Bladder Endometriosis

What are the signs to look out for? 

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Similar to those of pelvic Endometriosis, symptoms of urinary tract Endometriosis can also range from mild to the severe and often they are intermittent in nature.

 

They tend to be worse during menstruation or in the lead up (around 2-5 days before). Although some people, especially those within the later stages of Endometriosis (moderate - severe) can experience pain and symptoms outside of menstruation or even continuously throughout the month.

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Conversely, urinary tract Endometriosis can also be asymptomatic – meaning some people may not know they have the condition usually until later when they may undergo a procedure for something else, or when the ureter may become partially or entirely closed.

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Symptoms

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Symptoms can vary from one person to another. Some may experience one or two symptoms whereas others may experience a combination of them.

 

The following symptoms may be associated with urinary tract Endometriosis (the list is not exhaustive) and include:

 

• Pelvic pain

• Pain when urinating

• Pain when the bladder is full

• The feeling of needing to pass urine more urgently or frequently than usual

• A dull ache to acute pain or cramping in the lower back or kidney area (known as loin pain)

• Urinary tract infection (UTI) like symptoms i.e., pain or a burning sensation when urinating; pain in the lower abdomen

• Passing blood in urine may also suggest signs of Endometriosis

 

 

If you are experiencing unusual pain that is stopping you from carrying out your usual daily activities like attending school or work, or if you have noticed changes around your periods or urinary habits, there is a chance you might have Endometriosis, or it could be the cause of something else. Tell your GP as early as possible.

 

 

It's important to know:

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When the urinary tract becomes affected by Endometriosis, the condition is usually found elsewhere, most commonly within the pelvis - meaning those experiencing symptoms of urinary tract Endometriosis may also experience symptoms of Endometriosis affecting other areas in the body at the same time.

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How is bladder Endometriosis diagnosed? 

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This type of Endometriosis can often be difficult to diagnose because sometimes the symptoms can be non-specific (meaning the symptoms are generalised and difficult to pinpoint).

 

Many of the respective symptoms may also appear to be similar to several other conditions, such as a bladder infection; kidney infection; pelvic inflammatory disease (PID) and interstitial cystitis (IC).

 

To further confuse matters, these other conditions can co-exist with Endometriosis. 

 

Diagnosing Endometriosis often requires intimate examinations, assessments, and referrals. The diagnosis itself can be challenging because there isn't a simple test to check for Endometriosis. 

 

At present, the only way to definitively diagnose Endometriosis and its stage of progress, is by undergoing laparoscopic (keyhole) surgery. This is an invasive procedure.

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A history of symptoms, a pelvic exam, ultrasound scan and MRI may help highlight the likelihood of bladder Endometriosis, however laparoscopic surgery – carried out by a gynaecologist and urologist combined with a specialist interest in Endometriosis, is currently the only way to conclusively diagnose the condition. 

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Treatment

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Treatment for urinary tract Endometriosis is similar to that of pelvic endometriosis. It can be helped with a combination of pain relief and anti-inflammatory medications, pelvic floor physiotherapy, and alternative therapies such as acupuncture.

 

Hormonal regulating medications to limit, help regulate or temporarily stop your periods may also benefit. However, for more severe cases, treatment of the Endometriosis may require surgical intervention, if other treatments are not effective. 

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When is the right time to consider surgery?

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Your doctor may recommend surgery for different reasons, these may include:

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• When your symptoms are severe and medical treatments have not worked

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• When Endometriosis is limiting/stopping your kidneys from working properly

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What to expect during surgery

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When Endometriosis is found affecting the urinary tract, the affected area will often need to be ‘shaved’, ‘burnt’ or in some instances (depending on severity) part of the bladder or urinary organ may need to be removed.

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Your surgeon may place a thin scope into your urethra and bladder to diagnose the Endometriosis. Depending on the severity of the Endometriosis, your surgeons may need to remove the part of your bladder that is affected, this is known as a partial cystectomy. In these instances, a temporary catheter and/or stent may be fitted for a short duration of time to allow time for the bladder to heal.

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Your medical team should discuss the available treatments with you, taking into consideration the severity of your symptoms, your age, medical history, and various other individual circumstances along with any possible side effects, risks, and complications.

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Click here to read more about the treatments available. 

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Finding a specialist

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Treatment for Endometriosis is best carried out by a gynaecologist with a specialist interest in Endometriosis. This is because not all gynaecologists are familiar with Endometriosis. Furthermore, not all surgeons are trained specifically in diagnosing and treating the condition.

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Finding expert help early on is an important step to ensuring that you get the care and support you need, preventing delayed or misdiagnosis, poor treatment, and inadequate care.

 

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The importance of seeking specialist help

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Because of the complexities of this type of Endometriosis, surgical treatment is preferably carried out by an accredited Endometriosis specialist – meaning a gynaecologist working with a urologist, colorectal, or thoracic surgeon where required.

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Finding expert help early on can help prevent delayed or misdiagnosis, poor treatment, and inadequate care.

 

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What is an Endometriosis specialist?​

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An Endometriosis specialist is someone whose primary focus is of managing Endometriosis, someone who understands the condition and the ways in which to treat it. A specialist is prepared to work with you to understand your needs and decide together on a treatment plan which may work best for you.

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A good specialist would not hesitate to refer you to another professional who may be more advanced in treating Endometriosis to ensure you get the greatest level of care.

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Why it's important to seek specialist help

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Endometriosis can be seen from clear lesions to pink, red and sometimes dark brown and black patches. These lesions may not always be seen on the surface where instead they can be buried deep beneath various tissues or organs. Therefore, this type of operation requires a high level of skills and expertise as it can be difficult to diagnose by a non-specialist. 

 

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Dedicated nurse specialists

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If you become unwell between appointments, most Endometriosis centres provide an advice line they can call for help.

 

Advice lines are usually run by endometriosis nurse specialists who are available to provide support in time of need.

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Get in touch with your chosen centre and find out the name and contact details of your specialist teams dedicated nurses

 

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What are the risks? 

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When urinary tract Endometriosis is left untreated, there is a chance it can progress, causing the ureter to become partially or (in rarer instances) entirely closed. This can lead to the impairment of function to the kidney, which (less commonly) can result in kidney loss.

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Early diagnosis is KEY.

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