Wednesday, August 24, 2011

Reflections on Phoenix and Prayer Requests

photo by my husband at Tempe, AZ Town Lake
It's been a week now since my consult with the pudendal neuralgia specialist and tomorrow will be a week since my injections. I wanted to share a few more details about my trip, especially for all my pelvic pain friends reading.

I saw a pudendal neuralgia (PN) specialist, and the pelvic physical therapist he uses. They both feel I have PN, but of course it is unknown if it is a true entrapment (that can only be diagnosed in surgery) and this doctor doesn't jump to surgery quickly, thankfully.

The physical therapist believes I had a "perfect storm" of events which caused my PN including a probable life-long history of joint laxity, the vulvodynia pain during pregnancy, the vaginal delivery with tearing, and culminating to point with a high velocity Sacroiliac (SI) joint manipulation in PT that likely caused an "over-stretching" of the Sacrotuberous ligament  (ST) putting constant irritation on the pudendal nerve that runs right under the ST ligament.  The generalized joint "laxity" or hypermobility (double jointed in layman's terms) is a new concept for me. But the more I think about it; it makes some sense. It seems that people with joint hypermobility are predisposed to joint and muscle pain. The ligaments are what supports our bones and when the ligaments are "lax" the muscles have to work harder to stabilize the bones and ligaments. I have always been a person that gets extremely sore when exercising.  I had several dislocations of my shoulder as a child and suffered from different joint pain, especially shoulder as a competitive swimmer.  This could also account for my minor low back pain working as a nurse. Some research shows that people with this condition may be more prone to central sensitization and syndromes like fibromyalgia.  I am able to hyperextend my elbows and the PT thinks this may be what is causing my elbow pain. It could also be what has caused my knee pain at times throughout my life. She thinks I have probably been in and out of pelvic alignment my whole life or at least in recent years. Which is why sometimes I go to doctors/PTs and am out of alignment and sometimes I am not. This would also explain why when I went to the PT who did the high velocity SI joint manipulation she found that I was out of alignment, but I wasn't even experiencing SI joint related pain. I could have looked out of alignment because I was still breastfeeding so my pelvic ligaments were still extra lax from the relaxin hormone and because I have generalized hypermobility. In fact I can be out of alignment one minute and move my body a little and be back in alignment. The thing is even if I am "in alignment" I still have pain. The ability to hyper extend my elbows predisposes compression of the ulnar nerve around the posterior part of the elbow, which explains my numbness/tingling in my fingers at times and pain with overuse of my forearms, such as with typing). She also said some people with joint laxity are prone to "tunnel" syndromes like carpal tunnel, cubbital tunnel, possibly pudendal nerve entrapment, etc. I find this interesting because several people I have talked to online with pudendal neuralgia have had other "tunnel" syndromes.

I had a lot of "crunchy" stuff (i.e. scar tissue or connective tissue adhesions) built up around the sacrotuberos ligament along the sacrum and tailbone. That is where a lot of my sacral pain is. While the SI joint laxity is there she didn't feel like prolotherapy or any amount of SI manipulating would help until I got the PN calmed down. And she didn't feel like any amount of PT would help until I had something to jump start PT, like maybe botox. My left side of my pelvic floor has spasms especially in the levator ani and obturator internus muscles toward alcock's canal, which is the most common site of pudendal nerve entrapment. I have some pelvic floor tightness on the right, but she thinks it is all reactive to the PN on the left. I don't have any sacral pain on the right.
Photo by my husband as he tried to climb Piestewa Peak in the 112 degree Phoenix heat

The doctor was very personable. He could identify with our situation in having a young child while dealing with chronic pain as his wife herniated a disk during labor with their second child and the difficulties they experienced. He appreciated the fact that I am a nurse and respected the knowledge I have as well as all I had researched about PN. He agreed with the PT that my left side was pretty severely spasmed and while he can't promise me I am not entrapped he is hopeful botox will help me at least for a few months.

So he offered botox the next day after our consult. We didn't (and still don't) know what insurance will cover, but didn't want to have to fly back to Phoenix and all the expense that would cost. And I definitely wanted to try botox before anything more drastic. So we felt like it was the right thing to do and it was an answer to prayer since we were told previously that my trip to Phoenix would only be a consult. The doctor injected 200units of botox in several areas into my left side under general anesthesia. He also does a nerve block to help prevent post procedure central nervous system sensitization and pain. God was definitely at work in that the physical therapist had scheduled 6 weeks prior to be in surgery that day for a case following mine. This worked out really well because she had suggested a trigger point injection with kenalog (steroid) into my proximal sacrotuberous ligament so she was able to be in the OR show him where she thought I needed it and then stretch it afterward.

I have been in a lot more pain since the procedure, especially in my sacrum around where the trigger point injection was done. He said is will likely take 2 weeks for the botox to kick in and at most it would last 4 months. I am hopeful this will help, but am concerned about the pain I am experiencing in my sacrum. I am having a lot of muscle spasms in my pelvis and legs which I have read is to be expected because as the muscles injected with Botox relax the surrounding muscles spasm to take up the "slack". So for now, I am mostly lying down (walking is sometimes painful and bending/lifting greatly increases my pain) and living on an ice pack. Narcotics make me tearful, anxious, and dizzy and haven't done a lot to help with my pain. I am using some Valium suppositories at night, but when I wake up and start moving the pain comes right back. 

I am concerned about my lax pelvic ligaments as well because while the generalized joint laxity makes sense to me I don't understand the long term effects. If botox does calm down my PN and take away most of my pain, but my SI ligaments are hypermobile constantly moving and putting pressure on the pudendal nerve won't my PN come back?  I feel like if I am entrapped it is most likely at the ST/SS ligament and probably down into alcock's canal on the left side. But, I do not want to have pudendal nerve decompression surgery just to turn around and have scar tissue reform because my pelvic ligaments are out of alignment at times. Even this little procedure has opened my eyes to how painful decompression recovery might be. Same thing with prolotherapy (a treatment sometimes done for SI joint dysfunction) which causes irritation so scar tissue will form and I don't want scar tissue to form if I am out of alignment. I had an SI joint injection that didn't affect my pain at all though so I am not sure the pain is even related to the SI joint. It's definitely a complicated case.

For now, all I can do is wait. If the botox doesn't help I think we may pursue some SI joint evaluation with some specialists but I am not for sure. The main thing is I need a lot of prayer right now.

Please pray that:

1. My pain will get better (at least back to where I was pre-injections) and ideally better altogether
2. My pain will decrease enough for me to start my new job September 6th
3. That insurance will cover some of the botox procedure as it is very expensive
4. God will give us wisdom for the future and the decisions that have to be made

For those of you who read this long post...thanks :)


  1. I did read this and thanks for the update.
    I'm sorry for your suffering.

    Pelvic pain is a difficult thing. I've had it for four years and hope for a full recovery. I relate to your not being able to sit down. You don't need to explain to those of us who know and understand. You're not alone.

    Let's hope.

  2. Blog looks great! love the new design! good to hear an update on your trip to AZ- was def. praying for you. will continue to do so. much love to you my friend. so grateful to know you.

  3. I stumbled onto your blog as I was researching PN related articles. I have had PN for a little over two years as a result of being t-boned in a car accident by a driver who ran a red light. I can empathize with you and your painful journey. I'm sorry that anyone has to live with this terrible pain and I pray that you will find some relief. I just had my third round of injections on Wednesday and have to go back (I see Dr. Antolak in Minneapolis) in October for round 4. I always hurt worse after the injection, so I have "tummy time" and lots of ice.
    One of the things I have tried is called Cranio-Sacral Therapy. It's beyond weird, but it provides at least a little relief (nothing long term, which frustrates my therapist, but I'm THRILLED for an hour or two (sometimes even longer) with a reprieve! Costs about the same as a massage.

    Prayers for you that God will ease your suffering and bring you peace (and that the insurance would PAY!!!)