Saturday, February 5, 2011

Change of Plans

If you remember a couple weeks ago I was told the out of town urogynocologist I have been seeing would not be accepting my insurance as of Feb 1st.  Well, apparently they are still negotiating so for now they will continue taking my insurance.  After my very disappointing appointment with my local doctor we felt it was a good idea to go ahead and go to see the urogyno. 

The doctor there says that she does think I have pudendal neuralgia and wants to me try a continuous birth control pill, and if I tolerate that ok in a couple weeks I will try Cymbalta.  She also wants me to go back to the pain management doctor who did my nerve blocks because he thinks he has a couple of other options for me to get pain relief.  One is called pulsed radiofrequency. Basically they use heat to interrupt nerve conduction and some people get pain relief results for up to 6 months.  The results with pudendal neuralgia however aren't that great.  Click here to read an article about it used in pudenal neuralgia with good results.  I do not know how I feel about this procedure. There have been people that have gotten significantly worse so I don't know if I am willing to get worse.  Also the pudendal neuralgia specialists do not require people to try this procedure before having surgery.  Another option is a sacral nerve stimulator, but this too hasn't had great results with pudnedal neuralgia and if I chose to do this I would never be able to have another baby and my life would have limitations. I do not know that I am ready for something like this yet, even though my pain is very bad. I know that  this pain management doctor does not think my pain is coming from the sacroiliac joint, but I really would like to try an SI joint injection before seeing a pudendal neuralgia specialist.  Thankfully my urogynocologist thought it was a good idea to make an appointment with a specialist (since it will be August before I can see the doctor in Phoenix).  I am praying the urogynocolgist will continue to take my insurance because as of now I do not feel comfortable going back to my local doctor. Mutual trust and respect has been lost and I think it's probably best not to pursue care from her anymore.  I do want a local doctor to understand my case because I feel like if I ever have to have surgery I will need a local doctor to do follow up care since my urogyno is 2 1/2 hours away.  Please be praying that I will be able to get this doctor situation straightened out! I feel like I have been to so many doctors, but I have talked to others suffering with pudendal neuralgia and it is extremely common to see 10+ doctors before finding the right one who understands and will treat this condition.

So I started the birth control which I am not thrilled about, but at this point I am willing to try anything to get better control of this pain!  I tried to increase my Neurontin as well, but I  got so dizzy I just didn't feel safe driving and I was having trouble caring for my daughter. It didn't help my pain anymore either.  I have been pretty flared up the past few days. My sacral pain is really bad and I just don't know if it is referred pain from the pudendal nerve or something else like my SI joint. My PT doesn't think it's my SI joint and neither does the pain management doctor, so i guess it's not, but it sure is high up to be coming from the pudendal nerve. It's hard to know what caused my "flare" is it the barometric changes since we have hae rain/snow lately, have  not gotten enough sleep, did I lift my daughter wrong or squat too much trying to help her pick up toys.  It's always a mystery.  I am really in need of a good massage. Massage seems to help me almost more than anything else. I just wish they were covered by insurance!  I am also considering trying acupuncture. Its expensive, but if it would be worth it! I don't expect it to help with the nerve pain, but maybe it will help with my myofasical "fibromyaliga" type pains and sacral pain.  I am going to start going to PT again twice a week in hopes it will help me get my pain under better control again. I seemed to be feeling better in December when I was going twice a week.  So we'll see.  Welcome to the world of the chronic pain sufferer...constantly trying new things and trying to get the exact "recipe" to keep the pain under better control.

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