Interstitial cystitis, like any chronic medical challenge, can pose a financial as well as physical burden. It can certainly be frustrating, especially when you aren't seeing the progress you're hoping for immediately, but not getting treatment can have a long-term cost. If left untreated, symptoms can force you to miss or leave work, or may take longer to resolve once you do start getting treatment. We encourage patients to think of getting treatment as an investment in the future, and our patients have helped to develop a list of ways to see meaningful, sustained improvement without breaking the bank. (We have a full section on this topic in The Interstitial Cystitis Solution)
The PelvicSanity Symptom Log for IC (feel free to download and print out a copy) is a great tool in your IC journey - it allows you track what is going on with your body so you can identify what is working and what is setting you back.
1. Focus on What Really Helps
It may seem like an obvious point, but in order for a treatment to be cost-effective, it first has to be effective! Sometimes the financial considerations can start to take up more of your thinking than your health, but always work to prioritize the effectiveness of the treatments you've had. It may be worthwhile to save up for a treatment that you've found to be highly effective, instead of going often for a treatment that isn't really working.
For this reason we recommend our patients try many different treatments, especially early in the IC journey. Everyone's body is different, and responds to different therapies. A holistic approach that incorporates several different elements is always the most effective, and it can help you identify early on which treatments are the most valuable for you.
2. Ask about Generic or Over-the-Counter Drugs
When a doctor first thinks about a prescription for a patient, often they think about the brand-name drug that's new to the market (partially because that drug company has representatives who are constantly pushing their drugs and providing free samples). While sometimes a new drug may be a breakthrough or offer additional benefits, many times it's using the same active ingredient as a generic drug that is far, far less expensive.
When you do have a prescription, the cost can vary by where you actually get the prescription filled. There are online sites (including GoodRx and RxPriceQuotes) where you can look up how much the same drug will cost at different pharmacies. Sometimes these savings can be substantial - for example, in our area there was an annual difference of around $800 between the most-expensive and least-expensive pharmacies for Elmiron.
There are also options to take over-the-counter drugs rather than their prescription counterparts. Antihistamines are considered in the second line of treatment according to the AUA - these can be prescription drugs, but you can also ask your doctor about the over-the-counter versions, many of which contain the same active ingredient.
Finally, for drugs without a generic version, you can consider contacting the manufacturer directly and seeing if they have a patient assistance program that can help with the cost of your drug.
3. Take your Health Into your Own Hands
There's a lot that you can down on your own to help with IC symptoms, and patients who put in the most work see the best results. Most of these techniques - both mental and physical - are free! If you've had to limit your treatment options because of cost, invest some time in yourself. Stretching (see the IC Stretching Regimen), self-massage, deep breathing, warm baths, meditation, and other techniques can
reduce the pain and/or symptoms of IC naturally.
4. Do Bladder Instillations Yourself
Bladder instillations are a common IC treatment, considered a second-line therapy by the American Urological Association's IC Guidelines. For many patients, that means a weekly (or even bi-weekly) trudge into the urologist's office for the instillations, incurring the cost of treatment and co-pays. However, this is a technique that you can be taught to do yourself. If you go this route, you can have the nurse at your urologist's office teach you how to do the procedure yourself, and get a prescription for the medication that you can pick up at a compounding pharmacy.
The other benefit of doing these instillations yourself is that you can use them as a rescue medication (if they are part of your personal Flare-Busting Plan) or take it with you as you travel.
5. Turn Yourself (or your Partner) into Your Physical Therapist
There is a lot that your physical therapist can teach you in just a few visits about your pelvic health. At PelvicSanity, we have patients coming from all over the world for consultations, where in 2-3 visits we teach them self-care techniques they can do when they go home. If you have a helpful partner, they can also learn these physical therapy techniques.
Doing some of these exercises or self-care techniques yourself can either accelerate the benefits of physical therapy if you're able to go regularly or decrease the frequency of visits that you need to improve. If possible, ensure that you're still seeing your PT regularly to assess your progress and update your self-care, but putting in the work at home can greatly improve your physical therapy outcomes.
6. See a Specialist
The decision to see a specialist can be a difficult one for IC patients. Sometimes a true specialist requires a long drive (or even a plane flight), or they may be out of network for your insurance. However, at least in the experience of our patients, they are often worth it, even if just for a single visit to get a plan of care going forward. With a non-specialist, you may spend months or years treating 'phantom UTIs' or without any clear plan - even a single visit to a specialist can give you a concrete diagnosis and get you started on your healing journey.
7. Try a Supplement
Even though we're conditioned to expect prescription medication to be the answer, with IC there are some supplements that have been shown to be just as effective in studies as the much more expensive medication. Some of the most common supplements that have shown positive effects are:
L-Arginine - A common amino acid in the body, L-Arginine can be found in many different foods. It is a precursor to nitric oxide, a molecule that helps open up blood vessels and increase circulation, which may be able to help clear away some of the inflammation that builds up in the pelvic region with IC. In a double-blind, controlled study of about fifty patients, 1,500 mg daily of L-Arginine reported an overall improvement in their symptoms of 48%.
Calcium Glycerophosphate (Prelief) - In a survey conducted by the Interstitial Cystitis Association, Prelief was the highest-rated supplement, with nearly 75% of patients reporting a positive effect. When taken right before meals or eating a trigger food, the supplement has been reported to reduce both pelvic pain and urgency. This may be a great option for patients who are highly food-sensitive.
Aloe Vera - Hypothesized to help provide the building blocks of the bladder lining, oral aloe vera pills have been reported by patients to help with urgency/frequency, pain, and urethral burning.
CystoProtek - A combination of different supplements, CystoProtek is another common choice for patients with IC. These pills contain three components that are building blocks of the bladder lining, as well as two anti-inflammatory supplements.
Omega-3 Fish Oil - Omega-3 is a type of oil found in (you guessed it!) fish that helps to fight inflammation. It's counterpart, Omega-6, is found in processed foods and increases inflammation - not surprisingly, most of us consume far more of the bad Omega-6 than the good Omega-3 oils. Interstitial cystitis and pelvic pain both cause inflammation to build and linger around the bladder and pelvic floor, causing additional pain and dysfunction. When looking for a good Omega-3 supplement, try to find one with a 1.5:1 ratio of EPA:DHA, the two major components.
8. Become an Insurance Expert
There is a disconnect between you and your medical insurance provider - you want the best care to help you get better, and they want to avoid having to pay your claims. It is routine for insurance companies to deny claims, whether because of an error in the paperwork, lack of pre-approval, or simply a 'mistake' on their end. Whatever the reason, it's up to you to be your own advocate.
This can start even before you choose a plan - if you have an option in your insurance plans, make sure to evaluate the different options and determine which will be more cost-effective for you. If you're switching insurance networks, make sure that the doctor or specialist you want to see still accepts that insurance. A Health Savings Account (HSA) is a great way to put aside money for your health costs that is tax-deductible, basically saving you 15-25% on your medical bills.
Don't be afraid to be 'the squeaky wheel' that gets the grease. The majority of the time an insurance company denies a claim the patient is actually covered, but some patients just let it go and never call their insurance company back. You can always appeal a ruling, and eventually those appeals (if the insurance company doesn't cave) go to a third-party for review, where patients win more than half of the time. While it's really frustrating - some patients say this can feel like it's own full-time job - making sure you're getting the most out of your insurance company can have huge financial benefits.
In Conclusion
It's always best to focus on the things that you can control - focus on the treatments that are helping you, and the ones you can do yourself. Remember that your health is the most important thing, and that getting better is the most cost-effective thing you can do in the long-term. Not all of these suggestions may be pertinent for you, but hopefully you can incorporate at least a few of them to make a difference in your IC Journey
Additional Resources
Dr. Nicole Cozean is the founder of PelvicSanity physical therapy, Orange County's premier pelvic floor physical therapy clinic. One of only 270 PTs to be board-certified in the pelvic floor, and the first PT to serve on the ICA Board of Directors, Nicole is the author of the acclaimed and best-selling book The Interstitial Cystitis Solution (2016). She is an adjunct professor at her alma mater, Chapman University. The PelvicSanity blog focuses on presenting practical, positive information to help patients beyond the walls of Nicole's clinic.