NOTE: The following was written before I had life-changing surgery on November 13, 2012 to implant an intrathecal pain pump for the management of severe chronic pain. Since then, I have been back in the mainstream of life, enjoying every minute and adventure as it comes…!!!
I was a happy, healthy, active woman when the first symptoms of this nightmare called interstitial cystitis (IC) and pudendal nerve entrapment (PNE) began. I felt a sharp burning sensation in a part of my anatomy I never thought I would be writing about publicly, and assumed it would disappear as quickly as it appeared. That strategy didn’t last long. Soon I was making the round of doctors, shocked that none of them had a clue of what was wrong with me. Finally an gynecologist announced that I had “urethral syndrome” and set me up for a procedure where the delicate tube going to my bladder was stretched with graduated sizes of metal rods. Life as I knew it was over, and a new life of pain and indignity had begun.
Over the next few years, I would endure other insults to my body, still with no diagnosis. In a desperate late night search, I found Dr. Lowell Parsons, a noted IC specialist and research scientist who helped develop Elmiron, the first medication approved by the FDA for IC. Dr. Parsons was excited about a new diagnostic tool he had developed for IC – the postassium sensitivity test. Soon I was on the table with a nurse prepping me for the instillation. Owwwww!!! (Hmmmm, let’s see what happens when we fill an angry, inflamed bladder with a strong irritant…. As you can imagine, I hit the ceiling, and we had our diagnosis!)
The only problem was, the initial knife pain signal in the left side of my pelvis was still there. It felt like I’d been stuck with a knife. Every time I asked a doctor about it I was told it was “referred pain” from my bladder… Ha! That “referred pain” ended up hurting a lot more than my bladder symptoms. It intensified and spread to my left buttock as well, sometimes running down my leg so that walking became difficult. Once again I began scouring the internet for clues, and I found out about pudendal neuralgia and pudendal nerve entrapment.
– I suffer from interstitial cystitis and pudendal nerve entrapment;
– The first symptoms showed up over 20 years ago and slowly progressed;
– I was a patient at a local pain clinic for over 13 years, receiving pain medication to dull my symptoms.
– I slept as much as possible to avoid the pain.
– I have had two hydrodistentions under general anesthesia, in which the bladder is distended with water until the lining cracks and bleeds. I have had bladder instillations of DMSO, heparin and lidocaine.
– I have had two failed PNE surgeries with two of the highest regarded surgeons in the field
– Before surgery, I tried acupuncture, meditation, physical therapy, relaxation therapy and meditation, neurofeedback, trigger point injections, nerve blocks and botox
– Have been on SSDI disability for several years
– I use ice packs, ice bags and my heating pad
– I cannot sit. I cannot walk without terrible pain.
– I use a reclining wheelchair to go to doctor appointments.
– I had a great career as a writer, musician, creative director of ad agency, journalist
NOTE: Now that I have had my intrathecal pain pump (which I named “Gertrude”) since November of 2012, my life has totally changed!
– I’m getting my groove back and enjoying life again! (Take that, you nasty, nasty pelvic pain monster!)