Interstitial Cystitis: Treatment Options and Patient Support - Urology

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What are the issues related to interstitial cystitis?


Dear Dr.
Hsu,
I hope this message finds you well! I am the patient who previously experienced lower abdominal and bladder pain.
I would like to inquire whether APM has stopped importing and distributing in Taiwan, as it seems that major hospitals no longer have it available.
How are IC patients currently being treated? Do heparin and hyaluronic acid bladder instillations require a physician's application for insurance coverage? I have heard that there were clinical trials for DMSO, BCG, and capsaicin, but why were they ultimately discontinued?
Regarding the balloon dilation procedure under anesthesia, how long can the effects be expected to last? Is it necessary to perform the dilation under general anesthesia for better results? I suspect I have this condition; although I have not yet undergone cystoscopy for a definitive diagnosis, I am quite certain.
I recently had a bladder function test, and there was indeed pain during potassium chloride instillation.
I have been consulting with Dr.
Lin Denglong at Beirong.
Currently, I am only taking a tricyclic antidepressant to manage mild pain.

I hope you can provide me with some advice.
I also encourage society to offer more support to IC patients, as unlike other acute patients, it is not immediately obvious that we are suffering.
IC patients often appear normal on the outside but endure significant physical and emotional pain.
Thank you, Doctor, and everyone! Wishing you a happy Year of the Snake.

david, 20~29 year old female. Ask Date: 2013/02/01

Dr. Xu Weikai reply Urology


David: Hello, Elmiron has strict limitations under the National Health Insurance, and prior review is required for its use.
As for whether there are issues with its agency, our hospital does not use it, so I am not sure.
However, I just checked the National Health Insurance Administration's website, and Elmiron is currently still available as a conditional reimbursement medication.
Additionally, hyaluronic acid bladder instillation, as I recall, is also conditionally reimbursed by the National Health Insurance, but it also requires prior review of the documentation, which is quite rigorous.
Regarding bladder dilation, since it involves stretching the bladder, it can cause pain, so anesthesia is necessary.
After dilation, there may be bladder bleeding, so hospitalization for observation for a few days is generally required.
Note: 1.
How was your interstitial cystitis diagnosed? Typically, a bladder biopsy is needed for diagnosis.
2.
For interstitial cystitis, if there is no definitive diagnosis, related medications cannot be used.
However, you can still opt for self-pay options.
3.
Professor Lin is one of the authorities in this field in Taiwan.
If there are any unclear points, feel free to ask again, and we can discuss and research further.
Online responses can only serve as a reference; if necessary, it is still important to seek medical care at a healthcare facility.
This response is from Dr.
Hsu Wei-Kai, Director of Urology at Taitung Hospital, Department of Health, Executive Yuan.

Reply Date: 2013/02/01

More Info


Interstitial Cystitis (IC), also known as painful bladder syndrome, is a chronic condition characterized by bladder pain, urgency, and frequency of urination. The exact cause of IC remains unclear, but it is believed to involve a combination of factors, including inflammation, bladder lining dysfunction, and possibly autoimmune responses.
Regarding your inquiry about the treatment options for IC, it is important to note that management strategies can vary significantly among patients due to the heterogeneous nature of the disease. Traditional treatments include lifestyle modifications, oral medications, bladder instillations, and physical therapy.
1. Current Treatment Options: As you mentioned, the availability of certain medications like Elmiron (pentosan polysulfate sodium) may be limited in Taiwan, which can pose challenges for patients seeking effective treatment. In the absence of Elmiron, other options include:
- Oral Medications: Antidepressants (like tricyclic antidepressants) and antihistamines can help manage pain and discomfort.

- Bladder Instillations: Treatments such as heparin and hyaluronic acid can be administered directly into the bladder. These procedures typically require a physician's approval for insurance coverage, as they may not be universally covered by health insurance plans.

- Pain Management: Non-steroidal anti-inflammatory drugs (NSAIDs) or other analgesics may be used to alleviate symptoms.

2. Clinical Trials and Alternative Treatments: You mentioned DMSO (dimethyl sulfoxide), Bacillus Calmette-Guérin (BCG), and capsaicin. These treatments have been explored in clinical trials but have not gained widespread acceptance due to inconsistent results or potential side effects. DMSO, for example, has shown some promise in reducing pain but is not commonly used due to its side effects and the need for careful administration.

3. Hydrodistension: This procedure involves distending the bladder with fluid under anesthesia to relieve symptoms. While some patients report relief, the duration of effectiveness can vary. Generally, the relief may last from a few weeks to several months, but this is highly individual. Full anesthesia is often preferred for comfort and to ensure the procedure is performed safely, although some practitioners may perform it under local anesthesia.

4. Diagnosis and Support: It is crucial to obtain a definitive diagnosis, typically through cystoscopy, to rule out other conditions that may mimic IC symptoms. Given your symptoms and the potassium chloride instillation test indicating pain, it is advisable to pursue further evaluation with a urologist who specializes in IC.
5. Patient Support: Living with IC can be challenging, both physically and emotionally. Support groups, whether in-person or online, can provide a valuable network for sharing experiences and coping strategies. Encouraging awareness about IC is essential, as many people may not understand the invisible nature of the pain and discomfort experienced by patients.

In conclusion, while the landscape of IC treatment may be changing with the availability of certain medications, there are still several options to explore. It is essential to work closely with your healthcare provider to tailor a treatment plan that addresses your specific symptoms and needs. Additionally, fostering a supportive community can help alleviate some of the emotional burdens associated with this chronic condition.

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