- CASE FILE
For the past 25 years I've experienced bizarre symptoms that aren't consistent with my diagnoses. My symptoms are severe and life altering
ABOUT THIS CASE FILE
I have been a medical mystery for 25 years. My story is important to tell as my issues are female related and unfortunately not merely enough research or time has been devoted to women with similar stories as mine. Please allow me to take u on my life's journey. It has been filled with so many obstacles that most people, my age, have zero clue about. Despite all of my unique challenges I've persevered and have not let my physical health issues define me. Many women can relate to me soley for the fact that I'm a mom and in hopes that none of my symptoms are heredity. Please be ready to laugh and cry, with me, as you read on. My story begins in the summer of 1995. It was suppose to be such an exciting time for me considering that I was a new college graduate working at my very first job in social services. I began to feel like a had a urinary tract infection, despite numerous negative urine cultures. During the next 2 years I saw many urolagists and gynecologist before receiving the diagnosis of vulvadynia(as you continue to read my brave story please keep in mind that to this day many of my symptoms do not match up with any of my diagnososes) During this time I remained an active mom and my social work career was flourishing till BAM the following happened. I will forever be haunted by this day. It was the day before Thanksgiving 2003 and I was in the middle of my second pregnancy. I was employed as a social worker in the projects and remember being in the middle of walking to one of my client's apartments when I had the worst pelvic pressure ever. Finally, after a co worker called 911 and many tests and exams were preformed I got the awesome news that my baby was alright!!! Even though this was extremely good news I remember finding it difficult to smile during this time. You see no doctor could explain why I was experiencing horrible pelvic pressure that caused me to be bed bound for the second half of my pregnancy. After my baby was born I still didn't have answers and found some relief via various meds that were prescribed to me. I kept pursuing answers and then at age 32 I was diagnosed with interstitial cystitis,(aka painful bladder syndrome) despite a healthy looking bladder, which was examined using hydrodistention, under anaesthesia in the hospital. My symptoms did not always match up to women with the same illnesses. I responded minimally to numerous non invasive and invasive treatments(I can provide u with much detail if you desire) One treatment, that stands out in my mind, is the many years of cocktails of meds that my urolagist mixed and eventually had me do at home that went directly into my body using a catheter. These treatments are called "bladder installations" I'm very knowledgeable and well liked in the chronic illness community. In fact many women who are desperate for relief reach out to me. It makes me feel so good that I can help them, even if it's just a simple suggestion of using ice on their pelvic floor to get some relief. Please know that I'm talking about severe life altering pain. Personally, medical professionals have referred to my quality of life to someone with end stage cancer or on dialysis. During this time I had horrible vaginal pain and pressure that would flare and cause an increase of pain that would leave me bed bound for 1 to 7 days at a time. There was no rhyme or reason to my flares and I left many doctors confused. I began physical therapy for a new diagnosis of pelvic floor dysfunction. I also was given the diagnosis of fibromyalgia due to the fact that I had some arm pain. As you read on please understand that I think that doctors have missed the mark on this one too for me. You will see that things just don't add up to people with the same illbesses as mine. I'm left thinking that I might have something in addition or all together different than what I have been diagnosed with(possibly hormones play a role?) Life has a funny way of keeping things interesting. At the age of 40 I gave birth to my beautiful baby surprise. After 3 years of additional physical struggles I had a hysterectomy due to having severe endometriosis inside of my uterus. Despite having the surgery my symptoms were left unchanged. Then at age 43 I began to have additional odd and very painful symptoms. Some of these symptoms included severe hand pain, twitching of my thumbs, twitching of my left cheek when I smiled(I still can't smile normally),horrible sweating from my head, and insomnia. No explanation has been given, except the possibility that the severity of my fibromyalgia increased. As I stated before I'm really involved in the chronic illness community and some ofmy bizarre symptoms are unique. I want to thank you for taking the time to read my story. In the chronic illness community I'm referred to as a "spoonie" I would really appreciate your help and would love the opportunity to offer hope to fellow"spoonies"