Treatment 10 min read

IC/PBS Treatments: A Practical Guide to Managing Interstitial Cystitis

Treatment options for interstitial cystitis and painful bladder syndrome, from oral medications to bladder instillations and beyond.

| COB Foundation
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If you’ve been diagnosed with interstitial cystitis (IC) or painful bladder syndrome (PBS), you’re probably wondering what treatment options exist. The honest answer: there are quite a few, but none of them work for everyone, and finding the right combination often takes time and patience.

I should say upfront that IC/PBS treatment is more art than science. What helps one person may do nothing for another. Your urologist will likely suggest trying several approaches, and the process can feel frustrating. But most people do find something that helps, even if it takes a while to get there.

Understanding why treatments exist

Before diving into specific options, it helps to understand what’s going wrong in IC/PBS. The bladder wall has a protective lining made of glycosaminoglycans (GAGs). Think of this layer as a shield that stops urine from irritating the bladder tissue underneath. In IC/PBS, this protective layer becomes thin or damaged. Urine then contacts the bladder wall directly, causing inflammation and pain 1.

Different treatments target different parts of this problem. Some try to reduce inflammation. Others attempt to repair or replace the damaged protective layer. Some simply manage pain while other approaches work. This is why combination therapy is common.

Oral medications

Most people start with tablets or capsules because they’re convenient. You don’t need clinic visits for administration, and you can take them at home.

Pentosan polysulfate sodium (Elmiron)

This is one of the few medications specifically designed for IC. Pentosan polysulfate is thought to help rebuild the damaged GAG layer on the bladder lining. The catch: it takes months to work. Most clinical guidelines suggest waiting at least six months before deciding whether it’s helping 2.

In practice, about a third of patients notice meaningful improvement. That’s not a great hit rate, but for those it helps, the relief can be substantial.

One concern emerged in recent years: long-term use has been linked to a specific type of eye damage called pigmentary maculopathy. The risk appears higher with extended use over many years. If you’re on pentosan polysulfate long-term, your doctor may recommend regular eye examinations 3. This doesn’t mean the medication should be avoided, but it’s something to discuss with your urologist and keep in mind.

Antihistamines

Some IC patients have elevated numbers of mast cells in their bladder tissue, which release histamine and contribute to inflammation. Antihistamines like hydroxyzine can help reduce this response.

Hydroxyzine also has mild sedative effects, which can be useful if bladder pain is disrupting your sleep. The evidence base isn’t huge, but many clinicians use it as part of a combination approach, particularly for patients who seem to have an allergic or inflammatory component to their symptoms.

Tricyclic antidepressants

Amitriptyline, an older antidepressant, is commonly used for chronic pain conditions including IC. At the doses used for pain (typically lower than for depression), it can reduce bladder pain and urgency. It also has antihistamine properties and helps with sleep.

The downsides: dry mouth, constipation, drowsiness, and weight gain. Not everyone tolerates it well. But for patients who can manage the side effects, amitriptyline is often effective and relatively inexpensive.

Gabapentin and pregabalin

These medications were developed for epilepsy but are now widely used for nerve-related pain. They can help if your IC symptoms have a neuropathic component, meaning they’re driven partly by abnormal nerve signalling rather than just inflammation.

Finding the right dose takes time. Most doctors start low and increase gradually to minimise side effects like dizziness and drowsiness.

Intravesical (bladder instillation) treatments

When oral medications don’t provide enough relief, or if you want to avoid systemic side effects, instillation therapy puts treatment directly where it’s needed. A thin catheter delivers medication into the bladder, where it stays in contact with the bladder lining for a period before you urinate it out.

DMSO (dimethyl sulfoxide)

DMSO has been around since the 1970s and remains the only bladder instillation specifically approved by the US FDA for IC. It has anti-inflammatory and muscle-relaxant properties.

The famous side effect: garlic breath. DMSO gets metabolised to dimethyl sulfide, which you exhale. Some patients find this tolerable; others find it socially embarrassing enough to stop treatment. The smell typically lasts one to three days after each instillation.

Response rates in studies range from 50% to 70%. Treatment usually involves weekly sessions for six to eight weeks, then maintenance treatments as needed.

Sodium hyaluronate (Cystistat and similar products)

Cystistat contains sodium hyaluronate, a natural component of the bladder’s protective layer. The idea is to temporarily replace the damaged GAG coating, allowing the underlying tissue to heal.

Unlike DMSO, sodium hyaluronate doesn’t cause garlic breath or other notable systemic effects. Studies suggest it helps roughly half to three-quarters of patients who try it. Response develops gradually over multiple instillations, so don’t judge it on one or two treatments.

Chondroitin sulphate

Another GAG component, chondroitin sulphate works similarly to hyaluronic acid. Some products combine both ingredients. A 2012 study of the combination in 126 patients found 87% reported improvement at 12 weeks, though long-term data is more limited 4.

Alkalinised lidocaine (Cystilieve)

Cystilieve and similar preparations work differently from GAG-replacement therapies. They contain lidocaine (a local anaesthetic) in an alkalinised solution that helps it penetrate the bladder lining. The result is direct pain relief.

This approach can provide faster symptom relief than GAG therapies, though the effects are temporary. Some clinicians use it in combination with other instillations, or for patients experiencing acute flares who need quick relief while longer-term treatments take effect.

Heparin

Heparin is better known as a blood thinner, but when instilled into the bladder, it also helps coat and protect the damaged lining. It’s often combined with other agents in “bladder cocktails”. Some patients respond to heparin who don’t respond to other GAG therapies, and vice versa.

Cocktail instillations

Many clinicians mix multiple agents together. A common combination might include DMSO, heparin, hydrocortisone (to reduce inflammation), and sodium bicarbonate (to alkalinise the solution). The evidence for these combinations is largely based on clinical experience rather than rigorous trials, but the approach is widely used.

Other treatment approaches

Beyond medications, several other therapies can help manage IC/PBS.

Bladder hydrodistension

This involves filling the bladder with fluid under general anaesthesia, stretching it beyond its usual capacity. The procedure serves both diagnostic and therapeutic purposes. Diagnostically, it allows visualisation of Hunner lesions (ulcerated areas seen in some IC patients). Therapeutically, some patients experience symptom relief lasting weeks to months after hydrodistension.

The improvement mechanism isn’t entirely clear. One theory is that stretching disrupts pain nerve fibres. Another is that it triggers changes in how the bladder wall responds to filling. Whatever the reason, about 30-50% of patients report at least temporary benefit 5.

The effect wears off over time, and repeated hydrodistensions can be performed if the first one helped.

Fulguration of Hunner lesions

Some IC patients have visible ulcerated areas called Hunner lesions. These can be treated with fulguration (burning) or laser ablation during cystoscopy. Studies show this approach can provide significant relief for patients who have these specific lesions 6.

The catch: Hunner lesions are present in only about 5-10% of IC patients. If you don’t have them, this treatment isn’t relevant. But if you do, it’s worth discussing with your urologist.

Pelvic floor physical therapy

This one surprises many patients. What does physical therapy have to do with bladder pain?

The pelvic floor muscles surround and support the bladder. In IC/PBS, these muscles often become tight and dysfunctional, contributing to pain and urinary symptoms. A physiotherapist trained in pelvic floor disorders can assess whether muscle dysfunction is part of your problem and teach techniques to address it.

Studies suggest pelvic floor therapy helps about 60-80% of IC patients to some degree. It’s particularly useful for patients whose symptoms include pelvic floor dysfunction or painful intercourse. The treatment involves internal and external manual therapy, relaxation techniques, and home exercises.

I’d encourage anyone with IC to at least be assessed by a pelvic floor physiotherapist. It’s non-invasive, has no side effects, and addresses a component of the problem that medications miss entirely.

Sacral neuromodulation

For patients who don’t respond adequately to other treatments, sacral neuromodulation (also called sacral nerve stimulation) is an option. This involves implanting a small device that delivers electrical pulses to the sacral nerves, which control bladder function.

The procedure starts with a trial period using temporary external leads. If symptoms improve during the trial, a permanent implant can be placed. Studies show roughly two-thirds of patients who proceed to permanent implantation experience meaningful symptom improvement.

This is a more invasive option reserved for refractory cases, but it can provide relief when other approaches have failed.

Diet modification

While not a medical treatment per se, dietary changes help many IC patients. Common trigger foods include coffee, alcohol, citrus fruits, tomatoes, artificial sweeteners, and spicy foods. The specific triggers vary between individuals.

An elimination diet, where you remove common triggers then reintroduce foods one at a time, can help identify your personal problem foods. This takes patience, but for some people, dietary modification alone provides significant symptom control.

Building a treatment plan

IC/PBS management typically follows a stepped approach. Start with less invasive options and escalate if needed.

First line: Lifestyle modifications, dietary changes, stress management, pelvic floor physiotherapy

Second line: Oral medications (pentosan polysulfate, amitriptyline, antihistamines)

Third line: Bladder instillations (DMSO, hyaluronic acid, cocktails)

Fourth line: Hydrodistension, treatment of Hunner lesions if present

Fifth line: Neuromodulation, other surgical options

Most patients end up using a combination of approaches. You might take an oral medication, receive periodic instillations, follow a modified diet, and do pelvic floor exercises. The goal is finding the combination that provides acceptable symptom control with tolerable side effects.

What to expect from your urologist

If you’re seeing a urologist about IC/PBS, they should discuss multiple treatment options with you and explain the evidence behind each one. Be wary of anyone who offers only one approach or promises a cure.

Good questions to ask:

  • What response rate does this treatment have?
  • How long before I’ll know if it’s working?
  • What are the side effects?
  • What do we try if this doesn’t help?

Keep a symptom diary. Note your pain levels, urinary frequency, what you ate, and any treatments you received. This information helps you and your doctor evaluate whether treatments are actually helping.

Living with uncertainty

I won’t pretend IC/PBS treatment is straightforward. There’s no single therapy that works reliably for everyone. The condition is chronic, and many patients go through periods of improvement and flare-ups regardless of treatment.

But here’s what I’ve seen: most patients do find some combination of approaches that improves their quality of life. It takes time, it takes patience, and it often takes trying several things that don’t work before finding things that do. The treatment landscape has improved over the past few decades, and research continues.

Work with a urologist experienced in IC/PBS. Be patient with the process. Keep track of your symptoms so you can recognise what helps and what doesn’t. And don’t hesitate to seek a second opinion if you feel your concerns aren’t being heard.


References

  1. Parsons CL. The role of the urinary epithelium in the pathogenesis of interstitial cystitis/prostatitis/urethritis. Urology. 2007;69(4 Suppl):9-16. PubMed

  2. Parsons CL, Mulholland SG. Successful therapy of interstitial cystitis with pentosanpolysulfate. J Urol. 1987;138(3):513-516. PubMed

  3. Pearce WA, et al. Pigmentary maculopathy associated with chronic exposure to pentosan polysulfate sodium. Ophthalmology. 2018;125(11):1793-1802. PubMed

  4. Cervigni M, et al. A combined intravesical therapy with hyaluronic acid and chondroitin for refractory painful bladder syndrome/interstitial cystitis. Int Urogynecol J. 2012;23(9):1193-1199. PubMed

  5. National Institute of Diabetes and Digestive and Kidney Diseases. Treatment for Interstitial Cystitis. NIDDK

  6. Rofeim O, et al. Hunner lesion: a rare cause of suprapubic pain. Case Rep Urol. 2012;2012:645324. PubMed

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Medical Disclaimer: The information provided is for educational purposes only and should not be considered as medical advice. Always consult with a qualified healthcare professional before making any changes to your diet, supplement regimen, or treatment plan.