I’ve been having a lot of a-ha moments this week when it comes to my illness, personal values and life in general. I think I’ve come to the part of my journey where I’m teaching myself to be able to let go of the bad energy this pain has brought me. From what I’ve read and what I’ve been told by my healthcare team, my best chance of breaking this pain cycle is to calm down my nervous system. Since the pelvis is full of nerve endings, if pain is felt in my bladder, my muscles tense up and dysfunction, leading to irritated nerves and adding to the already painful IC/PBS symptoms. So I’ve taken on the challenge of learning to meditate to try to calm my nervous system… And in all honesty it is pretty amazing. This is definitely a key step in my journey and would recommend it to anyone, even if they are not going through an illness. You start to see and feel what really matters in your life. It’s been great to sort of reset myself and the values I want to live my life by. I do believe this illness is my body’s way of telling me to slow down and refocus. It’s unfortunate that it causes pain, but I like to see it as a sign.
I still have many more bad days than good days but I’m beginning to overcome the thought that this will never go away. Since being on facebook support groups, I read about women and men not finding a treatment that works, to the complete opposite, where some find something that works and they’re able to get back to their semi-normal lives. I’m currently trying to determine my ‘magic’ treatment plan that will be able to get me back to my life. One resource I found was about IC Subtypes and how each subtype needs a different treatment plan. Do you ever read other IC/PBS patient symptoms on message boards and realize you may not have the exact same symptoms but you are feeling bladder pain? That is where these subtypes come in to play. They can help treat the patient based on their subtype with more success than treating them all the same. There is tremendous diversity in IC/PBS sufferers. Some may get ridiculous urinary frequency with no pain, but others no frequency but pain during/after urination. Therefore treatment must be different for each patient.
- 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 personally feel that I am a combination of 3, 4, 5. I have a urologist and cystoscopy appt at the beginning of July and I really hope he is aware of this new IC/PBS guideline and subtypes so I can start on a more refined treatment plan rather than trying different things in hopes it will help relieve the pain.
What do you think your IC/PBS Subtype is?
PS: my last post spoke about building a day bed with my Dad, so below are a few photos from sketch to completion. 🙂 This was such a great project to do with my Dad. Being sick means I get to spend more quality time with loved ones. Nothing wrong with that!