Para leerlo en español, clic aquí
Remember, the information on my website, podcast, Instagram, and any other ways I communicate and/or produce content is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan for endometriosis or any other health problems. See my full disclaimer here.
Interstitial Cystitis (IC)/ Painful Bladder Syndrome (BPS)
The evil twins
Interstitial cystitis and endometriosis have been called the Evil Twins Syndrome* in patients with chronic pelvic pain (*coined in a 2002 study by Dr. Maurice K. Chung.) Endometriosis and IC can have similar symptoms, and one reliable study showed that about 40% of people with endometriosis also had IC. When you have endometriosis, it may be hard to know if your symptoms are from endometriosis or from IC/BPS. You don‘t need to have endometriosis lesions on the bladder for endometriosis to cause you bladder symptoms.
What is IC?
Interstitial cystitis/bladder pain syndrome (IC/BPS) officially defined as:
“An unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes.” (Source: IC Network)
The bladder can be a huge driver of pelvic pain. On the other hand, IC isn’t solely a bladder condition, and the bladder has been called an “innocent bystander” in IC by Dr Kenneth Peters, who is the head of Urology at Beaumont University. With the release of the 2022 American Urological Association Guidelines for IC/BPS, IC/BPS is no longer considered to be a bladder
disease but rather it’s now seen as a chronic pain syndrome. They acknowledge that patients fall into three identifiable groups with different treatment priorities:
- Bladder centric – these are patients that have bladder wall dysfunction
- Pelvic floor – these are patients that have tight, sensitive pelvic floor muscles
- Chronic overlapping pain conditions/wide spread pain – these are patients with additional pain syndromes, like IBS, fibromyalgia, vulvodynia, TMJ, etc. This suggests that their central nervous system is involved and that they are in a constant state of “fight or flight”.
Bladder and urinary symptoms often have a component from the pelvic floor and autonomic nervous system that need addressing as well. Studies have shown that about 90% of people with IC have pelvic floor dysfunction. So pelvic floor dysfunction could be causing or exacerbating your urinary symptoms. In fact, the only treatment for IC/PBS that is given an Evidence Strength Grade A by the American Urological Association is manual physical therapy. See pelvic floor dysfunction for resources.
I have struggled with IC since I was 19. It’s important to know that it often takes patients multiple treatments to see continued relief. What helped me most was:
There is no IC diet – it’s individual to each of us. I found some foods, especially spicy foods, made my bladder burn and hurt. Others, like watermelon or alcohol, made me urgently need to go.
It may have been the inflammation, but my endometriosis was playing a huge role in my IC flares. After excision, I no longer had IC flares during my period, and my bladder pain and urgency calmed down immensely.
Emerging info suggests that SIBO may play a role in IC of some patients. After treating my SIBO, my bladder pain completely disappeared.
Calming my automatic nervous system
Like many people, whenever I’m nervous, I get the urge to pee. It took me a long time to learn that my nervous system was dysregulated (perhaps from ongoing trauma I’d experienced as a child), and I was in a constant state of “flight or flight” without even knowing it. I was constantly jumpy and hypervigilant, and I had habits like negative self-talk and perfectionism that kept me in a state of hypervigilence. As I learned this throughout my twenties and did exercises to help my body move more easily into a parasympathetic state, my bladder urgency and frequency lessened dramatically. In my early thirties, I used the Curable app to continue learning how to find safety in my body and calm my easily panicked reactions, which helped my bladder symptoms even further.
Progress can take time!
These changes happened over a decade and not all at once, but after each of these changes, I saw a significant reduction in my symptoms. My score on the PUF questionnaire was a 29 when my IC first began, and now it’s a 10! Remember, we are all individuals, and what you need may be completely different!
For more info
Unfortunately, like with endometriosis, IC/PBS is a condition that is full of misinformation, stigma, and doctors who are not often up to date on the latest treatments. The following resources are a wealth of information to learn more on the condition. This can help you be more informed when working with your doctor on treatment options, or even to realize that your doctor isn’t up to date and you’d like to seek a second opinion.
- IC Network
- Interstitial Cystitis Association (ICA)
- Interstitial Cystitis Solution: A Holistic Plan for Healing Painful Symptoms, Resolving Bladder and Pelvic Floor Dysfunction, and Taking Back Your Life by Nicole Cozean. I recommend this book. It’s easy to read, has well-researched info, and gave me a good understanding of the condition and multifactorial ways to address it. Nicole is a pelvic floor therapist, and on her instagram IGTV she busts 8 common myths about IC. It’s a great series to check out!
- American Urological Association Guidelines for IC/BPS
- AUA 2022 IC/BPS Guideline Fact Sheet – downloadable PDF with expanded info from the IC-Network on the Guidelines above
- Overview of the AUA Guidelines for IC/BPS – downloadable PDF with expanded info from the ICA on the Guidelines above.
- How the bladder generates more pain in people with endometriosis than you’d expect – Video by the Endometriosis Summit
- The Pelvic Pain and Urgency/Frequency Patient Symptom Scale – downloadable PDF from the ICA. Is helpful for monitoring your symptoms before and after treatments.
- Don’t Be Shy About Your IC & Bladder Symptoms When Talking With Your Doctor – helpful language here to describe your symptoms
- Pelvic Floor Dysfunction and Interstitial Cystitis
Related Podcast Episodes
- Endo’s Evil Twin: Interstitial Cystitis/Painful Bladder Syndrome (coming soon)
- Interstitial Cystitis/Painful Bladder Syndrome. Part 2 (coming soon)
- Living with Interstitial Cystitis/Painful Bladder Syndrome. Part 1 (coming soon)
- Living with Interstitial Cystitis/Painful Bladder Syndrome. Part 2 (coming soon)