(Here’s part of an email I sent to an IC patient last night who was struggling with severe night time symptoms and bladder pain that describes the many factors that can be contributing to nighttime IC symptoms and pain. – Jill Osborne, ICN President)
#1 – To treat the pain effectively, we have to know what is generating the pain. Is it the bladder wall or is it the pelvic floor?? Pain BEFORE urination is strongly associated with the bladder wall … where as pain AFTER urination is more associated with pelvic floor dysfunction. So, what kind of pain are you having? One? both?? endometriosis? Anything else going on down there?
#2 – Is there any chance that you have untreated Hunner’s lesions… which account for the most severe pain levels in IC patients?? Hunners lesions are very interesting beasts because they aren’t actually like an ulcer. they are more of a nerve running on overdrive. As a result, it takes very specific treatments to disable that nerve… usually fulguration (or a laser), an injection of a steroid into the area or the new LiRIS medical device which has actually healed some ulcers in just two weeks. The good news is that pain usually resolves when the lesion is treated properly. https://www.ic-network.com/conditions/interstitial-cystitis/exploring-treatments/hunners-ulcer-treatment/
#3 – In my experience, that extreme nighttime frequency can be due to a severely irritated bladder wall or Hunner’s lesions. So, it begs the question… are you being perfect with your diet right now. I say this because I get atleast one call a week from a patient sobbing in pain who admit that they are still drinking coffees, green teas etc. etc. And it might be from something in your daily life that you think is bladder friendly that isn’t…. like a MultiVitamin or drinking water from a Brita Water Filter. So, make sure that you familiarize yourself again with the latest diet information on our website. https://www.ic-network.com/patient-resources/diet/diet-introduction/
#4 – What’s the health of your pelvic floor? Was PT recommended?? Are you still doing those exercises? If you can’t afford PT, you can still do the exercises suggested by your PT and/or in the books Heal Pelvic Pain and Ending Female Pain. We even have a DVD by Amy Stein, Healing Abdominal and Pelvic Pain, that demonstrates a LOT of the exercises. You may not know this but the most effective IC treatment study ever funded by the National Institutes of Health showed that physical therapy was far more effective at reducing the symptoms of IC than oral medications like Elmiron. So don’t discount the potential usefulness of physical therapy… especially if you’ve struggled with pelvic floor tension, pain with sex and/or found having a pelvic exam always painful. If any of those are true, then you have some pelvic floor dysfunction which could easily be contributing to what you are struggling with at night. https://www.icnsales.com/pelvic-floor-dysfunction/
#5 – Have you tried any of the other, newer OTC pain options like ProSirona that is used quite successfully by endometriosis and some IC patients. It’s a simple, benign essential oil rubbed into the belly that helps reduce the transmission of pain signals. It was developed by the Endometriosis Association and Claire Ellen Topicals. https://www.icnsales.com/prosirona/ I also use TigerBalm frequently on my left glute for pelvic pain and butt muscle burning pain which I get frequently.
#6 – Do you know what is driving the incontinence? Is your pelvic floor weak?? Do you have a prolapse??
#7 – If you’re not aware of the AUA IC Treatment Guidelines, you need to read up on them. It’s six step treatment protocol that is arranged in six steps and patients generally start at Step One and then move up the line. It would be interesting to see what you’ve actually done in the steps. https://www.ic-network.com/conditions/interstitial-cystitis/exploring-treatments/
The AUA Guidelines are also reinforce three important topics/concepts:
#1 – That pain should be treated promptly and compassionately with combination therapies, including the potential use of opiates and/or non opiates, etc. etc.
#2 – That therapies not effective should be discontinued.
#3 – That if pain and/or symptoms worsen despite treatment, the diagnosis should be revisited to make sure that another medical condition has not been missed (i.e. such as endometriosis, PFD, and a variety of things).
Remember that treating IC isn’t about taking the perfect medication or that a single therapy will treat all of the trouble. There can be multiple factors driving that bladder and pelvic pain and you’ll need to work through all possible causes.