For the last 3.5 weeks I have been experiencing some of the most debilitating pain I have had thus far. My worst pain right now is burning around my "sit bones" that often goes into my upper hamstrings. It is bilateral, although the left is worse as usual. I am pretty much unable to sit at all. I usually sit on ice if I do sit and then only for about 10 minutes. This is much worse as prior to the botox I was sitting for about 30 minutes on my cushion. I am also having a lot of burning in my legs especially at night. When I lay down I can't hardly tolerate my knees touching they burn so bad. It often feels like my whole lower half of my body is on fire and no medication helps. I used to wake up feeling better than I did when I went to bed, but now I wake up and immediately it feels like someone has kicked me in my pelvic floor as it throbs and burns.
I am trialing (for the second time) a Roho cushion, a special cushion for people in wheelchairs that reduces pressure while sitting. I am trialing the "low profile" and a few months ago I trialed the "high profile", but I know a former pudendal neuralgia sufferer who uses the "contour select". It's a hard time to test it right now however because any sitting seems to increase my pain.
- My PN specialist called me back (I asked prayer for this in my last update)!
- About the only kind of shoes I can stand to wear are Dansko clogs...they are really expensive though, but this Friday I went out to do a little shopping for the first time since this bad flare came on and I found a "seconds" pair for $40, regularly $140! Not quite as comfy as my old ones, but hopefully with time they will be. Thank you God!
- Pray that God would please help me find relief from this new pain I am experiencing in my "sit bones"/hamstrings so that I would be able to sit again a little (go to church/activities, drive to my parents house without great pain, etc)
- After doing research on my two treatment options I felt the spinal cord stimulator was not the way to go right now for several reasons, so I had come to the conclusion I would most likely have surgery in January. However, due to this new pain, I am really concerned about having surgery as I am just not sure it will help this new pain. The PN specialist still feels it is very likely the pudendal nerve is entrapped based on my history/symptoms, but I do not want to have a surgery where my butt is cut open and a nerve is decompressed and it not be the source of the pain! This is the hardest decision I have ever had to make in my life, and despire prayer and research, I just still don't have peace about what to do. Please pray God would show us the way we should go. I have to have an evaluation from a psychologist if I go the stimulator route...that would be November 14th. I am still keeping all my options open now.
- I go this Thursday to see my pelvic pain doctor again (although I've debated on this because it kind of seems like a waste since she isn't doing very much to help me). She turned my pain medication management over to my pain doctor, but I've been waiting over a week for him to call me back. I don't know what he can really offer me though as I've tried almost all the medications they give people with chronic pain. This Thursday I am also going to see "supposedly" one the best pelvic PT in my region. I am very tired of seeing PTs as they have only worsened my pain so far, but my doctor wanted me to see this one for one last opinion before proceeding with more invasive treatment. Pray that maybe she'll have some insight that will help me in my treatment decision.
- I'm also awaiting a phone consultation with one of the nation's best PTs for sacroiliac joint dysfunction. I don't think this is my primary problem anymore, but I wanted to get her opinion of my situation as well. Pray that I get to talk to her prior to talking to the PT I will see on Thursday.