Why is interstitial cystitis (IC)/bladder pain syndrome (BPS) so difficult to treat?
The underlying cause of interstitial cystitis/bladder pain syndrome is not clear and may be different depending on the individual. Multiple factors may be involved including:- Chronic bacterial infections
- Autoimmune conditions
- Allergic reactions and excess mast-cell activation (which causes histamine release)
- Exposure to irritating elements or toxins
- Food reactions
- Psychosomatic (mind-body) factors
- Chronic inflammation
- Bladder trauma
- Disruption of the bladder’s GAG (glycosaminoglycans)/proteoglycan layer
- Pelvic floor dysfunction
What are the symptoms of interstitial cystitis (IC)/bladder pain syndrome (BPS)?
- Discomfort, increased bladder pressure and pain that often gets worse as the bladder fills
- Pain can be in the bladder, urethra, vulva, vagina, male genitalia, rectum or lower back
- Increased urgency and/or frequency with urination (up to 30 times per day in some cases!)
- Worsening of symptoms associated with sexual intercourse or vaginal penetration
- For many women, pain is worse during menstruation
- About 5-10% of interstitial cystitis (IC)/bladder pain syndrome (BPS) cases present with ulcers (called Hunner’s ulcers) and bleeding in the bladder
How is interstitial cystitis (IC)/bladder pain syndrome (BPS) diagnosed?
Interstitial cystitis (IC)/bladder pain syndrome (BPS) tends to be a diagnosis of exclusion. It’s critical to differentiate chronic UTI (urinary tract infection) from interstitial cystitis (IC)/bladder pain syndrome (BPS). Your doctor should take a comprehensive patient history and order testing to rule out infections, neurological disorders, kidney stones, cancer, endometriosis, pelvic masses, prostate enlargement and other structural abnormalities.Interstitial cystitis (IC)/bladder pain syndrome (BPS) is often associated with other conditions.
The majority of the patients I’ve seen with IC/BPS had other chronic health concerns. Studies have shown that autoimmune and other conditions such as Sjögren’s, systemic lupus erythematosus (SLE), inflammatory bowel disease (Crohn’s and ulcerative colitis), allergies, irritable bowel syndrome (IBS), chronic fatigue, sleep disorders, chronic migraine and fibromyalgia are more common among people with interstitial cystitis/bladder pain syndrome than in the general population. The presence of allergies in IC/BPS patients has been estimated at 40-80% of those with the condition. It’s likely that interstitial cystitis (IC)/bladder pain syndrome (BPS) shares many of the same underlying inflammatory and immune challenges seen in these other disorders.How do you treat interstitial cystitis (IC)/bladder pain syndrome (BPS)?
Because there are multiple factors to consider in the underlying cause of IC/BPS, there is no “one size fits all approach.” The American Urological Association (AUA) has recommended a step-wise approach to treating interstitial cystitis (IC)/bladder pain syndrome (BPS).- First-line treatment includes education, self-care, behavior modifications and stress management.
- Second-line treatment may include physical therapy, pain management and medications. These medications may be given orally or inserted directly into the bladder using a catheter (intravesical therapy).
- Third-line treatment may include cytoscopy with hydrodistention or treatment of Hunner’s lesions with laser, electrocautery (burning) and/or injections. Cytoscopy is the insertion of a small tube through your urethra so that the doctor can see the inside of your bladder. During hydrodistention, the doctor fills the bladder to a high pressure state with fluid in order to see any abnormalities associated with interstitial cystitis.
- Fourth-line treatment may include Botox injections or neurostimulation. Neurostimulation involves surgically inserting a small device into the body. The device sends out mild electrical signals that “compete” with the pain signals traveling between the spinal cord and the brain.
- Fifth-line treatment is Cyclosporine (an immune-suppressing drug).
- Sixth-line treatment includes major surgery.
- Mental and Emotional Health: There is a clear connection between the health of the mind and body. Relaxation techniques and stress management are recognized as an important component of managing IC/BPS symptoms.
- Sleep: Sleep quality and quantity are important for overall health and healing. Poor sleep patterns and lack of melatonin may play a role in interstitial cystitis (IC)/bladder pain syndrome (BPS).
- Diet: Many interstitial cystitis (IC)/bladder pain syndrome (BPS) sufferers find that certain foods and beverages, especially acidic foods, can be a trigger. Consuming a whole-foods diet while avoiding refined, sugary and processed foods is important for decreasing inflammation. Consuming collagen-rich foods such as bone broth or collagen powder can provide precursors to glycosaminoglycan (GAG) formation and may support reduced bladder permeability and healing. Some people may benefit from an Autoimmune Paleo (AIP) diet or low histamine diet. I’ve also found food sensitivity testing to be helpful in identifying trigger foods for my patients.
- Activity: Exercise and activity that is appropriate for your current level of health can reduce inflammation and support overall health.
- Nutritional Status: Vitamin D is the most common nutrient deficiency I find in practice. It plays a very important role in immune function and overall health. Vitamin D deficiency has also been linked with pelvic floor disorders. Other vitamin and mineral deficiencies can contribute to poor health and immune function. My favorite test to check for nutrient deficiencies is the micronutrient test by SpectraCell Laboratories.
- Gastrointestinal Health: It is estimated that humans have about 2.5-5 lbs of symbiotic bacteria, fungi, viruses and parasites in our digestive tract that play a crucial role in our immune function and overall health. Infections or imbalances in these microbes can be a chronic source of inflammation and immune stimulation that can contribute to autoimmunity. In practice, I use the DNA-based stool test from Diagnostic Solutions Lab to assess for infections, gastrointestinal immune function and digestion.
- Hydration: People with interstitial cystitis (IC)/bladder pain syndrome (BPS) may be tempted to limit their fluid intake to decrease their frequency of urination. However, adequate hydration is important for overall health and helps to dilute irritants and toxins in the urine. Adequate fluid intake is also important for preventing urinary tract infections and constipation which can make symptoms of interstitial cystitis (IC)/bladder pain syndrome (BPS) worse. I’ve also had patients report significant benefit from drinking alkaline water.
- Environmental Exposures: Compounds such as mold, pollen and chemical exposures can lead to allergies and an increase in mast cells and histamine. Several studies have shown a link with elevated mast cells and histamine in interstitial cystitis (IC)/bladder pain syndrome (BPS). Overall, there is agreement that mast cells play a role in pain syndromes including interstitial cystitis (IC)/bladder pain syndrome (BPS). Given the high number of IC/BPS patients with allergies and other immune challenges, addressing environmental factors is an important aspect of treatment.
- Structural Integrity: Tight pelvic floor muscles are often a component of IC/BPS. Physical therapies like myofascial therapy and acupuncture can be helpful for muscle relaxation and decreasing pain.
- Genetics: There are multiple genetic variants or SNPs (single nucleotide polymorphisms) including MTHFR, DAO, MAO, HNMT and PEMT that can lead to excess histamine and potential aggravation of interstitial cystitis (IC)/bladder pain syndrome (BPS). Optimizing your nutrients and managing stress can support better histamine balance. Dr. Ben Lynch has written a great article about histamine intolerance, methylation and MTHFR.
- Treating the Whole Person: As mentioned previously, interstitial cystitis (IC)/bladder pain syndrome (BPS) is often associated with other conditions or health challenges. Naturopathic doctors typically spend 90 minutes or more in their new patient visits to really understand and address all of the factors that contribute to a person’s state of health.
Additional natural strategies for interstitial cystitis (IC)/bladder pain syndrome (BPS) include:
- Mast cell stabilizers such as quercetin and buffered vitamin C (non-citrus source) can help decrease histamine release.
- Urtica dioica (stinging nettles) can be helpful due to anti-inflammatory and antihistamine properties.
- Calcium glycerophosphate is a mineral complex that can be used to buffer acidic foods. This is best for occasional use. Long-term use is not recommended because it can decrease stomach acid and compromise digestion.
- Demulcent herbs can help protect and soothe the bladder lining: Althaea officinalis (marshmallow…the root, NOT the candy! 🙂 ), Zea mays (corn silk), Avena sativa (oatstraw), Ulmus rubra (slippery elm) and Aloe vera.
- Essential fatty acids such as fish oil can support healthy cell membranes and decreased inflammation.
- Anti-spasmodic herbs can help with pain relief.
- Probiotics and immunoglobulins for improved GI health and immunity.
- DAO (diamine oxidase) enzymes to help break down histamine.
Final Message
If you’re suffering from interstitial cystitis or bladder pain, please know that you can get better. Symptoms are your body’s way of telling you that something in your life is out of balance. There are multiple causes of this painful condition, and it will take some detective work to uncover the reasons why you’re having these symptoms.Do you suffer from interstitial cystitis or bladder pain? What have you tried that has helped you? Comment below!
The naturopathic doctors (NDs) at Attune Functional Medicine proudly serve the Denver metro area including Broomfield, Boulder, Arvada, Louisville, Thornton, Lafayette, Westminster, and Erie. Telehealth is also available for long-distance care.
Any comments on aloe Vera capsule regimen for painful bladder syndrome? I am starting my third week on it. Manufacturer says it could take a month or more for relief. Thank you.
Hi Bill, Thank you for your question. Unfortunately, I’m not familiar with that regimen. Let us know if you try it!
“Psychosomatic (mind-body) factors”
I’m sorry but that shouldn’t even be on this list. Too many in the medical profession continue to fall back on this for everything they have not figured out. That is a cruel and lazy habit. My goodness, haven’t we yet learned the lesson from the time when things like asthma, MS, and Epilepsy were ascribed to being diseases of hysteria?
The rule that says the simplest answer is usually the correct one is also wrong and an easy fallback for doctors.
The body is extremely complex and there is still so much we do not know. Doctors need to realize that if the patient says something is going on physically, it is. Trust the patient rather than calling the patient crazy and being dismissive of his or her complaints.
I’m with you 100%! Many doctors use the “psychosomatic” argument when they don’t have the answers. I really should have clarified that this is not at all my practice style or how I approach my patients. Rather, this article was meant to include a comprehensive overview based on the scientific literature. And, unfortunately, the medical research is riddled with psychosomatic explanations for I.C. I have found that there are, in fact, valid physical reasons for these complex conditions. I do not in any way ascribe to the belief that it’s “all in your head.” Thank you for your important comment, Judy!
There is an emotional health aspect to it, for sure. For me, I became extremely anxious and irritable because doctor after doctor dismissed my symptoms as “women’s problems”. They weren’t willing to dig and try to get to the root of it. They merely wanted to treat the symptoms. “But I want this to heal” I would say. To that, the docs more or less rolled their eyes. Most tests came back negative for an infection and I was told that because this one type of test showed no bacteria (a test that is ancient compared to tests that are available with today’s technology), that I had no infection, despite the presence of blood and immune cells in the samples. And being in severe pain, cloud and foul smelling urine, etc. Several (standard) tests came back positive for an infection- only after I purposefully allowed my urine to become extremely concentrated. I kept asking for other types of urine tests to be done and I was told “You are chasing unicorns”. (I asked for a DNA sequencing test or broth culture- just something else no one would try! It might not turn up any answers, but I’m paying for it anyway! The docs seemed insulted and would not even hear me out.). I finally gave up on doctors wanting me to take OAB meds and go see a psychologist. It’s no wonder patients with these kinds of conditions get so worked up and seem “hysterical”. If the doctors I saw had to live with this pain and total disruption to life with NO ONE REALLY LISTENING, they might be a little upset, too!! Now I’m working with an integrative medical practitioner and I have seen so much improvement in just a few months. My symptoms are decreasing. With the lowered pain levels I also feel less anxiety. Who knew!
Thank you for sharing your story Amber. I’m so glad you found an integrative medical practitioner to help you. I’m sure your story will help someone else!
You are missing his point. He isn’t saying the person has a psychological problem. Every health issue affects your mind. The mind and body are connected. He is promoting the idea of taking care of your mental well being as well as you physical well being. Meditation has changed my life, physically as well as mentally. Everyone is looking for a quick fix and want a doctor to give them something they can “take” to fix it. There isn’t always a “fix”. You have to do the work sometimes and it’s your responsibility to take care of the foundation of what your body needs. Dig deeper instead of pointing fingers, it will change your life.
Fabulous article. Informative. I have been suffring with interstitial cystitis from past 3 years. Made a lot of research on it. I summarized the alternative medical treatemets from various blogs and articles which can be found in this article. Great job. Thank u.
Thank you so much for the kind feedback, Allu!
i have postcoital cystitis and e.coli. they keep on giving me antibiotics and i m so frustrated. suggestions?
Hi Laia, I have found when people get recurrent infections there is usually an underlying imbalance in gut flora that can affect the immune response. It’s important to work with a doctor who can test for infections, blood sugar problems or other toxicity such as mold that can set us up for gut flora imbalances. Just know that there is always an answer. Wishing you the best!
Hi, Laia!
I’ve had postcoital cystitis too and Dr.Alison’s answer is 100% true: gut flora, sugar… I’m lactose intolerant too. But there is always an answer, of course! In my case I found sublingual D-mannosa from an italian brand. For the postcoital cystitis was excellente!!
Good luck!
Can you specifically address cystitis cystica. My uro wants to put me on long term antibiotics which I am not in favor of. What other options (the more natural the better) do I have?
Thank you for your question Violet. The cause for cystitis cystica can be complex and vary from person to person. I highly recommend working with a functional medicine provider or naturopathic doctor. I find that advanced testing can be very helpful for figuring out the underlying cause and guide more specific treatment. Hope this helps!
I have had night chills for 8 years that began with bph. 5years after, I had laser surgery for bph but chills continued. Alcohol, spicy food and sugary desserts always triggered this condition after 2 hours asleep. I have to urinate at about the same time as the chills appear. Could this be a bladder issue?Interstitial cystitis? 7 doctors have tried to treat with several drugs but no real help.
Hi John, Your mention of symptoms after alcohol and sugary desserts makes me wonder if blood sugar fluctuations and/or yeast overgrowth could play a role. I highly recommend working with a functional medicine provider or naturopathic doctor to help you figure this out. Wishing you all the best!
Just found I have Interstitial cystitis. Doctor is prescribing 6 week treatment of a cocktail for the bladder. What is your opinion on this. I had one 2 days ago and it seem to elevate some of the pain, but now its back again. I am so stressed that this will be with me forever
Hi Penny, I’m guessing the bladder cocktail could help alleviate some of your discomfort. I think it will still be important to work with a naturopathic or other integrative doctor to help identify the underlying cause of the interstitial cystitis. I find functional medicine testing to be extremely helpful for proving answers. Wishing you all of the best.
A recent study showed EBV can be be a possible cause of IC.
https://www.ncbi.nlm.nih.gov/pubmed/29653163
I have also read that some practitioners find that IC symptoms seem to appear with bartonella infection.
Hi Monica, Thank you for sharing the EBV study. Yes, there are a number of infections that have been linked with IC including EBV, Bartonella and Lyme. Many times I find that an active EBV infection is linked with immune suppression from other infections or toxins such as mold. Thanks for the great comment!
I have been diagnosed with possible Interstitial cystitis. My doctor has given me the prescription Urelle. I haven’t taken the medicine yet because of possible side effects that might give me a uti. Don’t know if they will make things worse, as I already feel like I have one, but I don’t. Are you familiar with this drug being prescribed for treatment of IC?
As a child I had frequent bladder “infections” all the way through young adulthood, sometimes antibiotics helped and sometimes not…. Leading drs to believe I could have IC. I also had a confirmed progressed stage of endometriosis that I had surgically addressed followed by years of cycle cessation via IUD.
During a “flare” in my young adult life I could usually manage it with drinking 2 pots of herbal tea and a warm bath. My IC/PBS symptoms nearly completely disappeared when I recognized a dairy intolerance and only continued to get better as I went down the rabbit hippie hole of unprocessed, nutrient dense food choices, less alcohol and more physical activity/yoga.
Now in my mid-thirties I removed IUD to have children and my endo symptoms were also greatly improved! I am currently pregnant and unfortunately PBS/IC has made a fierce comeback late into my 3rd trimester. I have I had to intensely modify my diet (nothing processed, acidic, generally strong tasting ie: sugary/spicy/tangy, no dairy, gluten or sugar) to keep discomfort levels under control. Hoping that it’s a weird pregnancy thing and I return to my long time “remission” after birth!
I was born with vesicoureteral refluc which was “fixed” with surgery when I was about 4. Ever since then, I have had chronic urinary symptoms. Only when I was about 22 a urologist told me that I have IC but that there isn’t much that can be done. That was a few years ago now and I can say that there are some things that have been helpful during flare ups.
1. Hydration (with no carbonation)
2.tea blend with marshmallow root, nettles and rosemary
3. rooibos tea
4. putting vinegar in my bath water
great article, thanks! What about uva ursi herb? and what about elviron medication to repair the bladder wall(trying not to take it as u are meant to do so for 3 months). Also, do u know re success rates with dmso instillations with a catheter? have only had one so far and need to do it once a week for 4 weeks! i get extreme pain in my abdomen from IC and i know mines caused by a very bad mold exposure/severe body wide and brain ‘mcas’, thanks a lot, 🙂