I've been struggling with burning in my groin and upper quadriceps off and on ever since I tried the intense alternative treatment back in May, but this burning throughout my legs and pain when lying down is pretty debilitating. It could be due to muscle tightness caused by compensation from all my pelvic dysfunction, but I feel like it's probably due to central sensitization (this is a link to a short video clip explaining what happens in central sensitization) unfortunately as pain medication doesn't even touch the pain. Next month I am going to try some drug infusions to hopefully help calm down my central nervous system and get the pain under better control.
Please pray that my insurance company will pay for these infusions. My doctor has submitted a letter of medical necessity and I am waiting to hear back from them. Please pray that the infusions will work to help manage my pain better and the side effects will be tolerable. If it does help, this is something I can do on a regular basis to manage my pain. Praise God I found a local pain doctor willing to try this!
Thankfully my doctor is willing to give us a "deal" (though still not cheap) so we feel like we need to go ahead and try the infusions as my pain is just becoming worse and worse. We will battle the insurance company after the infusions if we have to. I am concerned because the dosage this doctor is planning to give me is small and the infusions will only be for 3 days (2 hours each day) so this may not be enough to tell if the medications will help me. But it is the best option I have at this point without traveling across the country to a specialist who deals specifically with this type of pain syndrome.
Three weeks ago we visited a hip specialist and I had an MRI of my left hip (where most of my pelvic floor/sacral pain is). Interestingly they found some damage to my hip - a labral tear and ischiofemoral impingement. I was surprised to say the least, after 4 years of going to doctors and never finding anything concrete on scans. What does this mean? Was this the actual cause of my pain to begin with? I don't know, but it's possible. There is a study (read abstract on page 29 of 32) being done out of New York that suggests a correlation between labral hip tears and pelvic floor pain. However, my case is complicated due to the central sensitization and while arthroscopic surgery can be done to correct the labral tear it is possible that even with surgery my pain could become worse if my central nervous system is driving the pain. It's also important to know the cause of the labral tear, which mine seems to be congenital according to the specialist, but I also have a degree of hypermobility in my joints and this could also lead to a poor surgical outcome. I plan to look into this more in the coming months as well.
I did have a hip injection that relieved my hip pain (which is minimal honestly compared to everything else) for several hours. (I have wondered a little if the hip injection is what set off the burning in my legs, but the injection was only in one hip and my pain is bilateral and the burning didn't start until about 3 days after the injection - but then again anything is possible with central sensitization it seems!) I feel like it is possible that the hip damage has caused all the muscle dysfunction and nerve irritation/pudendal neuralgia in my pelvis and that if the hip was repaired and I had consistent good physical therapy (which is a problem where I live) then over time some of the other pelvic pain might resolve. Of course until I get some of the burning in my legs calmed down I do not know if I feel comfortable pursuing a surgery.
We are traveling this week to see the hip specialist again and I will be getting an MRI of my right hip (I actually have more true hip pain in my right hip) as the specialist thinks I have a labral tear in my right hip as well. I have a lot of questions to ask her and will see their PT as well as my pelvic floor PT. Pray that God will give us wisdom as we seek answers to these questions.
We continue to need prayer that our hope would be in God, especially for me in these hard days, and that I would call out to Him for grace to sustain me in my physical weakness. And most importantly that we would truly trust Him.
And of course we covet your prayers for healing and if not healing then better days and a better understanding of what is causing my pain and the ability to get treatment to help me.
Recently a Facebook "fan" recommended a sermon to me by Pastor Timothy Keller entitled "Questions of Suffering" that is very convicting. He talks about the "Why?" question of suffering saying that we must:
- Avoid the pat answers of "why do we suffer"
- Embrace living without an answer to "why am I suffering"
- Anticipate the final answer