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When My Gynecologist Gave Up on Finding My Interstitial Cystitis Diagnosis

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My name is Christy Keyes and I’m 39 years old. Interstitial cystitis (IC) showed up in my life at the age of 33 when I began experiencing symptoms of a bladder infection, but my culture results kept coming back negative. And this pain that kept coming back was unbearable. More importantly, the emotional trauma of no one believing me over and over again left a scar.

Let me back up. My husband and children have always believed me. But I was an emotional mess thinking of the burden I was putting them through. I wanted answers, but I needed to give my family some answers. Now I was a financial burden, the mom not at my kids’ important events, the wife being talked about, the absent partner in my marriage, and in my mind so many other things. Looking back on that time is hard.

The first dead-end was with my urologist. My visits were not revealing new answers or relief from this pain. Let me also mention that I bounced back and forth during this time from my urologist to my OB-GYN to my primary care physician, and this cycle continued for months. It was exhausting and expensive. The next dead-end hurt me much deeper than with my urologist.

Through the years I had come to love my gynecologist. So when he decided to give up on finding what was wrong with me, I was devastated. He had been my OB-GYN since I was in my early 20s and delivered both of my babies.

He thought the pain I was experiencing was coming from my uterus, after reading detailed notes I wrote daily along with the frequency of these pain episodes. He explained the reasons he felt the pain I was experiencing was due to my uterus and possibly endometriosis. And that I needed to have a partial hysterectomy, and at the same time he would look for signs of endometriosis. I scheduled the surgery immediately.

Surgery Day was here, but it had to be rescheduled. I had strange new symptoms that started that morning. My OB-GYN took me and my husband back to his office and told us to have a seat, then proceeded to tell me in front of my husband that he believed my new symptoms were from herpes. Now not only was I having to reschedule this surgery that was going to make all my pain go away, but I had to defend myself to my husband. I’m so blessed to have such a wonderful husband that he knew that was not true and never believed it even before the test results came back saying that I did not have herpes.

So I had a partial hysterectomy and my OB-GYN did not find any signs of endometriosis. One good thing from that surgery was the discovery that I did have adenomyosis once the test analysis came back on my uterus. But unfortunately the pain never went away, and it just kept coming back again and again and again.

So on the day of what I didn’t know at the time would be my last visit with him, he again had me join him in his office to talk. Then he looked at me and said, “Here, I want you to take these three overactive bladder drug samples home with you. There’s enough for six weeks. Take each one for two weeks, then call me and let me know which one helps.” That was all I could take emotionally, because now I was feeling that he thought I was either making this up or just seeking pain medication. A doctor I had come to trust and believe in chose to treat me this way. I still wish he would have said to me, “Christy, I’m sorry we have tried everything and I just do not know what is wrong with you.” That was the last time I ever saw him.

Finally through my primary care physician realizing and caring that at this point I needed real help, I had my first doctor’s appointment with an IC specialist. I was diagnosed with interstitial cystitis, vulvodynia and pelvic floor dysfunction. Although it took time, we found medications that helped me. I started following an IC diet, I began physical therapy and I continued to research IC on my own. Today, I’m doing so much better.

The best thing to come from this was connecting with other ICers. Just knowing I wasn’t alone, and certainly wasn’t making it up, has helped me the most. I found my true strength through IC.

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Lead photo source: Thinkstock Images

Originally published: March 20, 2016
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