Sunday, February 5, 2012

The Onion of Pelvic Pain

My husband I are making our way to see an expert sacroiliac joint physical therapist today. I will undergo a four-day treatment during which my husband will learn how to correct my joint when I am out of alignment so the treatment can continue at home. I've seen 6 (yes 6!) PT's and all have said I have sacroiliac joint dysfunction (SIJD), but none have been able to get my pelvis to stay in alignment.

I still believe I have pudendal neuralgia and possible nerve entrapment, but I want to make sure I exhaust conservative treatment before heading to surgery. A fellow pelvic pain blogging friend said that her PT described treating pelvic pain as peeling back the layers of an onion. It is a tedious process that often involves multiple issues. Chronic pelvic pain rarely has a "quick fix" as there is a lot of mystery still to be discovered. It involoves multiple fields of medicine yet few doctors specialize to solely treat pelvic pain and if they do they cannot treat the entire "onion" because their knowledge base is limited to orthopedics, gynecology or neurology, etc. Patients often have to travel around the country in hopes of finding someone who can peel back one layer of the onion only to have to turn around and fly to the other side of the country to peel back another layer. Life savings are spent, marriages often fail, yet all the while the pain remains despite receiving the best available treatments. The goal most often is pain management not a cure, unfortunately.

I believe SIJD is one layer of my pelvic pain onion and perhaps it was the root cause of my pain, although we'll never know for sure. I do not understand how the pain in my neck, back, and legs could be coming solely from the pudendal nerve, but I can see how my SIJD could cause this widespread pain.  If I can get my pelvic joints and ligaments to stabilize then perhaps my pudendal symptoms could be managed through lifestyle modifications, medications, and pelvic floor PT allowing me to avoid the risky pudendal decompression surgery that has poor outcomes and a long recovery period.

My trip in August to see the pudendal neuralgia specialist was disappointing. Lots of time and money are invested into these trips. I do not know what the outcome of our upcoming trip will be, and it's often hard to see my husband's hard earned money swallowed up by ineffective treatment and our vacations turn into another trip to a "specialist". But we have to keep on fighting and looking for a better quality of life. I am sure there will come a day when we eventually say enough is enough, but we aren't there yet. We've been blessed beyond measure with friends and family who have generously helped us in so many ways during this battle and even more blessed by a gracious and merciful God who has already won the real battle. We'd appreciate your prayers this week.
 "How long, O LORD? Will you forget me forever? How long will you hide your face from me? How long must I take counsel in my soul and have sorrow in my heart all the day? How long shall my enemy be exalted over me? But I have trusted in your steadfast love; my heart shall rejoice in your salvation. I will sing to the LORD, because he has dealt bountifully with me." Psalm 13:1-2, 5-6   


  1. You will be in my prayers all this week!


  2. Found your site today and I'm glad I found it. Great post and I feel like I've learned a bit about your pain. I'm glad I've found someone who shares in my pain. I've lived with chronic pain since 2006 when I was diagnosed with CRPS. I look forward to staying in touch!

  3. People who suffer from chronic pain should certainly not lose hope. Things can get better. There is a growing community of people and doctors that are doing their best to help and come up with a cure.