I just got the long, long awaited diagnosis of Interstitial Cystitis, which is a very painful bladder disease.
I couldn’t be happier and more frustrated at the same time. I have been suffering for 15 years, telling my doctors something is wrong but never getting a good answer. My symptoms started in early pregnancy; with urgency, pain and pressure. I called my obstetrician, who ran a test for a urinary tract infection that was negative.
I kept insisting that I had an infection because of the symptoms. They kept checking, but an infection never showed up. Even after the pregnancy, the pain continued, so I went to my primary care doctor. Again, no infection was found. But I kept on insisting I had to have something because I was hurting.
The doctor ordered a clean urine sample, as I remember he called it. The nurse put a catheter in me to get the urine sample and I went through the roof in pain. On a scale of 1 to 10, it was a 20!
It was at that point that even she said that isn’t normal. I was happy, because now I would finally get some medicine to cure me, right? But when the urine results came back, I was devastated that they found no infection. Now what?
Off to a urologist, who ordered another urine screen using a catheter, which again caused severe pain. Nothing was found.
I went back to the gynecologist, begging for help, because now I had other symptoms; painful intercourse, slight tissue bleeding and specific areas of pain. This time I was diagnosed with Vulvular Vestibulitis. Finally, a diagnosis and treatment!
Not so fast. Yes, I did have the vestibulitis and began treatment, but the urethral pain and urgency didn’t go away.
Off to another urologist, who thought urethral dilation would help. But help what? What is wrong? The dilation was done, and it was only little better.
Then while Googling, I came to the conclusion that I had Interstitial Cystitis My symptoms fit the puzzle. I talked to my primary care doctor about it and he said, “Oh no, you don’t have that. That is really bad. You wouldn’t want that.”
My heart sank. I was thinking, of course I don’t want to have Interstitial Cystitis. But if I have it, I have it, and I have a right to know if I have it!
Nothing was done, so off I went once again, dismissed to keep looking on my own for help.
Through the years I have had catheters for other medical reasons and I have always panicked due to the extreme pain they caused. I would tell the doctors that something is wrong and I had to be sedated before having a catheter.
I had a surgery for the vulvular vestibulitis and went home with a catheter. I was assured I would not have pain. But I ended up being admitted to the hospital and getting shots of morphine due to the extreme pain the catheter was causing.
Even with that, still no answers. We moved from Michigan to Florida due to the poor economy. My husband, who is now in nursing school, found work as a surgical technician. Full time employment came with long awaited health insurance.
That led me to see a specialist. This time I was going to be firm and not let the doctor off the hook! The urologist thought it was a stricture in the urethra, so I had a dilation done. I woke up in a lot of pain and it continued. I went back to the doctor, who said the magic words, “I think you have a condition called I. C.”
It’s been about three years since my official diagnosis with Interstitial Cystitis. The pain of this disease is higher than a 10 on the pain scale. It’s been equated to end stage cancer pain by a Harvard study. I.C. sufferers have a high suicide rate.
I.C. comes with other medical conditions, which also cause chronic pain. I am in pain management and do not abuse my pain meds. If not for the medication I am taking, I would just be revolving through the ER for them to control my pain.
I have a reputable pain clinic and I am seen monthly for my scripts as well as tested for drug abuse, which I don’t mind one bit.
Many of us in the I.C. Community fear that someday we will not be able to get our much needed pain medications. We are one of many legitimate and desperate populations of patients who need our pain medications to not be interrupted or taken away. We must not punish those of us who desperately need these drugs for lifelong chronic pain.
Jackie Schneider lives in southwest Florida with her family.
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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.