I’m Amanda and I have interstitial cystitis. I wanted to log my journey through the healing process of this disease. Like any chronic disease I have good days and bad days. Thankfully more good days than bad days lately! I can attest that to my wonderful treatment team of several positive women who are all working together to make me well.
Interstitial Cystitis is a disease of the bladder and is a co-disease with pelvic floor dysfunction, endometriosis, IBS, migraines, vulvodynia, and several other chronic diseases. What happens with IC is that the bladder wall has “sores” or “leaky” spots within it. And much like a sore on your skin something like lemon juice or vinegar stings when it hits the sore. Therefore one of the first line treatments f
or IC is a huge diet change. Nothing with caffeine, acid, soy, or histamine producing like chocolate.
Another school of thought is that mast cells in the bladder release histamine in the bladder. Many patients are placed on many different medications to reduce histamines such as zantac, atarax, and zyrtec. There is also a chronic pain component to IC or pelvic floor dysfunction which can be treated with elavil, a tricyclic antidepressant. If something has gotten through to irritate the bladder, or not, it’s called a “flare” and needs to be treated. Often patients are given pyridium to help coat the bladder during this time. There are many other medications that are used with or instead of these medications.
In addition to all the medication to those mentioned above I also take topamax for my migraines and trazodone for sleep. My neurologist is also included in my treatment team. And his thoughts and ideas are taken into account when talking about my bladder. I also have a urologist, gyn, physical therapist, acupunctorist, therapist, and perhaps soon a nutritionist. To beat IC it takes a village! Once a week I go to physical therapy and acupuncture. Once every two months I go to pelvic medicine clinic where I see my gyn, urologist, and pt. But almost every week I’m discussed at pelvic medicine rounds. So I’m not lost in the shuffle. I went a year with a urogyn who I never saw and I felt lost and disconnected and not treated. Now I feel supported and able to heal.