IC Optimist – Summer Fall 2024 – PDF

This special issue of the IC Optimist is one of our biggest to date with a wide variety of articles, some of which were my way of coping with a sudden and completely unexpected diagnosis of breast cancer last May. I was hoping to spend the summer with trips to the beach, hiking and adopting a dog. Instead, I’ve been recovering from a double mastectomy. The good news is that they did get it all, my lymph nodes were clear and I am considered a cure. Healing is a wonderful place to be.

In this issue:

1. Editorial - The Sobering Cost of Medical Care

Our editorial discusses the shocking cost of medical care when facing a major illness or injury. Not only do I add up the costs of the care I received for cancer but also revealed the actual cost of many IC treatments. I hope you find this interesting because it does relate to the upcoming election which, for me, is about which party will protect our need for affordable health care.

2. Feature Story - Stress, Cancer and IC/BPS

When I was diagnosed with breast cancer last summer, I asked my oncologist “why me?” and “why now?.” Her answer was surprising. Only 15% of breast cancer is linked to genetics. For the rest of us, it’s the result of environmental exposures and/or stress. The latter gave me great pause and I explored, in depth, the research that has linked to cancer to stress and grief, along with the relationship that intense stress has with the onset of IC.

3. Feature Story - Have You Fallen on Your Tailbone?

Have you ever injured or broken your tailbone? Did your symptoms begin after a fall? Coccyx injuries are remarkably common in the IC patient population. Injury rather than a bladder disease is now considered a common cause of IC/BPS.

4. Case Study - An Unusual Cause of Bladder Pain - Bladder Tuberculosis

We’ve been profiling unusual causes for IC symptoms and in this issue we’ve found two unusual conditions that can be misdiagnosed as IC/BPS. Tuberculosis is rampant throughout much of the world and, in some patients, can spread to the urinary tract and bladder. A new study found some cases of BT that had been misdiagnosed as IC/BPS.

5. Case Study - An Unusual Cause of Bladder Pain - Nickel Allergy

This is the first such case which has revealed that a sensitivity to nickel used in medical implants could provoke a rare allergy and trigger the symptoms of IC/BPS.

6. The Latest Research

We review several of the new research studies on IC/BPS that were presented at the AUA2024 meeting. Check out the new study on small fiber polyneuropathy which is found in about 30% of patients which they believe is an indicator of a systemic pain condition rather than a bladder disease. This, of course, is the widespread pain phenotype. This explains why so many of us struggle with very sensitive skin.

7. Self-Help Tip: Ten Common Mistakes That IC/BPS Patients Have Made

It pays to learn from the experience of other patients, particularly those who have learned from their mistakes. We share the most common mistakes that we've seen patients make that may have hindered their healing and recovery.

8. Self-Help Tip: Packing For Vacation With IC

Traveling with a bladder condition can be very challenging but it IS possible. We share some of our best tips to make that vacation a success.

9. IC Awareness Month Kicks Off

September is IC Awareness Month (icawareness.org) and I hope that you will join us. This year, we’re focusing on those patients who don’t respond to bladder treatments. Why? It’s quite likely that they have something beyond their bladder, such as their pelvic floor muscles, driving their bladder symptoms and pain. You can participate in many different ways and, honestly, if not you, then who? We all have to speak out.

10. The Important Role of OTC Supplements in IC/BPS

With the rising costs of treatment as well as the risk of substantial side effects, supplements have provided a viable option for thousands of patients. We share the history of supplements and the IC researchers who developed some of them, along with a review of what is on the market today.

11. Consumer Alert - Xylitol Linked to Cardiovascular Disease and Strokes

Many IC patients have turned to xylitol products to help ease the symptoms of dry mouth caused by several IC/BPS treatments, such as Elavil. Unfortunately, new research and a warning urges patients to reconsider as a firmly established link between this artificial sugar and blot clots has been established. Yikes!

12. Vitamin D and the Pelvic Floor

When your diet is limited and taking some vitamins trigger flares, it's not unusual for some patients to struggle with getting their recommended daily vitamins. It turns out that Vitamin D is particularly important for muscle health.

13. IC Diet Project - Comforting Corn Recipes

With cool nights beckoning, we turn back to one of our favorite comfort foods, corn! Hot cornbread anyone?

Publisher: Interstitial Cystitis Network

Pages: 40