The Beginning: My Story of IC
My story of IC begins in the fall of 2004 when I was engaged in very normal life happenings: an engagement to the love of my life; a promotion to a great sales job at a global IT company; working towards my goal of completing my second college degree. I felt that I was on the cusp of something bigger than myself and that I could obtain any goal within my grasp but did not understand the connection between how scars left over from my past, an unhealthy diet, and stress compounded by stress could only last for so long before something would give. Ignoring major red flags within my physical body such as kidney stones, chronic yeast and bacterial infections, severe headaches and many, many years of pent up anger, I pushed forward with my very hectic schedule. Half-heartedly I would swallow a few acidophilis pills whenever the yeast infections became unbearable or I would try to eat one less than the entire bagful of cookies. I was not going to let anything slow me down from my life goals. Or so I thought.
During Christmas of the same year, the vaginal discharge became even more noticeable and I had a slight 'ache' in my vagina and I began to notice that I needed to urinate more than was normal for me. Ignoring the symptoms I vowed to enjoy our Christmas vacation with some relatives in Taos, never holding back from enjoying a Christmas sweet or alcoholic beverage. The morning after Christmas we were awakened to hear that there had been a devastating tsunami in Sri Lanka and the images of beautiful people clinging to trees and pieces of swept away buildings haunted me. As I watched the images the ache in my vagina grew more incessant and I remember thinking that life would never feel the same again and the world felt as if it had grown suddenly very dark.
As 2004 turned into 2005, the vaginal sensations and slight pain turned into an all encompassing and horrific vaginal pain which lasted twenty four hours a day. Whenever my bladder filled with urine it seemed as if along with the urine my bladder was filling up with tiny shards of glass. Never in my soul had I imagined that obscure organs could contain such pain! I searched the Internet hoping to find answers to what, I imagined, was a temporary health set back. To comfort the fears welling up inside me along with the bladder and vagina pain I grabbed on to other seemingly less horrific diagnoses: kidney stones, endometriosis, chronic bladder infection, appendicitis. An eery and hard to pronounce name kept popping up in my search with symptoms that exactly matched my own: Interstitial Cystitis. Along with the unfamiliar name came the even more difficult definition: 'Interstitial Cystitis, or IC, is a chronic, incurable disease characterized by severe pain in the bladder and surrounding organs.' The word incurable slid into my chest with a grey tinged thud.
By the spring of IC I had all of what would now be considered the normal series of tests in order to rule out all other diseases and ailments in order to determine that yes, I did have IC, because even in 2005 IC was a disease only diagnosed by excluding out all possibilities. So I passed three kidney stones at home (without pain medication) and had countless blood tests, urine cultures, an IVP, an ultrasound and a cystoscopy (without Lidocaine!) and was bounced around two of the cities most known urologists. My diagnosis was never completely a 100% done deal at the end of all of these tests and doctors visits but I was told that it was 99% likely given my pain and symptoms and the test results (all negative) that I had IC. I was given prescriptions for pain medications, antidepressants, and referred to a psychologist in order to learn 'how to live with a painful incurable disease'. The urologist told me to visit his office the following week in order to have a potassium sensitivity test done in his office in order to 'prove' that I had IC. These same 'tests' would also be the only pain relief the doctor could provide me even though I had read about the potassium test and the amount of positive results in relation to the percentage of IC patients who had negative test results. My research had told me that the test (and often for a long time afterwards) was normally incredibly painful for IC patients. Upset by a diagnosis of an incurable disease with 'treatments' with only a tiny hope of masking the pain and symptoms I was determined that very day to find a different way. Seeking another way with IC I chose another path and dove headlong into intensive research which lead me from herbals, to TCM, to experimental treatments, to even more blood work and tests.
This path took me five years and utilizing the expertise, knowledge and care of countless doctors, nurses and holistic health care practitioners. I utilized counseling, acupuncture, herbs and the very strict IC diet. It was not the 'easy' route and I often questioned my own efforts as the days turned into years sometimes with little to no results. Finally, after two years of very hard work, I began to notice some of my pain and symptoms had disappeared. I continued on the same path of utilizing both Western and holistic modalities and doctors until I reached where I am at today. Some would call it remission. Others would say that I did not 'really' have IC since it is incurable and so, therefore, I should not be better. Call it what you will but I am a changed person for enduring years of excruciating bladder and vaginal pain (along with vulvodynia, dyspereunia, food and chemical allergies, and severe headaches) to know that I will never be the same person. I long to help others living with IC and related pain conditions, through this website and by providing a place where they can send me private messages and questions about ICPBS to someone who has lived through it. I am a passionate advocate and my highest intention is to spread awareness about ICPBS and to provide the latest research and treatment results with anyone who finds this website and blog. Thank you for letting me share the first part of my IC story with you. The story does not end at my recovery. It is merely the beginning of a new path in my life.
During Christmas of the same year, the vaginal discharge became even more noticeable and I had a slight 'ache' in my vagina and I began to notice that I needed to urinate more than was normal for me. Ignoring the symptoms I vowed to enjoy our Christmas vacation with some relatives in Taos, never holding back from enjoying a Christmas sweet or alcoholic beverage. The morning after Christmas we were awakened to hear that there had been a devastating tsunami in Sri Lanka and the images of beautiful people clinging to trees and pieces of swept away buildings haunted me. As I watched the images the ache in my vagina grew more incessant and I remember thinking that life would never feel the same again and the world felt as if it had grown suddenly very dark.
As 2004 turned into 2005, the vaginal sensations and slight pain turned into an all encompassing and horrific vaginal pain which lasted twenty four hours a day. Whenever my bladder filled with urine it seemed as if along with the urine my bladder was filling up with tiny shards of glass. Never in my soul had I imagined that obscure organs could contain such pain! I searched the Internet hoping to find answers to what, I imagined, was a temporary health set back. To comfort the fears welling up inside me along with the bladder and vagina pain I grabbed on to other seemingly less horrific diagnoses: kidney stones, endometriosis, chronic bladder infection, appendicitis. An eery and hard to pronounce name kept popping up in my search with symptoms that exactly matched my own: Interstitial Cystitis. Along with the unfamiliar name came the even more difficult definition: 'Interstitial Cystitis, or IC, is a chronic, incurable disease characterized by severe pain in the bladder and surrounding organs.' The word incurable slid into my chest with a grey tinged thud.
By the spring of IC I had all of what would now be considered the normal series of tests in order to rule out all other diseases and ailments in order to determine that yes, I did have IC, because even in 2005 IC was a disease only diagnosed by excluding out all possibilities. So I passed three kidney stones at home (without pain medication) and had countless blood tests, urine cultures, an IVP, an ultrasound and a cystoscopy (without Lidocaine!) and was bounced around two of the cities most known urologists. My diagnosis was never completely a 100% done deal at the end of all of these tests and doctors visits but I was told that it was 99% likely given my pain and symptoms and the test results (all negative) that I had IC. I was given prescriptions for pain medications, antidepressants, and referred to a psychologist in order to learn 'how to live with a painful incurable disease'. The urologist told me to visit his office the following week in order to have a potassium sensitivity test done in his office in order to 'prove' that I had IC. These same 'tests' would also be the only pain relief the doctor could provide me even though I had read about the potassium test and the amount of positive results in relation to the percentage of IC patients who had negative test results. My research had told me that the test (and often for a long time afterwards) was normally incredibly painful for IC patients. Upset by a diagnosis of an incurable disease with 'treatments' with only a tiny hope of masking the pain and symptoms I was determined that very day to find a different way. Seeking another way with IC I chose another path and dove headlong into intensive research which lead me from herbals, to TCM, to experimental treatments, to even more blood work and tests.
This path took me five years and utilizing the expertise, knowledge and care of countless doctors, nurses and holistic health care practitioners. I utilized counseling, acupuncture, herbs and the very strict IC diet. It was not the 'easy' route and I often questioned my own efforts as the days turned into years sometimes with little to no results. Finally, after two years of very hard work, I began to notice some of my pain and symptoms had disappeared. I continued on the same path of utilizing both Western and holistic modalities and doctors until I reached where I am at today. Some would call it remission. Others would say that I did not 'really' have IC since it is incurable and so, therefore, I should not be better. Call it what you will but I am a changed person for enduring years of excruciating bladder and vaginal pain (along with vulvodynia, dyspereunia, food and chemical allergies, and severe headaches) to know that I will never be the same person. I long to help others living with IC and related pain conditions, through this website and by providing a place where they can send me private messages and questions about ICPBS to someone who has lived through it. I am a passionate advocate and my highest intention is to spread awareness about ICPBS and to provide the latest research and treatment results with anyone who finds this website and blog. Thank you for letting me share the first part of my IC story with you. The story does not end at my recovery. It is merely the beginning of a new path in my life.
