Wednesday, January 19, 2011

Closing Doors

This past monday I went for my out of town treatment to the urogynocologist's office. They didn't do more trigger point injections into the pelvic floor because last time it seemed to flare me so much. The PT said she couldn't feel any difference with or without the trigger point injections (so that's good I guess although I wish they would have helped more). The PT there feels that my PT back home has been doing just as good a job as she can do so there is really no point for us to drive for more treatments.  I had hoped to at least see the urogynocologist again because I have had a flare up of my vulvodynia symptoms and want to just make sure there is no other possible OBGYN cause of my pain (like pelvic congestion syndrome which I have some of the symptoms of this).  But unfortunately it looks like they may no longer take my insurance after February 1st and I was supposed to see the doctor on February 3rd. So unless something changes I won't be going back to that doctor anymore.

It's discouraging, but at the same time I feel like God is closing doors. We have been praying for guidance for my medical diagnosis and treatments for so long now.  I feel like God is maybe just saying "this isn't it".   I feel like maybe we just need to save our money and go to the specialists who treat pudendal neuralgia (PN). There are only a handful in the US who really focus on treatment of PN.  Until then I have a doctor in my hometown who is PN aware and can order PT if I want to continue that and any medications I need.  I have tried conservative measures (meds, PT, nerve blocks) and am still not getting pain relief. My quality of life right now on a scale of 1-10(with 10 being the highest) would probably be a 4-5. So I am just praying the PN specialist I see in Phoenix in August will be able to give me some options for better relief. If not then I guess I will have to turn to a pain management doctor and use whatever necessary (pain pump, sacral nerve stimulator, narcotics) to hopefully regain some quality of life.  It's not the life I would choose, but I am ready to do whatever I need to do to get a least a little better.

I see Dr. C (the physiatrist who treats pelvic pain pts in my hometown) on Tuesday. I am looking forward to talking to her now that I have a more "official" diagnosis and get her opinion on things.  I think my current vulvar burning must be from either the nerve block I had last week or where I am in my cycle.  It's also possible that it's related to the weather. I know it sounds crazy, but I have noticed that I tend to flare on days when it rains. I have read this to be true with several different types of pain that barometric changes in the weather can affect the  pain. Whatever the caue it's very frustrating because I don't think I have had this much continuous burning since I was pregnant.

The hardest part is being patient and trusting that God is going to take care of me no matter what happens. Even though times of suffering really surprise us, the Bible tells us we shouldn't be surprised that we suffer.  I have been reminded of this verse a lot this week. Hopefully you will be encouraged by it too.

"Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you.  But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed."  1Peter 4:12-13

1 comment:

  1. I think the burning could easily be related to your nerve block, but you know how I feel about the blocks! :)

    "As though something strange were happening to you..." It's definitely a crazy strange ride. We are blessed that we have the promise of rejoicing with Christ one day.