Tarlov Cysts and Interstitial Cystitis: Is There a Connection?

Many people diagnosed with Interstitial Cystitis spend years searching for answers about chronic bladder pain, urinary urgency, pelvic pressure, and painful sitting. What many patients don’t realize is that some of these symptoms may overlap with symptomatic Tarlov Cyst Disease.

At the Tarlov Cyst Society, we regularly hear from patients who were initially diagnosed with Interstitial Cystitis and later discovered they also had symptomatic Tarlov cysts affecting the sacral nerves.

While research has not yet proven a direct causal relationship between the two conditions, there are important anatomical and neurological reasons why these diagnoses may overlap.

Tarlov Cysts and Interstitial Cystitis Symptoms Often Overlap

Tarlov cysts are cerebrospinal fluid-filled nerve root cysts that most commonly develop in the sacral spine. These sacral nerves help control the bladder, bowel, pelvic floor, and sexual function.

When symptomatic cysts irritate or compress these nerves, patients may experience symptoms that closely resemble Interstitial Cystitis, including:

• Urinary urgency

• Frequent urination

• Bladder pain or pressure

• Burning sensations without infection

• Pelvic pain

• Pain while sitting

• Difficulty emptying the bladder

• Pelvic floor dysfunction

Because these symptoms are commonly associated with bladder disorders, many patients are referred through urology pathways long before spinal imaging is ordered or reviewed.

Research Supporting Sacral Nerve Involvement

Medical literature has documented bladder and pelvic dysfunction in patients with symptomatic Tarlov cysts.

A publication in Neurosurgical Focus discussed how symptomatic sacral Tarlov cysts may produce pelvic, bladder, bowel, and sexual dysfunction due to involvement of sacral nerve roots.

Additionally, the meta-analysis titled Global incidence of spinal perineural Tarlov's cysts and their morphological characteristics confirmed that symptomatic Tarlov cysts can produce neurological symptoms related to sacral nerve dysfunction.

Another review published through the National Institutes of Health (NIH) describes symptomatic Tarlov cysts as capable of causing:

• Perineal pain

• Urinary dysfunction

• Bowel dysfunction

• Sexual dysfunction

• Sitting intolerance

These symptoms significantly overlap with those experienced by many patients diagnosed with Interstitial Cystitis.

Could Some “Interstitial Cystitis” Cases Actually Be Neurological?

In some individuals, the bladder itself may not be the primary source of symptoms. Instead, irritated sacral nerves may create referred pain and abnormal bladder signaling that mimics Interstitial Cystitis.

This possibility becomes especially important when:

• bladder treatments fail,

• urine cultures remain negative,

• symptoms worsen with sitting,

• or MRI imaging reveals sacral Tarlov cysts.

Unfortunately, Tarlov cysts are frequently omitted from radiology reports or dismissed as “incidental findings,” despite growing evidence that approximately 15% of Tarlov Cysts become symptomatic.

Connective Tissue Disorders May Help Explain the Overlap

Another possible explanation involves connective tissue disorders such as Ehlers-Danlos Syndrome, Loweys-Dietz Syndrome, and Marfan's.

Research has increasingly linked symptomatic Tarlov cysts with connective tissue disorders that affect collagen strength and tissue stability. These same disorders are also associated with:

• pelvic floor dysfunction,

• autonomic dysfunction,

• chronic pain syndromes,

• and bladder symptoms.

This may help explain why some patients experience overlapping diagnoses involving:

• Tarlov cysts,

• Interstitial Cystitis,

• pelvic pain,

• dysautonomia,

• and connective tissue disease.

The Importance of Proper MRI Review

Many patients with chronic pelvic or bladder symptoms never receive a detailed review of their sacral spine imaging.

At the Tarlov Cyst Society, we believe patients deserve:

• proper evaluation of MRI findings,

• clear reporting of Tarlov Cyst size and location,

• and informed discussions about whether cysts could be contributing to symptoms.

Not every Tarlov cyst becomes symptomatic. Not every patient with Interstitial Cystitis has Tarlov cysts. However, the symptom overlap is significant enough that these conditions should not automatically be viewed in isolation.

Final Thoughts

For many patients, discovering Tarlov cysts provides a missing piece of a much larger puzzle involving chronic pelvic pain, bladder dysfunction, and nervous system involvement.

More research is still needed to understand the relationship between Tarlov Cysts and Interstitial Cystitis fully. However, existing anatomy, published symptom patterns, and patient experiences strongly support the need for greater awareness among clinicians and patients alike.

When sacral nerves are involved, bladder symptoms may be neurological — not simply urological.

That distinction matters.