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ICA Reassures Me that I’m Not Alone

My IC story began in April 2014. After having painful periods for years and awful results from every other type of hormonal birth control, I tried the Skyla IUD with the hope that it would work and end the excruciating ten-day long cycles I’d been having. I thought the insertion and weeks that followed were horribly painful. Unfortunately, this would be nothing compared to the months of chronic pain I was about to endure.

I was told my body would take some time to get used to the IUD and was prescribed mild pain medication in the meantime. By July the pain had gotten considerably worse – the ER nurses described what was going on with my uterus as labor pains – the uterus was trying to expel the device because it was too small to contain it. I would cramp up and scream every time I had to urinate. Desperate for relief, I had it removed and was certain my pelvic pain would be gone – I was wrong. My pelvic area, back and legs hurt so bad I thought I wouldn‘t be able to make it through work most days and would cry when nobody was around. I called the doctor’s office but they kept telling me to “use a hot water bottle and some ibuprofen.” As fellow sufferers of chronic pelvic pain so bad you can’t even stand up, I’m sure you all can relate to hearing the hot water bottle/ibuprofen suggestion and wanting to break the phone into a million tiny pieces. I was passed on to another doctor who said I probably had endometriosis, so I had a laparoscopy. Nothing was found, so I tried a pain clinic, but they rejected me.

Constantly searching the internet for answers, I came across the ICA website. There I realized I had all of the symptoms of Interstitial Cystitis. In September I saw a highly recommended urogynecologist, but he said I definitely did not have anything wrong with my bladder. We continued to go to the ER at least once a week for pain relief. I was passed from doctor to doctor at the practice, and was at the point where I couldn’t function anymore and had to go on sick leave from work. After some time, I finally agreed to try Lupron which got rid of the menstrual symptoms but not the pain. Then, when the prescribing doctor was not able to figure out what was wrong with me, she passed me on to yet another doctor at the practice. By November I was so sick of it all I decided to have a hysterectomy and bladder cystoscopy just in case. Even a chance that this could work gave my husband and I some hope.

The uterus was perfectly normal, and there were tiny tears in my bladder but nothing major. But the hysterectomy left me in even more agony. My oxycodone regimen was enough to knock a grown man to his feet. In the hospital, I cried and yelled until they took out my catheter as it was causing me a lot of extra pain. Urination on my own, however, was becoming increasingly painful and brought me to tears if I could even go – but there was never an infection. Lucky for me, this new doctor was not ready to completely rule out IC and he decided to try a bladder instillation at my post-op visit.

That bladder instillation changed my life forever! It worked – I felt free for the first time in months! I changed my diet. We added Uribel, Elmiron, Elavil, hydroxyzine and twice-weekly instillations. In addition, I started physical therapy. Just a couple of weeks later I was able to cut my pain medicine by half. It was like a weight had been lifted off of us.

I still am not anywhere near what I was like before this happened – I had to resign from a job that I loved at only 30 years of age, my daily routines depend on my amazing husband, and I can’t even drive – but we feel lucky to HAVE a diagnosis, medicines that actually help with the pain, and family and friends who love and support us. I’m extremely grateful for the ICA – it reassures me that I’m not alone. It is my hope that we can help more people understand how painful IC really is, and not to underestimate the amount of suffering we endure. I am now THANKFUL that all of those other doctors gave up on me, because Dr. Atkins was the one who listened and figured it out. A few weeks ago he asked me if I regretted having the hysterectomy – I told him I did not, because it took every other possibility away and made the IC stand out that much more, and I truly believe the IUD played a large part in triggering the IC – maybe I always had it, maybe I didn’t. But at least my story might help someone else on their path to recovery just like everyone else’s stories have helped me.

Vanessa Nebenfuhr