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After suffering for many years in my 30s and 40s with urologic and gastrointestinal issues (GI), I was diagnosed with having prostate cancer in my early 50s. Due to the many treatments I had for both the previous urological issues and then the prostate cancer, I developed debilitating chronic pain. The chronic pain I was experiencing absolutely destroyed my quality of life, and it was extremely challenging to make it through a workday and/or enjoy any downtime at home. Due to the intensity of the pain, I always sat on a cushioned donut and was often forced to lie on the floor at work when the pain became too severe.
As a result of the pain I was experiencing, I was referred to a pain management specialist that performed several nerve blocks in the pelvic area, as other recommended treatments did nothing to decrease my pain level. A few other physicians considered to be specialists in their field could not reach a consensus on the cause of the pain in my pelvic region. I continued doing aquatic therapy and pelvic floor therapy, but any prolonged sitting or driving in my car for medical appointments 100 miles away would trigger unbearable pain. Most of the care for my medical concerns was located far from my home because of the complicated nature of the issues I faced.
As an Administrator for my employer, I knew about the services that ConnectCare3 provides, but never thought that I would need to use this benefit since I have many immediate family members in the medical field, both doctors and nurses. The ConnectCare3 benefit provides nurse navigation and patient advocacy. Out of desperation, I decided to contact ConnectCare3. After several weeks of working with the kind, compassionate, and knowledgeable nurse navigator assigned to my case, it was obvious to me that she was the medical professional I needed to assist me in finding the most qualified doctors/surgeons for my very complicated case. From our first telephone conversation, my nurse navigator listened intently as I tried to summarize a very complex health history so she could begin researching doctors that would be best for my case.
During review of my medical records that I provided to her, the ConnectCare3 nurse navigator noted that I had been diagnosed with Pudendal Neuralgia and a partial torn tendon of the ischial tuberosity located on the same left side of my body. Through my nurse navigator, I learned that Pudendal Neuralgia is a type of chronic pelvic pain that originates from damage or irritation of the pudendal nerve. This condition is characterized by burning, stabbing pain in the territory of the pudendal nerve, which has a vast distribution in the pelvis. I was shocked when my nurse navigator relayed this finding to me, as I was completely unaware this diagnosis existed in my medical records. It apparently had been overshadowed by all the other medical conditions in my pelvic region, and my GI and colorectal physicians apparently were not aware of the diagnosis.
After receiving pudendal nerve block procedures over a six-month period, my ConnectCare3 nurse researched experts in treating Pudendal Neuralgia and identified a surgeon who performs microsurgery for this condition in New Jersey. After meeting with his understudy physician, I felt a ray of hope for the first time in a very long time! His knowledge of my condition was beyond impressive, and after two specialized tests to confirm his suspicions, I met with the physician identified by my nurse navigator and scheduled a date for surgery.
During the surgery, it was noted that my surgeon found a vein wrapped around the pudendal nerve. I was also informed that an extensive amount of scar tissue was removed from the left side of the pudendal nerve. Since the pudendal nerve surgery, every week I notice various signs that assure me the surgery was successful. The surgeon told me to expect a 6-to-9-month recovery period, and to allow time to properly heal. As part of my healing process, he suggested that I walk frequently and begin pelvic floor and aquatic therapy with the caveat to be gentle. Recently, I have stopped using a donut to sit on and the intensity of the pain has decreased significantly.
After suffering for almost a two-year period with Pudendal Neuralgia, I will always be grateful to the ConnectCare3 nurse navigator who listened to me, uncovered my Pudendal Neuralgia diagnosis as the cause of the chronic pain, and continued the research on my behalf that led me to such an outstanding and knowledgeable surgeon. I felt like I had run out of options when I contacted ConnectCare3, and I recall the days when I was bedridden with pelvic pain and cringe to think I could still be living with that pain if it wasn’t for her diligent and persistent research. Looking back in time, I am elated that I decided to reach out to ConnectCare3 for nurse navigation and patient advocacy services!