My first encounter with pudendal neuralgia started when I was eighteen years old. I literally went from being voted the best athlete in my high school to being confined to my bed for years. I wouldn’t get a proper diagnosis until I met Dr. Stanley Antolak at the age of forty-three.
My downfall started with simple muscle pulls in my thighs. I played through the pain during football season of my senior year, but the continued pain caused me to miss the hockey and baseball seasons. I started doing traditional physical therapy but I never healed enough to return to sports. I was eventually taken to the Mayo Clinic in Rochester, Minnesota to see if they could diagnose why my legs were not healing fully. I received injections into the painful trigger points in my thighs but saw little to no improvement.
My parents then found me an osteopath who did manipulation and stretched my legs in an attempt to break down scar tissue in my muscles. This treatment started out very successful until one appointment opened the gates of hell into my life. In an attempt to stretch a muscle, the doctor had me lie on my stomach, place my knees together, and bend them to a ninety-degree angle. He then pulled my ankles apart in an attempt to stretch the muscles in the inner part of my thigh. The range of motion in my hips was not good, and as he continued pushing my ankles apart, I suddenly felt a sharp pain in the upper part of my left leg. This new intense, throbbing pain was unlike anything I had encountered before. After this new injury, the osteopath sent me to a neurologist to get injections into the sitting bone on the left side of my pelvis. I tried these injections with no success. I could not sit and my hypersensitivity to pain was off the charts. As my pain grew intolerable, the osteopath that I was working with moved his practice to Arizona and I was left to pick up the pieces.
Without a proper diagnosis or pain relief, I went into a deep depression. I lost the support of my dad, siblings, and most of my friends. They couldn’t understand how I’d gone from a physically strong young man to someone who was confined to a bed for years. At that age, I couldn’t handle the dimension of the pain I was in, and it changed me completely. Due to the stress and black clouds my pain brought to their home, my parents decided to move me to a small apartment. The loneliness and isolation only made my mental state worse. I had to have my parents cut my hair and clip my toenails while I lay in bed. My pain was so intense that I couldn't lift my leg to get into a bathtub/shower. The solution my mom and I came up with was placing a kiddie pool in the middle of the apartment kitchen and having my mom use a water sprayer that was hooked up to the kitchen sink’s nozzle. I would stand there in my underwear as she sprayed me down with water.
About a year later, I was moved to a town house. After I moved to the town house, my dad finally gave in and had a special shower installed that was easier for me to get in and out of. Nonetheless, his heart was not in the right place. He was pissed that special accommodations were being made for me. He thought I was exaggerating my pain. When he saw that I still relied on my mom for most things, he pushed for me to be checked into an overnight chronic-pain program. I had no idea how long I was expected to stay there. Would it be for two weeks or permanent? I had no idea. I pleaded with my mom not to go. After my refusal, I did not have any communication with my father. I had a great relationship with him growing up, but he had come to his breaking point. I was so hurt and mad that I would not talk to him again until he was on his deathbed with cancer six years later.
Without a proper diagnosis and with no results from mainstream medicine, my mom started looking into alternative medicine as I lay in my bed, rotting away. Sometimes I would go for three or four months before finding someone with a new therapy for me to try out. As you can imagine, my mental state plunged to depths of despair that were unimaginable a few years earlier. I could not sit and had to use a golf putter to help me put on my clothes.
My mom found a therapist who did a type of deep-tissue massage called Rolfing. Looking back, this therapy, over time, helped to relieve the compression of my nerve. I started feeling better and enrolled at a local community college. I used a walker and elevators to get around campus.
Due to my isolation, my mental state was very slow. I enrolled in a high school-level math class and had to drop it because I could not keep up. It would eventually take me eight years to graduate with a four-year degree. I would continue the Rolfing therapy weekly for the next fifteen years, as I graduated college and entered the workforce for the first time at the age of thirty-two.
My second experience with pudendal neuralgia happened when I was forty-two years old. While on a trip to Florida, I was walking fast and planted my right foot to stop and turn around. Suddenly I felt a sharp pain in the upper part of my right leg. I hoped it was just a pulled muscle. I was sadly mistaken. For the rest of my trip, I was in a bathtub filled with ice, trying to calm down the intense, throbbing pain. I told my girlfriend that this was exactly the same pain I had experienced when I was eighteen years old, only this time it was on the right side of my pelvis. The thought of getting on a plane back to Minnesota for three hours was frightening. With every bump of turbulence, I winced. When I arrived at the airport, I could not even walk to get my luggage. I had to have an airport cart take me to my ride home. When I got home I started having deep-tissue massages on my pelvis again, but they just ended up bruising my skin very badly and did not help my pain level.
Because I was in so much pain, I was open to trying anything to get relief. I was in such a bad mental state that my girlfriend called around to many churches to see if the pastor would come out and talk with me. On this occasion, only one pastor agreed to come over and talk with me. He was from a Spanish church in Saint Paul, Minnesota. I went to his church when they had a service for healing. They placed an air mattress at the front of the congregation, and I lay there during the service to be prayed over. At that time, I didn’t think it was helpful at all, but I appreciated them for trying to help me. My faith had been worn down by the pain. I was a broken man.
One day my girlfriend set up a phone call for me to talk to another healer from Texas. At the time, I went through the motions and took his call. He prayed for me and said I would see change within nineteen days. I knew my pain was not going to go away in three weeks. It was just too intense.
A couple weeks later, I went to an appointment with a chiropractor who said I might have an issue with my pudendal nerve. I did not give the diagnosis a second thought. I had heard it all before. When I was about to go to bed that night, I told my girlfriend that he thought it was a nerve problem and I only remembered that the nerve's name started with the letter "P". I did not remember the name or write it down. I didn't believe his diagnosis. She immediately googled "nerve in the pelvis" and found a link for “pudendal nerve.” It took her to a speech by Dr. Stanley Antolak. She asked me to watch it, and I reluctantly agreed. I watched with amazement as he talked about the exact pain I had experienced at eighteen years old and was now experiencing again at forty-two. We then found that he was practicing medicine at Medical Advanced Pain Specialists (MAPS) in Edina, Minnesota, only a half hour away from my home.
We called the next day to try and get an appointment with Dr. Antolak, but he was booked out for three months. I couldn’t wait three months to see him. I went to the phone book and found his home address. I wrote him a letter, but before I could send it, we received a call from MAPS saying they had a cancellation and asking if I would be able to take it. I said yes. This happened within nineteen days of my call with the Christian healer. I’d like to think that it was God who brought me to Dr. Antolak. The exam for pudendal neuralgia was incredibly painful, but Dr. Antolak was able to diagnose that I had nerve damage on both sides of my pelvis, and we moved forward with pudendal nerve-block injections. Without my girlfriend, Dr. Antolak, and the prayers of many, I would not be alive today.
The amount of money my family and I have paid for different therapies over the last twenty-five years is enormous. At the time of my injury, I had no job and no health insurance. I was paying out of pocket for all doctor appointments until I found (pre-existing-condition insurance plan) through the government. No other insurance plan would accept somebody like me with chronic pain, and it was a life-saver. The government did right by me.
Since finding Dr. Antolak, I have taken many nerve-block injections and my pain level has decreased. I’m now forty-seven years old and can now sit, using special pads, without experiencing throbbing pain. I’m still out of work and struggling to get back into the mainstream of life. I take a lot medicine for depression and have gone to counseling with a psychiatrist and psychologist for decades. I wanted to create an online community for people who have gone through similar experiences. Many people are not believed when they describe the intense pain brought on by pudendal neuralgia. Without proper diagnosis, many people commit suicide. I hope that with this website you can find information, support, and encouragement from people who are going through the same hell you are going through.