I am reposting my story so it doesn’t get buried in the middle of this blog. This was written when I realized I was going to be able to live my life again, after several years bedridden and suffering in extreme pelvic pain.
Originally, I posted this on the forum of pudendalhope.com in February, 2013. You can find it here:
Hi PNE friends,
I never thought I would be posting here. This is where I used to come and read about others’ successes just so I knew there was hope, that some people did get better and have a life again.
Now that person is ME! I had to go through a LOT to get here, but I can say it has been about a month now that I have been pain-free, or feeling minimal pain that I am able to ignore. And I have been told to expect even more improvement as time goes on.
What happened: After 17 years of IC and PNE, 2 hydrodistentions, every medication you can think of, countless nerve blocks and PT, 3 PNE surgeries and ketamine infusions — I finally found a pathway out of the pain. In Jan 2012 I tried ketamine infusions with Dr. Joshua Prager, director of California Pain Medicine and the UCLA Pain Program. They worked … for only two days, when my IC bladder went into a horrible flare that had me doubled over in a fetal position. (Ketamine is known to cause bladder damage, so those of us with IC unfortunately cannot benefit from it.) Anyway, just the fact that I had a couple of great days virtually pain-free made me realize how much of the pain is faulty perception of the brain and central nervous system, and I began reading about Central Sensitization. I learned that pain researchers are starting to understand that many chronic pain syndromes are actually a form of CRPS, or RSD. Dr. Prager told me he even suspects that IC is a form of CRPS, and said that if I had a functional MRI my brain would be lit up like a circus, as the pain signals had become “upregulated” to the brain. My brain and nervous system were on hyper alert, so that even minimal pain signals were amplified in a cycle that spun out of control, so that every moment of every day (and night) was misery. It would take strong intervention to block those signals at the pain receptors between the nerves and the brain.
I had spent the past two years totally bedridden, only leaving the house for doctor appointments, using a reclining wheelchair because I could not sit. I was constantly rotating ice packs and my heating pad 24/7, along with heavy duty medications such as the Fentanyl patch, hydrocodone and valium. When ketamine was ruled out for me I was in despair, and all I could think about was a final solution. I didn’t really want to die, but I just didn’t want to be here anymore. I was going out of my mind with pain. I told my family it felt like I was being tortured.
I had been given two more options by Dr. Prager, but it took months for me to accept having either one of them — a neurostimulator or pain pump. I asked him what he would do in my place, and he said “the pain pump” because he was “sure he could get the pain.” I learned he had two other patients who had been just as severe as I was, and now they were both thriving. One was an active mom and grandmother who has had her pump for the past 15 years. He had her call me the next day and I felt an instant kinship with her. She was very kind and reassured me about the process many times.
In October of 2012 I had the trial to see if the pain pump would work for me. I had a procedure with local anesthesia where a specialized catheter was inserted into the spinal fluid near the nerve roots affecting the pelvic area. It was connected to a drip containing bupivacaine (marcaine), morphine and clonidine. The main ingredient was bupivacaine, an anesthetic.
It was miraculous! I spent the day in the UCLA outpatient facility, happily walking the halls and sitting in various chairs in the waiting room — something I hadn’t been able to do for years! The pain in my bladder, vulva and left buttock and leg was gone! My family and I were giddy with hope, and we scheduled surgery to implant the pump for the next month.
On November 13, 2012 I had the surgery. It took two months of adjustments, as they had to start with a very low dose of the medication, but as they titrated me up I got better and better. On January 4, 2013 I realized I had “arrived.” I felt great! I even drove all the way home from LA, with my astonished sister in the passenger seat, amazed at my transformation. Since then I have gone to the movies with my husband (holding hands and feeling like high school kids on a date), I’ve driven to the grocery store, to friends’ houses, to appointments. I keep pinching myself, hardly believing this is real.
It took me a long time to take the step of having a foreign object implanted in my body, but now I’m so grateful for it. I think I need to give my pump a name, to embrace it as a part of myself that is giving me new life. My sister and my husband have tears in their eyes when they see me walking around, doing everyday things, because they were there with me in the trenches, when I no longer wanted to continue. Now I have a future, and I plan on experiencing every bit of it! On my feet, not in my bed!