Interstitial Cystitis can be a frustrating condition to live with...what an understatement! At times you feel like no matter what you do, you cannot manage your symptoms. I have felt like I spent my entire life searching and trying to find a cure, or anything that makes the pain better. I am now in a place where I am managing my symptoms really well, and I am not searching anymore. It is so wonderful to be able to mostly just live my life!
What made this better for me is understanding my IC sub type and how to tailor treatments for my exact symptoms. The following information on subtypes is from the IC-Network.com
- IC: Hunner’s lesions – This small subset of patients (10% of the patient population) have inflammatory lesions visible on their bladder wall. In much of the world, only patients with Hunner’s lesions are diagnosed with “interstitial cystitis.” Patients without lesions are diagnosed with “bladder pain syndrome.” Hunner’s lesions require local lesion directed therapy (laser, fulguration, steroid injections) and do not generally respond to oral medications and bladder instillations. A new medical device currently under study, LiRIS (aka LiNKA) is the first treatment in history that has healed and/or reduced the size of lesions in just a two week treatment period.
- BPS: Bladder Wall Phenotype – Patient symptoms often start with a UTI, chemotherapy, chemical exposure or other bladder insult (i.e. drinking excessive amounts of soda, coffee, etc.). Frequency and urgency can occur throughout the day and night. Estrogen atrophy can also influence bladder wall function and sensitivity. Pain increases as the bladder fills with urine and is reduced on emptying. These patients usually find that their pain decreases when an anesthetic (lidocaine) is instilled into the bladder. Treatment priority focuses on calming and soothing the bladder wall, diet modification, OTC supplements, oral medications and other bladder directed therapies.
- BPS: Myofascial Pain Phenotype – These patients often have a history of sports, orthopedic injuries or childbirth trauma. Upon examination, they have pelvic floor tension and the presence of trigger points in their pelvis, abdomen, back and hips that trigger severe symptoms when touched. They may have less diet sensitivity, normal or larger voids, may sleep more comfortably when their muscles are relaxed. Bladder instillation of lidocaine is NOT generally helpful. Treatment priority is pelvic floor physical therapy.
- BPS: Neuralgia Phenotype – These patients can have pelvic floor muscle tension or other causes of pudendal nerve compression. This causes severe burning or electric pain when sitting, “sensory abnormalities in the pudendal distribution” and a positive Tinel’s sign (tingling or pins and needles when the nerve is tapped gently). Pain is not typically linked to bladder function. Treatment starts with identifying causes of injury/irritation, physical therapy and stretching for tight muscles and analgesics specific for neuropathic pain. Nerve blocks can be both diagnostic and therapeutic when conservative measures fail. Surgical nerve release is infrequently needed but can be effective in carefully selected patients.
- Multiple Pain Disorders/ Central Sensitization – These patients have multiple pain disorders (i.e. IBS, vulvodynia, fibromyalgia, etc.). Dr. Payne wrote “Their prognosis is inherently different and the invasive treatments that may be appropriate for pelvic pain phenotypes could actually make things worse…Clinicians should proceed much more cautiously.” These patients often demonstrate other signs of neurosensitization including extremely sensitive skin, diet sensitivity, drug sensitivity, chemical sensitivity and even visual sensitivity. Most also have an extremely sensitive sense of smell. Treatment priorities focus on treating all pain generators to reduce the overall volume of pain in the nervous system, as well as avoiding therapies that can be traumatic and/or irritate nerves. Patients are also encouraged to try cognitive behavioral therapies so that they can learn to control stress and other potential flare triggers. The goal is to maximize the patient’s ability to function in normal activities. Much current research is directed toward this phenotype including the NIDDK MAPP program.
I am of a subtype number 6, with pelvic floor dysfunction, central sensitization, fibromyalgia, Ankylosing spondylitis (A type of inflammatory arthritis in the spine and large joints in the body) and migraines. With this informationguiding what types of treatments will most likely be effective, I have been able to stop a lot of things that were just not working for me and focus on things that do help me. I don't bother with many things that target the bladder wall, I don't have issues there. You could say that I don't have IC, but rather Painful Bladder Syndrome.
Here is a list of common everyday things that I do to manage my IC:
- Elimination diet focusing on bladder AND bowel health. There is a nerve that is shared between the bowel and the bladder. I find that if I am having IBS type symptoms my bladder is going to be hurting as well. I have also done a bit of a FODMAP diet as well
- Squatty Potty. Learning how to have a bowel movement without straining has made such an enormous difference in my Pelvic floor dysfunction symptoms (PFD) You don't need to buy a squatty potty, you could use any stool. Their HILARIOUS and informative ad is here
- Keeping Stool loose. I use just a bit of peglyte everyday to keep my bowels moving. I tend to get constipated. It makes painful gas, and then I need to strain to have a bowel movement, not a great combination! You may try other things to keep from being constipated, I tried many many things and this is by far the easiest most effective way for me.
- I do take anti-depressants to help manage my anxiety. I had NO idea how anxious I was until I found a medication that worked for me. It was the third type of anti-depressant that I tried. These medications are not easy, but it has honestly changed my life. Anxiety is linked with PFD. If your body is constantly in a fight, flight or freeze mode, your pelvic floor muscles are going to be engaged. (more on this in another post)
- Natural supplement for adrenal gland support. I know that "Adrenal gland fatigue" is not supported in western science, but this supplement REALLY helps me. I had testing done by the naturopath too see where I needed support in the day.
- Hydroxyzine: this is a prescription strength anti-histamine. If I have eaten something Im allergic too, I take this. It also has a bonus of making me sleep. It's a win win! I do not take this daily, but some people do.
- Drinking lots of water
- Having healthy bladder habits (avoiding urinating just in case, or holding too long etc)
- Regular sleep patterns
- Exercise everyday (even just a dog walk counts!)
Spiritual and emotional side:
- I gave up my religion. You might think..whoa! what does that have to do with your bladder health? Since I have such severe PFD, and it is so closely related to my emotional state, I needed to do whatever I could to ease my anxiety and emotional state. This meant that I discovered whole new philosophies that align more naturally with how I view the world. I am SO incredibly happy and at peace with this change in my life. (again another post necessary about what I do believe in now... hint: YOGA)
- I went to see the psychologist. Understanding our thought patterns and what drives us helps to break up negative thoughts and processes. I highly recommend CBT (Cognitive Behavioral Therapy) it dramatically increased my quality of life.
- I took a chronic pain management course, where I learned about the pain system, management techniques and about the emotional toll of chronic pain. My psychologist actually has a webinar that is essentially the same course here: https://www.pipain.com
- I took up yoga and am continuing to learn about the 8 limbed path. It brought such healing to my life that I decided to become a teacher and share it with as many people as possible.
This is just a list of what I find effective for me, at this time. I tried many other things that were not effective, but with this condition it is a trial and error process. I will probably make more blog posts going into details about my spiritual and emotional changes, as they are detailed subjects that I don't have time for here.