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Patient Stories - Tina (IC/Vulvadynia)

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I am Tina Dodd, Board Member and Patient Advocate for P.U.R.E. H.O.P.E., and I would like to share my personal journey through this condition called “Interstitial Cystitis”. It has been a long, hard, and sometimes very painful journey, but I have learned a lot through the years. Because of those experiences, I have taken control and learned how to manage my condition, while living my life to the fullest everyday.

I was born in Germany in the early 50’s, so you can image back then Doctors’ had no idea what was wrong with me, at the young age of 3,when I would not go to the bathroom because it would cause me to have a horrible burning pain. After an exam, Doctors would tell my Mother the same thing about me that they told her I had a urinary tract infection. With that diagnoses, they would give me antibiotics and with that the cycle began.

From then on, I suffered with pain and related symptoms like: urinary frequency, burning during and or after voiding, pain in the bladder, pain in the urethra, chromic fatigue, lower back pain, migraine headaches and vulvadynia. Through the years, I was sent from one Doctor to another, being misdiagnosed and all that time thinking I am going crazy! One of the urologists’ did tell me “There was nothing he could do for me, but to send me to a psychiatrist because this was all in my head.” At that time I didn’t have the support of my husband, and he believed the doctors, which caused me even more stress. After my divorce, I did go to counseling for a while, but that did not really help me, they just put me on drugs that made me sleep. That was no way to live. So, after years of searching I did find an aggressive urologist who was researching a condition called IC. That is when I had a Cystoscopy with a Hydro distention and was finally diagnosed with having IC. You don’t know what a relief it was to find out I was not crazy after all!!

I then began a series of instillations, physical therapy, and Elmiron for almost two years. That treatment plan was very beneficial and put me in remission for several years. Since then, I’ve learned what type of diet works for me and I stick to it, if not I pay for it later in a flare-up. I do stay away from caffeinated drinks, foods high in acid, spicy foods, and try to limit my stress level. (That is the tough one!!!) Occasionally I do have to take meds for pain management and acid blockers. I have found MSM Powder (methyl-sulfonyl-methane) and Aloe Vera capsules to be very beneficial in controlling my burning pain.

There are many medications and diets available that help with the symptoms; you just have to find the one that works for you as a long-term cure has yet to be developed. There is research being done and hopefully a cure in the near future.

If there is anything you take away from my story, it should be “never give up searching for the right team of Doctors for you” It does take a team of Doctors to put together the right treatment plan.

 


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All information on the P.U.R.E. H.O.P.E. Web site is provided with the understanding that the P.U.R.E. H.O.P.E. does not engage in the practice of medicine.  The members of P.U.R.E. H.O.P.E. cannot and do not give medical advice.  No information on this Web site should be considered medical advice.  Only your personal physician can do this for you.

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