I went on Tuesday to my out of town pelvic pain specialist. I feel sometimes like she just doesn't know what to do with me. I explained how much pain I've been in recently and she feels like I have just developed a chronic pain syndrome (Myofascial Pain Syndrome). I do not doubt I have developed chronic pain as I have been dealing with this now for 7 months, but I want to understand what exactly started my pain. When I started having pain it was in the sacral area and shot down into my pelvic floor making sitting uncomfortable. I want to know what makes sitting uncomfortable. She says my central nervous system is "going crazy" and causing me to have all this pain. So the goal is to break the pain cycle. I am all about getting the pain under control, but I want to know why I can't sit. There are a lot of people who have chronic pain that affects their central nervous system who can sit just fine. I told her I think that I have pudendal neuralgia (damage to the pudendal nerve which innervates the pelvic floor). She said she will send me to a urologist in the same city that studied under a doctor in Minnesota who specializes in pudendal neuralgia and have him do a pudendal nerve block to diagnose if I do indeed have pudendal neuralgia. The problem is even if I do have pudendal neuralgia there isn't a cure and treatment is very difficult. I am already basically doing all the treatments I would do if I have pudendal neuralgia so i don't know if the block is worth it. They would only use anesthetic, no steroids since I responded so badly to the nerve injection with steroid I had in August. I also have a lot of bio-mechanical issues that can affect my pelvic pain such as sacroiliac joint dysfunction, but I have not responded well to physical therapy. In fact I seem to get worse with PT. So we are praying about whether to go to this doctor or whether to seek out a pudendal nerve specialist which would require us to fly to see a doctor. My pelvic pain doctor said I don't have to travel to see her, we can just adjust meds via phone for a while. I guess that's good since I had to lay down in the car for the entire 3 1/2 hour drive.
For now, my doctor increased my Neurontin dosage and wants me to try to wean off the Desipramine, which is a low dose antidepressant and is supposed to help with chronic pain and sleeping. She also wants me to take pain medication when I need it to try and keep my pain levels lower. It's so hard for me to take medications because I don't want to need them. I want to be "normal". My pain levels are around a 6-8/10 daily right now even with pain medication sometimes. Before this "flare-up" I held around a 4/10 daily. The doctor thinks I shouldn't do physical therapy until my pain level comes down, but not doing PT makes me feel like I will never get better because I am not doing anything to get better other than medications.
It's scary. What if we can't get the pain under control? What if I just continue to worsen? How am I going to live like this? I already can't hardly take care of my family. But I know God is in control. He loves me and He promises to care for me. It may not be the life I want to live, but I don't have to be afraid. In fact, God tells me not to fear.
I spend a lot of my extra time reading about what could be wrong with me trying to "diagnose" myself. Sometimes I think I trust in medicine or doctors more than I trust in God. When in reality God is my only hope. If I get better it will only be because of God's mercy. So, I am going to try not to read about my condition for the next few days and instead spend that extra time reading God's promises and praying.
Monday I will go to see the Rheumatologist, another piece of this confusing puzzle.
"God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling." Psalm 46:1-3