bladder wall. She underwent a cystoscopy and a portion of the mass was biopsied and was considered to be intestinal metaplasia. She was treated a second time for a bladder resection and stent placement. The entire bladder mass was removed and pathology confirmed it was deep infiltrating endometriosis. She began treatment with Lupron Depot, but her creatine levels began to rise again. A CT scan showed no change to her stents, so they placed a nephrostomy  tube from her left kidney (think of an ostomy bag…but for your pee) and her levels improved. She later underwent Botox treatment for her bladder, the pee-tube was eventually removed, and she continued her treatments with Botox and Lupron.

The Journal of Medical Cases published a November 2020 article of a 49-year-old woman a one-year history of increased urination frequency (she peed every two hours without any incontinence). She had no other symptoms. During a routine health check, a mass was on her left ovary and a 4-cm lesion on the outside of her bladder, which appeared to infiltrate her bladder wall. A cystoscopy found a plaque-like substance that had infiltrated her bladder wall. Surgery was performed and a partial bladder resection occurred to remove the lesion (as well as a hysterectomy to remove her uterus and fallopian tubes, but they left her ovaries). Pathology confirmed it was Endometriosis that had grown on the outside of her bladder and invaded through the bladder wall.

What now?

If you are having these or similar symptoms, talk to your doctor.  A little conversation can go a long way.  And, yes, you may have to endure yet another transvaginal ultrasound, a pelvic exam, or other diagnostic tests…but peace of mind is a glorious thing.

*Updated October 5, 2020*

Resources:

ACTA Scientific Womens Health – (Study, Jan. 2020) Intramural Bladder Endometriosis Secondary to Cesarean Section

Endometriosis UK

European Journal of Obstetrics & Gynecology and Reproductive Biology – (Abstract; March 2017) Laparoscopic Management of Ureteral Endometriosis: A Systematic Review

European Urology – (Article; Jan. 2017) Bladder Endometriosis: A Rare But Challenging Condition

Gynecological Surgery – (Abstract, May 2016) Deep Infiltrating Endometriosis Affecting the Urinary Tract – Surgical Treatment and Fertility Outcomes in 2004 – 2013

Gynecology and Minimally Invasive Therapy – (Abstract; Aug. 2016) Laparoscopic Excision of Bladder Peritoneal Endometriosis

International Journal of Reproduction, Contraception, Obstetrics and Gynecology – (Article; Feb. 2017) Combined Transurethral and Laparoscopic Partial Cystectomy for the Treatment of Bladder Endometriosis

International Surgery Journal – (Article, Jan. 2017) Unusual Case of Upper Urinary Tract Obstruction: A Case Report

Journal of Endourology Case Reports – (Article, May 2019) Ureteroscopic Excision of Distal Ureteral Endometriosis

Journal of Medical Cases – (Article; Nov. 2020) Isolated Bladder Endometriosis in a Patient with Previous Cesarean Sections

Journal of Minimally Invasive Gynecology – (Abstract, Jan. 2017) Laparoscopic Management of Ureteral Endometriosis and Hydronephorsis Associated with Endometriosis

Journal of Minimally Invasive Gynecology – (Article, June 2019) Laparoscopic Partial Bladder Cystectomy for Bladder Endometriosis – A Combined Cystoscopic and Laparoscopic Approach

Journal of Postgraduate Medicine – (Abstract, Jan. 2019) – Isolated Intraluminal Ureteral Endometriosis Mimicking Tuberculosis

Urologia Internationalis  – (Study, 2012) Diagnosis and Treatment of Bladder Endometriosis : State of the Art

Livestrong

Mayo Clinic

Human Reproduction – (Study, 2010) Surgery for Bladder Endometriosis : Long-term Results and Concomitant Management of Associated Posterior Deep Lesions

Nezhat.org

Portugese Journal of Nephrology & Hypertension – (Article, 2017) Rare Aetiology of Obstructive Kidney Injury: Bilateral Ureteral Endometriosis

The Journal of Obstetrics and Gynaecology Research – (Article, July 2017) Management of Ureteral Endometriosis with Hypronephrosis: Experience from a Tertiary Medical Center

Turkish Journal of Urology – (Article, 2018) Management of Ureteral Endometriosis and Review of the Literature

Urology Case Reports (Article; 2020) Conservative Management of Bladder Endometriosis with Acute Renal Failure

Urology Surgery – (Blog, 2009) Ureteral Stricture

Journal of the Society of Laparoscopic & Robotic Surgeons – (Study, 2008) Bladder Endometriosis : Possibility of Treatment by Laparoscopy

Journal of the Society of Laparoscopic & Robotic Surgeons – (Study, 2007) Patients with Chronic Pelvic Pain : Endometriosis or Interstitial Cystitis/Painful Bladder Syndrome?

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa