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Taylor’s Story (Interstitial Cystitis)

Taylor's Story (Interstitial Cystitis)Life is a Journey

I want to be an actor. I want to grow and learn. I want to hit the stage, the screen and make a difference in the world. I want to create. I want to imagine. I want to dream.

In September of 2012 I moved to New York. I had recently finished the summer conservatory at Michael Howard Studios and was accepted to continue my studies in the one year conservatory. I couldn’t wait to begin my studies and work with amazing teachers and classmates who would become like family.

October – December 2012. Starting in the month of October I began feeling under the weather. I assumed I was just homesick but my friends in New York were concerned it was something more. By November I was suffering from stomach ailments, hot flashes, dizzy spells, and weight gain. The week of Thanksgiving when I came home to Oklahoma it was a blessing. It was the time where I could reconnect with my family and friends, rest, and recover from my reoccurring health problems. My family could tell that I was not at my best health but agreed it was most likely homesickness and maybe a little virus on top of it. The night before I was suppose to fly back to New York I awoke overcome with severe pain on my right side. I knew instantly I was passing a kidney stone, I had passed kidney stones before (never an experience you get use to). The following day I went to the family doctor, and I received antibiotics to insure that the passing of the kidney stone would not cause an infection.

One week later after finishing the antibiotics I was set to head back to New York. The night before my flight I still felt under the weather but assumed it was only side effects from the antibiotics. I was laying in bed restless when my alarm went off at 5 am. I turned it off and reached up towards the ceiling fan to turn on the light. When I reached I felt a striking pain on my right side that took my breath away. I instantly curled up into the fetal position while holding onto my right side gasping for air and trying not to vomit. My parents rushed me to my family doctor who checked/tested my blood and urine as well as sent me for a CT scan. The scan showed that I had an ovarian cyst on my right ovary that had ruptured. Ovarian cysts start during the normal function of a menstrual cycle, when they are functioning correctly they are defined as follicles. Follicles produce the hormones estrogen and progesterone and release an egg. My cyst was thought to be caused by the malfunction of a follicle during menstruation. To treat the rupture I was given antibiotics to prevent infection. By the time December came around and I was still feeling ill. I took the antibiotics and I continued to see my family doctor but nothing  helped. One evening a couple days following Christmas I began to have severe pain in my abdomen and pelvic region so my parents rushed me to the Emergency Room. At the ER my blood and urine were tested for infections and I had a gynecological exam. Nothing seemed to be wrong, though the doctor could see I was suffering. The doctor gave me pain medication before deciding I would need to be tested by two types of ultrasounds: the normal one with the gel on the belly and then the trans-vaginal one. Both ultrasounds showed nothing abnormal. The ER doctor was very disappointed by the results or lack of results. He decided to make me an appointment at The Menopause Center. At my first appointment at The Menopause Center I was diagnosed with an infection of the uterus. I was placed on yet another week of antibiotics. The antibiotics caused no relief of the abdominal and pelvic pain. At The Menopause Center I was then sent to see their main specialist Dr. Noel Williams. Dr. Williams examined me and decided he wanted to perform a laparascopy surgery. The following day I was prepped for surgery.

January 9, 2013. I had my first laparascopy surgery performed by Dr. Noel Williams. In surgery Dr. Williams removed an ovarian cyst that was hiding behind my right ovary, removed fluid which had lingered in my body from the ovarian cyst rupture in December, and he removed endometriosis on my uterus and ovaries. Endometriosis is a disorder in which the tissue that normally lines the inside of the uterus the endo grows outside the uterus. It thickens, breaks down, and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit the body it becomes trapped and eventually develops into scar tissue. I was very happy that the surgery went well and I was on the path to recovering. I was placed on bed rest for a couple of weeks during which I developed several infections. I was placed on more antibiotics and further bed rest alongside pain medication (which I have discovered my body does not react well to any form of strong pain medications). I was also placed on a hormone medication called progesterone to help prevent further development of ovarian cysts and endometriosis.

February 2013-June 2013. February came around and I was feeling strong enough to head back to New York to continue my studies in the one year conservatory. My mom came with me on the trip to New York and spent several weeks with me to make sure my health was stable. My immune system had been weakened and my bodies defenses were down which led me to be more accessible to infections and viruses. Due to my weakened immune system I received shingles on the top of my forehead. Shingles is a painful, blistering skin rash due to the virus that causes chickenpox. I was placed on anti-inflammatory medication and the rashes cleared up in a couple of weeks. My mom went back home to Oklahoma and I moved into a new apartment in Chelsea close to the location of the Michael Howard Studio. In February and March I was struggling to regain my strength. I constantly felt physically and emotionally exhausted. In late March I began to have abdominal and pelvic pain, one day it became so severe that the manager of the studio took me to the Emergency Room. We were there for over six hour getting blood and urine was tested, gynecological exam, and regular ultrasound and trans-vaginal ultrasound. I was diagnosed with yet another ovarian cyst rupture. I was placed on, you guessed it, antibiotics and I began taking birth control in hopes it would be able to stop the growth of these ovarian cysts. In April-June I started becoming extremely introverted. I was suffering from major mood swings, insomnia, and my physical, mental, and emotional capacities were at a breaking point, and I was still continuing to have abdominal and pelvic pain. However, instead of acknowledging my ailments I pushed forward through the pain. I was committed to finish the conservatory, and my classmates and I were in rehearsals for two productions – one being the play The Matchmaker and the second being our showcase. The first year conservatory finished within the second week in June. Once finished I flew back to Oklahoma and had an appointment at The Menopause Center. Dr. Williams was very concerned about my health. In two weeks we prepped for my second laparascopy surgery.

July 3, 2013. I had my second laparacopy surgery performed by Dr. Noel Williams. In surgery Dr. Williams found I was suffering from appendicitis and further endometriosis, both which he removed. After several post surgery checkup appointments with Dr. Williams, he and I decided it would be best if I be treated with four Lupron shots, one shot every three months. The shots would stop my menstrual cycles for five years, also putting a stop to developing further endometriosis and ovarian cysts.

August of 2013. At the end of August I received my first Lupron shot. The shot has side effects such as hot flashes and nights sweats but were a small cost compared to the pain of endometriosis and ovarian cysts. But the abdominal and pelvic pain continued. Dr. Williams concerned with continuing pain sent me to see urologist Dr. Shea Samara.

September of 2013. I met with Dr. Samara and we discussed my symptoms. I was diagnosed with Intersitial Cytisis (IC). IC is a chronic inflammation of the bladder that causes chronic pain and discomfort. The inflammation associated with IC causes the lining of the bladder wall to scar and the bladder to stiffen, which effects the way the bladder expands – pinpoint spots in the lining of the wall will begin to bleed and allows harmful substances in the urine to come into contact with the bladder wall. Doctors do not yet know what causes IC . IC has much of the same side effects of a bladder infection but cannot be treated with antibiotics. A medication which helps rebuild the bladder wall and relieves symptoms (which doctors do not know why) is called Elmiron, I know it sounds like a name used in Lord of the Rings. It takes several months of taking the medication by capsules (four daily) before feeling any relief. The medication could be jump started in the body and begin to work faster if treated directly into the bladder through a catheter. Dr. Samara and I agreed that I should undergo six catheter treatments. Each treatment caused me a lot of pain and made me very ill. My blood pressure would drop causing me to feel faint and my body temperature would rise where I would need to be fanned and wiped with cold water on my face and neck. The catheter burned and my whole pelvic region ached. The third of my treatments was the worst. I was being treated normally with the catheter but my bladder began spasming and rejecting the medication. I will never forget having to have my lower body be wrapped in paper towels because my bladder was unable to hold liquid, it was one of the most embarrassing and scary time in my life. My bladder thankfully did not spasm for the last of the treatments and I learned tips that helped with the treatments. Tips included before receiving treatment take two Advil liquid gels and hour before treatment and eat a good amount of protein. Following treatment drink as much water as possible and take the medication AZO which relieves pelvic pain. Once I finished the treatments I began taking the capsules daily and I began the IC diet. The IC diet provides information on foods to avoid that cause bladder irritation. I began feeling stronger and healthier every day.

October of 2013. At the beginning of October I decided to head back to New York and continue my studies in the second year conservatory at Michael Howard Studios. One week in New York I came to realize I have not yet fully recovered from the trauma of this past year. When I was home I was recovering. I was gaining strength. In New York I am struggling because I am pushing myself to do more than I am ready to do because, just as I had done last year and as I have done throughout my whole life. I push myself because I fear I will be left behind, afraid to miss opportunities.

My greatest passion is my acting, my will to create. If I am to keep this will I need to take time to heal. That is why I am leaving New York and taking time to heal at home in Oklahoma. I know I can get past this trauma with time and healing, this trauma wont take away the hopes and dreams I have now. It may delay my dreams, it may shake my hopes but I will come back with vengeance. I will come back with a flame in my heart, burning create. I will grieve for the time I have lost. I will be grateful for the wisdom I have received. And I will be thankful that life has not struck me as hard as so many others.

I want to share my story to help others who have had similar trials. Keep fighting for your dreams and know you are not alone.

Submitted 11/13/2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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