An Update

Tomorrow will be 7 weeks since I traveled to see the sacroiliac joint dysfunction (SIJD) physical therapist expert. You can read more about that experience here. I have been doing correction techniques several times a day to get my hypermobile SI joint back in alignment, taping (you can see a video here of the taping technique I use) or wearing an SI belt, and doing core strengthening and stretches exercises.

At about week 3 I had to back off of the exercises some because it was causing some increase in pain. But overall my pain has been more tolerable these last 6 weeks than since before my botox injections. I have had less tightness in my back, neck, and legs (allowing me to stand for a little longer). I do not know if this is because of the PT, the fact that I've been taking a low dose of Flexeril (muscle relaxer) at night to help with sleep (getting a good night of sleep usually helps me to have less overall muscle pain), if it just took 6 months for the botox to wear off completely, or if God is just slowly answer my prayers for a better quality of life. I am still worse than I was before the August botox treatment, but I am grateful to God for the improvement I have experienced.

My SI joint does not stay in alignment very long due to my lax ligaments and the pelvic floor pain/pudendal neuralgia. Unfortunately I have not seen any improvement in my ability to sit so I do not think the "6 week protocol" the PT put me on is going to reduce my pain enough to allow me to function more normally.  So what's the next step?

In May I'm scheduled to have an MRI in New York City (one good thing about this condition is it requires us to travel -which we love!) that will look at the pudendal and other pelvic nerves. This radiologist is internationally renown as the best at looking for pelvic nerve entrapment. I have some doubts about the accuracy of the findings because there has not been any controlled studies performed, thanks to the rarity of this condition. But I have been waiting for this appointment for several months and if nothing else, an MRI that says I have pudendal nerve entrapment (whether it is completely accurate or not) may help my disability case if I continue to be unable to work. As of now I have nothing to "prove" my pain exists other than my response to nerve blocks. Of course the MRI could be "normal" and I could still have PN or something else unknown.

Over the last month or so I have decided that, as it currently stands, the pudendal decompression surgery is not a good option for me. I have widespread pain (likely caused by central nervous system sensitization) and a complicated case involving the "chicken or the egg" scenario between SIJD and PN, so I'm afraid that surgery will only add more complication to my case. I've been doing a lot of research, thinking, and praying and am leaning towards trying some alternative treatments for my pain. The only problem with alternative treatment is - it is not covered by insurance. The treatment we are currently planning to pursue will be done out of the country, is very painful, and will eat through our savings quickly. If the treatment doesn't work we will not be able to try anything else until my husband gets a better paying job (which could be 16 months or even longer) . So this treatment is a huge commitment and sacrifice, but I actually feel at peace about it, more so than any of our other options.

Prayer Requests:

• We received an anonymous gift of $300 last week (Praise God!) and now we know why. It looks like my husband will have to have a tooth crown replaced. God always provides! But pray with us that maybe something can be done to fix the current crown so we can use that money towards my medical bills.
• Pray that God would open up doors for a better paying job for my husband or that God would provide for us until He chooses to give my husband a different job.
• Pray that God would continue to guide us as we seek answers to my pain and how to treat it. If I am not supposed to get this treatment out of country, pray that God would not let us "waste" our money.
• Pray that God would continue to give me better days, and that I would be diligent to do all I can to regain strength and a better quality of life.
• Above all else -pray that we would trust God and seek Him first!

Thanks for caring and praying! As always, send me an email and let me know how I can be praying for you.

Update on SIJD Treatment

Thank you for all your prayers, emails, and encouraging words as my husband and I traveled to see a PT who specializes in sacroiliac joint dysfunction (SIJD). The trip was a little disappointing, but we trust God ordained this experience for a reason and only time will tell if the treatment helps my pain.

This PT agrees with the other 6 PTs I've seen that I have sacroiliac joint dysfunction (here is a picture of the SI joint in case you are unfamiliar with the anatomy). This joint is a movable joint like other joints in the body, but the degree of motion is debatable depending on what sources you look at. The surrounding ligaments and muscles are supposed to stabilize the joint so that it when it moves it goes back to it's proper alignment. But sometimes the joint gets "stuck" and doesn't move properly or moves too much and this causes SIJD. This can be caused by a variety of issues including arthritis to the joint, joint capsule tear, or ligament laxity (meaning the ligaments do not hold the joint in place). Ligament laxity happens during pregnancy to make room for the expanding baby, and while most women's ligaments tighten back after delivery/nursing some do not. I went to a PT at about 6 months postpartum (see more about that experience here), while I was still nursing my daughter, and that PT found SIJD, although I wasn't having pain in the typical area associated with SIJD. I think that it is very likely that the technique the PT used actually tore or further stretched an already lax ligament leading to a much worse situation and increase in pain. Unfortunately ligaments are not usually visualized well on MRI so if there was a tear, it could have easily been missed.

The PT I saw feels that my widespread muscle pain (I literally have pain from my head to my toes at times) is caused by something called malalignment syndrome. She gave me a handout from this book which was pretty eye opening and it made sense why some of my random pains seem to come and go and especially why I have been dealing with such bad leg pain. The way to treat malalignment syndrome is to get the pelvis to stay in the proper alignment, which is often easier said than done especially when the condition has become chronic like mine. The therapist has a standard 6 week protocol she puts her SIJD patients, however, no two SIJD patients are exactly alike so I wish she did more to "tweak" the protocol based on symptoms (this may be partly why her protocol doesn't always work).

I did like that she taught my husband how to check to see if my pelvis is in alignment and taught us exercises, corrections, and taping to do to get the pelvis back into alignment. However, her protocol was fairly simple and is pretty well explained in her book so I think two days (rather than four) would have been plenty of time with the therapist. She also did not know much about pudendal neuralgia or pelvic floor pain, which I am not too surprised about. The treatment was not cheap, however, if it works it is much cheaper than any of my other treatment options. She was also quick to say that if after 6 weeks her protocol does not work then I would have to look into more invasive options like sacroiliac joint fixation/fusion surgery or prolotherapy (which does not have much evidence based practice). This concerned me because I have not had a positive SI joint injection, which is the gold standard of diagnostic prior to surgical intervention. Thankfully I do not take what an medical professional says as fact without thorough research, thought, and most importantly prayer.

My pelvic pain as I've previously discussed is quite complex as the pelvic floor pain makes it hard to do some of the exercises necessary to stabilize the SI joint. The SIJD could be causing my pelvic floor pain or the pudendal neuralgia/possible entrapment could be causing the SIJD. I have had more symptoms consistent with pudendal neuralgia longer than I have had the symptoms of SIJD and even now my SIJD is not typical. One of my major symptoms of "sit bone" pain is not clearly pudendal neuralgia or SIJD (it's most likely a combination or neuralgia of another nerve, possibly the posterior femoral cutaneous).  Even if the SIJD is the overall pain generator it is very possible conservative measures will not stabilize the joint. I do not stay in alignment for more than a few minutes to possibly a couple of hours maximum right now, due to the extreme laxity of my ligaments and spasm of my muscles. The PT said it would take months of me staying in alignment before all my associated muscle dysfunction and pain were gone).  And if the 6 week protocol doesn't work what do we do next? Pudendal nerve decompression surgery, prolotherapy, another SI injection or pudendal nerve injection to try to better confirm diagnosis, proceed with my scheduled MRI in NYC -the best available imaging for pudendal nerve entrapment, reconsider a spinal cord stimulator, or try a very alternative shockwave therapy that is being done in Canada?

We also saw a doctor who did an EMG, nerve conduction study, of my sciatica, lower lumber nerves, and some nerves in my legs to help diagnose the burning in my feet. My readings were actually extremely high and completely normal. This ruled out piriformis syndrome which can often occur with SIJD. Interestingly the amplitude on my left side (which is where my worst pain is) is larger and demonstrates less inhibition of the voltage they use to test the conduction. His only explanation of this is that there is central nervous system sensitization (a hypersensitivity to pain that happens to some people, but is not well understood). Several other doctors have "diagnosed" me with this and he believes this as well as nerve cross-talk is what is causing the burning in my feet. This doctor was one of the nicest and most intelligent doctors I've seen. He spent almost 2 hours with us and complemented my knowledge base encouraging me to not give up my profession of nursing even if I can no longer work. He said I should try to offer support and counsel to people online. I didn't tell him that I am a blogger :) Too bad all doctors can't be more like him.

So, for those of you who have actually read this far :), I will continue to complete the 6 week protocol of stabilizing the SI joint and strengthening/stretching the surrounding muscles as long as it does not flare up my pain too much. As for what we will do next, I have no idea. Pray with us that this will at least reduce my pain significantly enough that I can avoid surgical interventions. While I do not think this treatment will all of a sudden cure my chronic pain, I do hope it is one more piece of this massive puzzle called pelvic pain.

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 :)

Upcoming Pudendal Neuralgia Specialist Consult

In about 3 1/2 weeks I will travel to see one of the leading specialists for pudendal neuralgia (I really like this concise article that explains pudendal neuralgia, its diagnosis and treatment options). This doctor is one of only about a dozen surgeons in the world who perform surgery to release the pudendal nerve if it has become entrapped in ligaments, muscles, or scar tissue. Here is a great link to an online radio talk show interviewing one of the country's leading pelvic floor physical therpists and pudendal neuralgia experts.

This appointment will most likely only be a consultion. There are still other things such as botox injections that he will probably want to try before surgery is even considered (I may unfortunately have to make multiple trips to Arizona).  I have had a few hours relief from a pudendal nerve block and most of my symptoms are characteristic of pudendal neuralgia (PN).  But I have also been diagnosed with sacroiliac joint dysfunction in the past. I have had physical therapy manipulations of the SI joint, worn an SI belt to stabilize my pelvis, and tried an SI joint injection with no relief.

While it seems most likely that PN is the correct diagnosis, I worry that maybe I have waited 7 long months for this appointment in Phoenix for nothing. Maybe the doctor will not think I have PN, then what will I do next? Did I make the wrong decision to go to Phoenix? I have prayed about this decision a lot and even pray now that if it is not the right direction to take that God will not allow us to go to Phoenix. 

It is easy when we have big decisions to think and worry that the final outcome is dependent on ourselves. That we could choose to do something that is outside of God's will for us.  But I am not so sure that is really possible for those who are called children of God. Proverbs 16:33 tells us,

"The lot is cast into the lap, but it's every decision is from the Lord."

God in his divine providence is working all things according to the counsel of His will (Ephesians 1:11). Nothing happens by chance. Even our "bad" decisions are being used by God to bring about His purposes.  Verses like this and Proverbs 16:9 and Isaiah 46:9-10 bring great encouragement to me in times of doubt and worry especially concerning decisions. 

If God is control of the outcome of the blind casting of lots, I know that I can rest assured that God is in control of my life! Whether I go to Phoenix and have a confirmation of my diagnosis of PN and get treatment or I go and find out there is nothing they can do to help me, I know God is working all things for my good and His glory (Romans 8:28)!

Process of Elimination

Last Monday I saw the pain management doctor who did my pudendal nerve injections. My pelvic pain doctor wanted me to see him again because he said there were other things he could do for my pudendal neuralgia. One of those things being a low thermal radiofrequency, where heat is used to "stun" the nerve. I am not interested in doing anything else, however, until I see the pudendal neuralgia specialist in August.

I did explain to the doctor that I have a lot of pain in the sacral area particularly around what seems to be the left sacroiliac joint. So he gave me a steroid injection in the left SI joint. The injection was very painful and the doctor thought it might be a good sign that this is what was causing my pain. I was hopeful that this might be at least part of my problem, but I didn't get any relief from it. I don't feel like it was a waste however because it at least ruled out sacroilitis as a cause of my pain. The doctors said that sacral nerve 2 and 3 run through the area that causes me pain and the pudendal nerve comes off of sacral nerve 2, 3, 4 so I think most likely this pain is refered from the pudendal nerve. The doctor said they can repeat the SI injection, but I see no reason to if it didn't give me any relief. The only bad thing is I won't be seeing the pudendal neuralgia specialist for another 4 1/2 months and there's not much more to try for pain relief until then. For now I continue to take Neurontin and go to physical therapy. But I feel like I have plateaued in PT so after a few more sessions I may give that a break as well.

I have been struggling with a cold/cough again for almost 2 weeks. I have learned that coughing is very bad for pudendal neuralgia. Each time I cough it causes me to tense my pelvic floor muscles and puts pressure on the pudendal nerve. Since stopping the birth control pills I have felt better I think. Not better overall, but better than I did on the pills. I am not waking up at night and my overall muscle aches seem to be a little better. Either that or I am getting more used to it.

Sometimes my heart wants to be discouraged. I feel like I am just beating my head against a brick wall. But I know God has been so faithful to me and He promises to continue to give me mercy for each new day (Lamentations 3:22). So I will continue to take it day by day because afterall that's all God says we need to be concerned with (Matthew 6:34).  I love this old hymn entitled Day by Day and I have the first verse sitting over my kitchen sink.  It was written by Lina Sandell who was the daughter of a Lutheran pastor in Sweden.  When she was 26, she accompanied her father on a boat trip and witnessed her father fall overboard and drown.  This tragedy affected her profoundly and inspired her to write hymns.

Day by day, and with each passing moment,
Strength I find to meet my trials here;
Trusting in my Father's wise bestowment,
I've no cause for worry or for fear.
He, whose heart is kind beyond all measure,
Gives unto each day what He deems best,
Lovingly its part of pain and pleasure,
Mingling toil with peace and rest.

Every day the Lord Himself is near me,
With a special mercy for each hour;
All my cares He fain would bear and cheer me,
He whose name is Counsellor and Pow'r.
The protection of His child and treasure
Is a charge that on Himself He laid;
"As thy days, thy strength shall be in measure,"
This the pledge to me He made.

Help me then, in every tribulation,
So to trust Thy promises, O Lord,
That I lose not faith's sweet consolation,
Offered me within Thy holy Word.
Help me, Lord, when toil and trouble meeting,
E'er to take, as from a father's hand,
One by one, the days, the moments fleeting,
Till with Christ the Lord I stand.

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 works...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.

Why does my pain change so much?

I found this great picture online and I thought some of my fellow medical background readers as well as pelvic pain suffers might like to see where exactly my pain is. 

One thing I will never be able to figure out is why my pain seems to change so often.  When my sitting pain first began in March my pain was mostly burning pain in my sacrum (the large triangular bone at the bottom on the spine, colored in blue on this picture) that increased when I sat and sometimes shot down into my pelvis.  My PT's and  doctors said I had sacroiliac (SI) joint dysfunction. The SI joint is marked in red. This joint normally doesn't move much, but during pregnancy the ligaments become lax and there can be movement in this joint causing some low back pain. Sometimes I would have pain as high as the SI joint, but most of the time is was lower more in the pink area, which is the sacrotuberous (ST) ligament which connects the sacrum to the "sit bones" (ischial tuberosity).  In October I started having a lot of pain around the "sit bones" (ishcial tuberosity), pictured in purple. After having physical therapy twice a week for 6+ weeks my sit bone pain is a little better, but just this past week or so I've started having a lot of sacral pain again (around where the ST ligament connects to the sacrum). When I have PT my obturator internus muscle is almost always tight as is my piraformis muscle.  Most of my pain is localized to the left side, although I do get pain in the obturator muscles and sit bone area on the right sometimes. 

I think the reason my sacral pain has flared again is because my PT has found that I have a sacral torsion, basically my sacrum is kind of tilted up on the left side.  So she has been manipulating the left side of my sacrum which I think has gotten my ST ligament angry which is causing my piraformis muscle to tighten.  When my sacral area is flared it hurts all the time whether I sit or stand and sometimes even when I lay down.  When my sit bone area is flared it hurts mostly when I sit.

So what is the source of my pain?  Good question.  Well, it is my understanding that nerves are what send pain signals to the brain, not muscles or joints. Now muscles can be injured thus causing the nerve in that area to send signal to the brain that the muscle hurts and joints can get inflammed causing the nerve to that area to alarm the brain that the joint hurts.  So is the source of my pain a muscle/ligament injury? Joint inflammation? or nerve inflammation or even entrapment?  That is what I wish I could figure out. 

I have two theories:

1.) Strangly enough the first PT I went to when I started having sitting pain thought I had right SI joint dysfunction and she manipulated my SI joint several times using an aggressive type of manipulation. At the time I had only occasional lower back pain and no sacral pain.  I think it's possible that PT over corrected my SI joint and hyper extended me causing me to strain some of the ligaments surrounding the SI joint including the left ST ligament.  I was 6 months postpartum and still breastfeeding at the time so my ligaments were still lax from the pregnancy hormone "relaxin".  This strain caused the muscles in my pelvis to tighten and spasm which then irritated and tightened around my pudendal nerve causing my pain with sitting. I have many biomechanical problems (such as the sacral torsion) and due to this and my abdominal weakness from having a baby, my core muscles cannot keep my SI joint/sacrum in alignment so there is constant strain on my sacral area ligaments causing the muscles to tighten and irritate the nerve. A viscous cycle. It's possible that physical therapy actually entrapped the pudendal nerve between the ST and sacrospinous ligament (colored in green) or in another area called Alcock's canal (which is located in the oburtator internus area).  If I have an entrapment the only hope to get better is surgery, and the success rates aren't great.

2.)  The vulvodynia I experienced during pregnancy was unprovoked. It hurt pretty much all the time and burned a lot.  From what I have read many people call this type of vulvodynia pudendal neuralgia, an irritation of the pudendal nerve.  While my vulvodynia greatly improved postpartum, I still had a lot of pain with intercourse (burning afterward) and pain around my vaginal tear site.  Once my periods returned I noticed around ovulation time I had a lot of irritation to wearing certain pants, especially jeans. This pain was similar to what I had in pregnancy just to a much lesser degree. I then went to pelvic floor PT due to pain with intercourse and maybe the PT further irritated an already angry pudendal nerve which brought my pain to a new level (causing me pain when I sat).  It's also possible that the return of my menstrual cycle brought my pain to a new level since my vulvodynia began with pregnancy which was a huge hormonal change.  The sacral pain could be from my SI joint dysfunction and an SI injection of steriods might help it (this will probably be something I pursue if the pudendal block doesn't help me or diagnose me).  In this case I don't think I could have a true entrapment, but rather just the neuralgia. Maybe with hormonal regulation (although I am scared of birth control as hormonal changes seem to aggrevate my pain), the right medications, and PT my pain would slowly (and I mean slowly) decrease.

Or is it a combination of these things in a series of unfortunate events (better known as God's providence :))?  I'll probably never know.  Well, for those that actually read this, there's your anatomy lesson of the day.  I have learned more about anatomy this past year than I did all through nursing school!

How it all began...

I am a Christian and a strong believer that God is in control of all things and has a purpose for my life.  If I weren't I don't know how I could live with chronic pain on a daily basis. I have created this blog because I enjoy writing and know that there is much suffering in this world.  I hope that by sharing some of my experiences others might find hope and encouragement.  Leave comments and I'd be happy to email with you.  Due to the nature of my condition I will be sharing things of a more adult content at times. So here's my "story"....

I have always been a very active person and I enjoy exercising  (running, biking, swimming, hiking, sports, etc).  I am a registered nurse and am pretty health conscious with my eating habits.  My husband and I looked forward to having kids and I thought I'd be one of those pregnant women you see running and really active.  In October of 2008 my husband and I stopped using birth control, the nuvaring, and hoped to become pregnant within a few months, although we weren't really "trying" yet.  In November I began having some pain with intercourse (which I had never had before) and some vaginal area swelling. I thought maybe I had a yeast infection (although I'd never had one before).  However, yeast infection treatments and even bacterial infection treatments prescribed by my OBGYN didn't work.  In December I found out I was pregnant (first month off birth control)! We were ecstatic.  As my pregnancy progressed so did my pain.  I became more and more swollen and doing the things I once enjoyed, like exercising, where almost impossible for me.  I was tested for all kinds of infections and everything always came back negative.  My OBGYN thought I had vulvodynia (pain in the vulvar area, which isn't really a diagnosis), although I didn't have the typical symptoms and since I was pregnant there wasn't really anything we could do treatment wise.  I spent a lot of my pregnancy searching online about my condition. Being in the medical field can be bad in that regard.  I thought surely there was a treatment we were missing.  When I was about 7 months pregnant I went to see an OBGYN specialist out of town who deals with vulvar pain.  She felt like my vulvodynia was pregnancy related due to all the hormonal changes and increased blood flow to the vulvar veins and that after childbirth I would return to normal.

 In August 2009 I delivered a healthy baby girl vaginally.  I had a 2nd degree vaginal tear, but no real complications in the delivery.  Post childbirth I had pain from the tear site, but like the specialist said my swelling was gone.  I was so grateful that God had taken that horrible pain away from me.  However, about 6 months postpartum I was still having a lot of pain with intercourse, running/jumping (I was trying to get back into exercising again), and sometimes wearing jeans were uncomfortable for me. I went back to my OBGYN who "burned" off some excess scar tissue build up from my vaginal tear and was referred to physical therapy because a lot of my pelvic floor muscles were really tight.  Looking back I wish I would have never gone back to my OB because the pain I was experiencing then was nothing to the pain I experience now. This PT specialized in pelvic floor dysfunction and felt like my muscles were overly contracted.  She also found that my pelvis was out of alignment and I had sacroiliac (SI)joint dysfunction and she thought that might be contributing to my pelvic floor pain (even though my pain was mostly with intercourse).  I had also had back pain from time to time (especially early on in my pregnancy), so she manipulated my SI joint and did a lot of manual stretching and used ultrasound to help break up some scar tissue I had from the delivery.  Things seemed to be getting better...intercourse was less painful and then in March 2010 I began having intense sacral area burning and pain with sitting (to the point I couldn't sit for very long).  This happened the day after I had been to PT and had an SI joint "adjustment".  I had also recently weaned from breastfeeding and had gotten my periods back. I began having some vaginal pain like I did when I was pregnant, however, it was usually from ovulation time until I started my period and I didn't have the intense swelling like I did when I was pregnant.  I thought the vaginal pain might be related to my hormones changing again, but the sacral area pain and inability to sit was completely new pain and I couldn't figure out what was going on.  My PT didn't know either.  I kept trying to go to her, but after every appointment my pain would only increase. 

In April I had an appointment with a physiatrist (physical medicine and rehabilitation doctor) who had some experience treating pelvic pain.  She said my pelvis was out of alignment and thought my sacral pain was due to that and the fact that my abdominal muscles were weak due to having a baby. (I don't doubt that I do have some core strength weakness and I know I have some pelvic floor weakness, but I am not a horribly out of shape person. I have lost all my pregnancy weight and continue to try and walk for exercise as I can).  I switched to a new PT in her office and tried doing a lot of stretching and taking higher doses of ibuprofen for several weeks but nothing changed.  In June my pain flared up to a new level.  I was becoming more and more "debilitated" I couldn't hardly do work around the house without a lot of pain with squatting and bending. My daughter was now 20lbs and it was really difficult to take care of her.  I also started having a lot of pain in my feet. If I had to stand for very long my feet just ached and burned horribly.  The physiatrist thought I was experiencing a type of central nervous system pain because I had had some degree of pain for such a long time now.  She wanted me to start taking a low dose antidepressant, Elavil, which is sometimes used for chronic pain.  I started taking 12.5mg at bedtime, but I was so exhausted all the time I could barely function (drowsiness is a side effect of Elavil).  I just felt like my previous PT must have injured me and the doctor must be missing a diagnosis. I had had a pelvic/lumbar Xray, but it was normal. I felt like I needed an MRI, but the doctor didn't think it was necessary. I continued taking the Elavil and doing PT, but nothing was changing. My life felt like it was spinning out of control. My husband and I were in an application process to try and go overseas to serve the Lord as missionaries, but I couldn't even sit for 5 minutes without a constant burning pain. I couldn't do any of the things I enjoyed anymore not to mention even hardly take care of my family anymore.

I have seen multiple specialists including a neurologist, rheumatologist, and urognyocologist. I have had lots of bloodwork and imaging tests but everything is "normal". I have tried several different medications, but Neurontin has been the only one I routinely take that helps. I have had an S1 nerve root injection, an SI joint injection, and 2 pudendal nerve blocks.  The pudendal nerve blocks took away most of my pain for a few hours so my doctor believes I have pudendal neuralgia. Unfortuantely there are not a lot of successful treatment options for this condition. I am awaiting a consultation with a pudenal neuralgia specialist in August 2011 and while I do not know that I will ever be painfree again in this life I am striving to find my joy and peace in God alone. He is my reason for being and no matter what this life holds for me I rest knowing that he is working all things together for my good and His glory (Romans 8:28).

 
"In this (that God has caused us to be born again to a living hope through the resurrection of Jesus) you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith-more precious than gold that perishes though it is tested by fire-may be found to result in praise and glory and honor at the revelation of Jesus Christ." 1 Peter 1:3-7 (some parts omitted and paraphrased)