I just had to stop my college career; I'm exhausted.
Posted: Tue Nov 29, 2011 9:16 pm
Hello everyone, my name is Emily. I've been struggling with pudendal neuralgia for four years, and was initially debilitated at fourteen years of age. It must seem fictitious that a young girl was diagnosed with something such as this, and I can't blame you: my doctors can barely believe it either. I'm the youngest patient most have ever seen. Specifically, I have been diagnosed with a bilateral periformis syndrome effecting the pudendal, obduratus, and sciatic nerves, in addition to endometriosis that has spread to my lumbosacral plexus. (A mouthful, to be sure!)
I used to be a very competitive sailor, in addition to a long distance runner and skier among many other sports. I crewed in 420s for three years following the onset of my pain. Last August, I was accepted to compete in worlds one morning, only to be taken off the water at nationals later that same and put in a wheelchair for a week; it was far too painful for me to walk. Since then my sailing career has ended for good, and it took a year before I could even manage going up a set of stairs again. Needless to say, it was a very dramatic change to devolve from a rising world-class athlete to not being able to get out of bed some days. I knew the risk I was taking in continuing sailing despite the pudendal pain over three years, but it seemed so inconceivable to me that as a high school girl I had to give up my passions to adopt a sedentary lifestyle. It also seemed absurd to me that instead of wondering who my date to prom was or if I could get a 5 on my APs, I had struggle with the possibility of my never having children and wondering if I could even ever have intercourse (let alone explaining to a prospective boyfriend that I had explosive vaginal pain...the definition of awkward first date, let me tell you).
Though it was a struggle during my junior and senior years of high school, I came to terms with loosing the lifestyle of sailing and general athleticism by focusing my energy on school, and my dreams of pursuing an MD-PHD in peripheral neurosurgery, or perhaps cognitive neuroscience (I am still debating between the two). I still struggle with the iniquity of the loss of sailing at such a young age, but I applied the theory that when one door closes, another opens, and I convinced myself that my new door was academia, as well as the fabulous social scene of college. I was accepted to the College of Charleston, which I fell deeply in love with during my freshman year- for me, it truly was like dream college, with proximity to the water, great jumpstart to med. school, and an wildly fun social scene. (go cougars)
Several months passed at CofC, however, and though I had spent a summer in health and mobility such as I had never experienced since 8th grade, my pain returned tenfold in the middle of the semester. Even if I had a friend drive me to my classes and I sat on a pillow, I could barely sit though the class, let alone perform at the level necessary for an Honors student. Standing through my two three hour labs soon became an impossibility, which is pathetic for an eighteen year old girl who looked entirely healthy and in good shape. I had to take the semester off and home, where I am pursuing a diagnosis or treatment with a team of 5+ doctors, and I am currently unsure of whether returning to CofC will be in the cards for the coming spring semester.
Needless to say, I am struggling incredibly with this turn of events. At eighteen, I have already had my active lifestyle taken from me, and I now found it almost entirely impossible to attend college, not even to mention my fading social life and the stress this has put upon my family and friends. I have had over five major surgeries in the past four years across the country, been put on menopause via Lupron for a year at 16 (the advice of an OBGYN for endomtriosis), am currently functioning with a suppressed immune system via Enbrel, in addition to many other extreme medical actions. It sounds dramatic, and I am not usually one to dwell on the sorrow of the situation, but I truly need some advice on how to come to terms with this turn of events effecting my life. As much as every teenager pretends to play the know-it-all sage, the truth is I would still be trying to figure out life and how to handle adulthood if i were perfectly healthy girl; how can I figure out a way to live with constrictions such as these?
Thank you for your willingness to share your wisdom, I cannot begin to express how much it will help.
Best wishes, Emily =)
I used to be a very competitive sailor, in addition to a long distance runner and skier among many other sports. I crewed in 420s for three years following the onset of my pain. Last August, I was accepted to compete in worlds one morning, only to be taken off the water at nationals later that same and put in a wheelchair for a week; it was far too painful for me to walk. Since then my sailing career has ended for good, and it took a year before I could even manage going up a set of stairs again. Needless to say, it was a very dramatic change to devolve from a rising world-class athlete to not being able to get out of bed some days. I knew the risk I was taking in continuing sailing despite the pudendal pain over three years, but it seemed so inconceivable to me that as a high school girl I had to give up my passions to adopt a sedentary lifestyle. It also seemed absurd to me that instead of wondering who my date to prom was or if I could get a 5 on my APs, I had struggle with the possibility of my never having children and wondering if I could even ever have intercourse (let alone explaining to a prospective boyfriend that I had explosive vaginal pain...the definition of awkward first date, let me tell you).
Though it was a struggle during my junior and senior years of high school, I came to terms with loosing the lifestyle of sailing and general athleticism by focusing my energy on school, and my dreams of pursuing an MD-PHD in peripheral neurosurgery, or perhaps cognitive neuroscience (I am still debating between the two). I still struggle with the iniquity of the loss of sailing at such a young age, but I applied the theory that when one door closes, another opens, and I convinced myself that my new door was academia, as well as the fabulous social scene of college. I was accepted to the College of Charleston, which I fell deeply in love with during my freshman year- for me, it truly was like dream college, with proximity to the water, great jumpstart to med. school, and an wildly fun social scene. (go cougars)
Several months passed at CofC, however, and though I had spent a summer in health and mobility such as I had never experienced since 8th grade, my pain returned tenfold in the middle of the semester. Even if I had a friend drive me to my classes and I sat on a pillow, I could barely sit though the class, let alone perform at the level necessary for an Honors student. Standing through my two three hour labs soon became an impossibility, which is pathetic for an eighteen year old girl who looked entirely healthy and in good shape. I had to take the semester off and home, where I am pursuing a diagnosis or treatment with a team of 5+ doctors, and I am currently unsure of whether returning to CofC will be in the cards for the coming spring semester.
Needless to say, I am struggling incredibly with this turn of events. At eighteen, I have already had my active lifestyle taken from me, and I now found it almost entirely impossible to attend college, not even to mention my fading social life and the stress this has put upon my family and friends. I have had over five major surgeries in the past four years across the country, been put on menopause via Lupron for a year at 16 (the advice of an OBGYN for endomtriosis), am currently functioning with a suppressed immune system via Enbrel, in addition to many other extreme medical actions. It sounds dramatic, and I am not usually one to dwell on the sorrow of the situation, but I truly need some advice on how to come to terms with this turn of events effecting my life. As much as every teenager pretends to play the know-it-all sage, the truth is I would still be trying to figure out life and how to handle adulthood if i were perfectly healthy girl; how can I figure out a way to live with constrictions such as these?
Thank you for your willingness to share your wisdom, I cannot begin to express how much it will help.
Best wishes, Emily =)