2013 Year End Review

Is it just me or has this year gone by fast? It could be that I spent the first several months of the year recovering from arthroscopic FAI/labral tear hip surgery, but either way I think as they say the years do seem to go by faster as you age!

2013 has been a year of great blessing as I was finally awarded disability after a 2 year wait, but it's also been a year of great disappointment and hurt as two full-time church ministry positions (one we had been waiting on for 8 months) fell through for my husband and he continues to work the horrible, long hours and low pay of retail management. The past 3 months we have struggled to understand what God is doing in our lives or what He wants us to do, but we continue trust in His mysterious providence.

I've been a poor blogger this year thanks to headaches that began after I did an intense juicing detox this past summer (in hopes of it helping with my pain levels). I had a headache every day for 2 months that no medication, rest, or alternative medicine would touch! I continue to get them periodically now, but I am grateful to God I no longer have them every day. I do not know what caused the headaches, but my theory is that the detox and diet elimination (no sugar, gluten, or dairy) I tried for 3 months was very labor intensive and the long hours cooking and standing caused muscle compensation and strain resulting in headaches. I continue to try to eat as "clean" as I can because I do think diet affects the way we feel (though I am confident it is not the soul cause of my chronic pain), but I no longer am adhering to such a strict diet because my body could not handle it!

I am now 1 year post-op from hip surgery. In the last 3 months I finally feel like some of my surgical pain and muscle soreness has gotten better, but I still struggle to lay on my left hip for very long and I still have major muscle tightness (particularly in my IT band, adductors, quadricep, and psoas - though it's hard to tell how much of that is just from long standing muscle compensation and pain). My hip pain was not my worst pain pre-op and most days it is still not my most debilitating symptom. But I do struggle with hip pain if I am on my feet or walking a lot. Overall I would say that I did not see the effect from surgery that I had hoped (namely less overall pelvic pain and improved ability to sit), but I do not regret having the surgery. There were some scary days early in my recovery when it seemed I might have developed full blown CRPS, but while I do have symptoms of central nervous system sensitization I am grateful they are not as severe as they could be.

I have not done a lot treatment-wise this year other than occasional physical therapy visits, self PT (I've found the Therawand to be helpful for pelvic floor pain as well other tools mentioned here), massages (I've found I function much better when I get bi-monthly massages), and of course medication. The first 2 years of my debilitating pain I tried many invasive treatments that only caused my pain to flare and did nothing for my overall pain. Until there are major changes in diagnostics and treatment for pelvic pain I plan to continue to focus my efforts on pain management in the future.

I have spent very little time researching causes and treatments for my pain this year and have for the most part stayed away from forums and message boards. There is definitely a time and need for those things, but for me it has been good to focus on the life God has currently given me this year instead of worrying and wishing for a better quality of life. My daughter is growing up before my eyes so I've been trying to be as involved in her life as I can which leaves little energy for things like pelvic pain forums and blogging (one day my daughter will be in school and there will be plenty of time to work on my writing!).

Ever since my pain became debilitating and I began to accept my new life my biggest prayer was that if it was God's will for me to have chronic pain that He would help me get to a place where I could manage my pain and have a decent quality of life. In my mind I thought that would mean I would have pain managed by only occasional ibuprofen or Tylenol and I could sit for a couple of hours before having to stand up due to pain. I am FAR from those standards of pain management, but if I am very careful to stay within the limitations I've learned over the years including: very limited sitting, limited walking, taking medications, resting frequently throughout the day, getting frequent massages, stretching, doing physical therapy, taking warm baths, etc, many days I am able to care for my family, avoid pain flares, and have a decent quality of life (though very different from most 30 year old mothers).

I still miss my old life, struggle to fight for joy in the Lord, and am often lonely, but I am very, very grateful for how God is sustaining me in my journey with pain. 2013 brought many surprises (including a new puppy) and graces and because of the hope in knowing Christ as my Savior and Lord it is with joy that I can look forward to 2014 and what the God has in store for our family. I hope you've come to know that peace and hope and well. If not, feel free to email me at purposeofpain (at) gmail.com I'd love to talk with you more!

Lots of Prayers Needed!

Sorry for the lack of posts lately. This last month my parents have been renovating the kitchen of the house we rent from them. It should be finished in the next couple of weeks and what a blessing it will be! My daughter is finished with preschool for the summer, and so any extra energy I have has been going toward caring for my family and enjoying the warmer weather before it becomes too hot to be outside!

Tomorrow is a BIG day, though, and I sure could use some extra prayers. After 20 months of wading through the disability process and being denied twice, I will have my hearing in the morning. My attorney thinks I have a good chance of being granted disability since my pain affects my standing, walking, and most importantly sitting ability.  But I know that anything can happen and it's really in the hands of the judge who will be hearing my case. If I am not given disability benefits then there would not be any reason for me to reapply unless my condition worsens. Please pray that I will explain my pain/limitations well , that the judge will be empathetic, and that he will see how my pain prohibits me from working. Pray that we will trust God no matter what the decision is. (We will not get a response for 30-60 days).

I have continued to see myofascial release therapist for the last 3 months, but I am not seeing any real improvement. The biggest issue is that this therapist is not trained to work on the pelvic floor and without that my sitting ability is not likely to improve. I am not sure what to do honestly. I have tried almost every therapist in this area that I can find who has any experience at all in the pelvic floor. I continue to try to research and call other therapists in this area, but it seems I am out of options. It's hard to understand why God would put us in an area without knowledgeable health care providers to help me, but for some reason He has not allowed us to leave this area yet. It is extremely frustrating and discouraging and were it not for Christ I would despair (and rightfully so!). Please pray against the temptation to worry and despair. Pray that God in His timing would provide a way for me to manage my pain better or preferably that He would take it away!

I am 9 days shy of being 5 months post-op from hip surgery for FAI/labral tear. The last few weeks I have been dealing with a lot of operative side knee pain again. I have had problems with this knee on/off for several years, but especially after surgery. My PT (that I travel 2.5 hours to see every 4-6 weeks) thinks the knee pain is due to my quad and glute weakness which is causing my femur to rotate internally when walking. Also my IT band is extremely tight and overworked due to extreme weakness in my adductors/vastus medialis. Unfortunately I struggle to do very much strengthening because it increases my pelvic floor burning. Lately my knee pain has made walking and even standing painful. I've been using KT tape (which helps some), anti-inflammatories, foam rolling, warm Epsom salt baths/heat, self-massage/trigger point release, but I am still struggling. I am trying to get my insurance to cover a SERF strap, which my PT thinks may help with the hip internally rotating, but please pray that when I travel to see my therapist this week she will have some other tips to help me get this knee pain under control. Also pray that she will help me find some exercises in general that I can tolerate better in order to regain some strength.

Thank you for praying for our out of town trip back in April. It was not easy, but God gave great grace and allowed us a good visit with my husband's family. Also thank you for praying for my husband's job interview. Sadly, we are still waiting to hear whether my husband will get this promotion or not (he should finally hear this week, Lord willing), but we did learn that even if he gets this promotion the pay will only increase minimally. So he will actually work more hours for less money overall, due to changing from an hourly to a salaried position. This is of course disappointing, but we know God is in control of this as well and He knows what we need. Pray we would trust God to provide and that He would provide either through disability or a different job for my husband.

It seems the Lord has been and is continuing to teach us patience. I know I am far too often weary of having to wait, and I complain and worry about the trials we face. But I pray God will help us hold firm to Him till the end and that we would fix our eyes on Him as we wait.

2 Month Post-Op Hip Surgery

I'm now a little over 2 months post-op left hip scope for FAI/labral tear. This last month has gone by quickly. I'm now off all assistive walking devices (since around week 5.5 weeks) and doing most of my "normal" limited activities. I still struggle with squatting/getting down on the floor, walking more than a couple of blocks, standing for long periods, laying on my operative side (though this is slowly improving), and internal/external hip rotation. There are still occasional movements that cause me to gasp in pain, but hopefully with time and therapy these will get better.

Last week I finished an intense week of therapy out of town again. I haven't felt as much improvement as I usually do and I think that is likely due to the fact that I overloaded myself while I was there - seeing two doctors, driving back and forth almost 30 minutes to therapy (which is extremely hard for me) with sometimes multiple therapy sessions in a day - and my therapy was a little more aggressive. Sadly, I continue to have all my pre-op pain in addition to some new pain brought on from the surgery. I am trying to be patient and am praying that with time some of my old pain, especially the sitting pain, will diminish, but it seems like most of the people I have known who have had relief of their pelvic floor pain with hip surgery saw at least some improvement in pain within the first couple of months.

This past month my hip rehab has been much slower. I had a stomach virus which knocked me out for over a week and I continue to struggle to do therapy much outside of the pool without an increase in pain. I continue to have A LOT of muscle dysfunction and pain. My abdomen literally has knots in the muscles and I often feel crampy. I've tried self massage, warm baths, professional massage/manual therapy, moist heat, TENS, and stretches but nothing seems to help much. The more I am upright trying to walk around and do light work around the house and sit for short periods the more my thoracic area and lower lumbar area on the operative side screams at me. It's most likely my psoas and quadratus lumborum that are extremely spasmed from all my glute and hip weakness and sacroiliac joint instability. It literally feels like a stabbing pain around T12 (right about where my ribcage ends). I had these pains pre-op, but they are definitely intensified post-op and it is frustrating because I had them better managed I feel like back before Christmas. The hip PT feels like most of my pain is muscle related and that I have better movement through my hip, but that my muscle tightness and pain are limiting me.

It's discouraging and not what I hoped for, but I'm thankful for what I can do and am continuing to press on by the grace of God.

Praises:

• I no longer have any more tingling in my foot/leg than I did pre-op, though I do continue to deal with symptoms of central nervous system sensitization, a pain syndrome causing hypersensitivity and allodynia (painful responses from non-painful stimuli).

• My knee pain is much more tolerable. I still have a lot of weakness, but my knee is not subluxing or causing me to scream out in pain when I kneel down.

• The areas of numbness on my thigh seem to be getting smaller though I do have some scar tissue around my surgical sites which are creating pain when trying to lay on my left side.

Prayer Requests:

• I have found a local therapist which does myofascial release, a more alternative therapy. Since I have not had any real success with my other local options please pray this therapy might help me work through some of my post-op muscle pain and help me manage my overall pain better/improve my quality of life.

• If it is not God's will for me to get better,  please pray that I would not continue to progressively get worse. Ultimately I want to get stronger, of course, but it would be wonderful to just get to a place where I can function decently (care for my family and attend occasional social functions and church) under my limitations and I am not constantly flaring.

•  Pray that I would be able to get this muscle pain under better control so I can tolerate home therapy better.

• Continue to pray that God would provide for our needs - spiritually, physically, and financially - and that we will trust Him no matter the answer to our prayers.

Thank you for your continued prayers and support.

One Month Post Op Update

Well my weekly post-op updates didn't quite go as planned, sorry about that! Thank you to those who have been praying (prayer requests at the end of this post).

Tomorrow I will be 5 weeks post-op. Recovery is slow as I knew it would be, and there have been lots of ups and downs. I just got back from 4 days (5 sessions) with my wonderful pelvic floor PT and hip PT out of town. I feel so much better when seeing them, but it is very disheartening to return home knowing that I will go another 4 weeks before I get the PT I need. I just feel like if I had access to consistent good therapy that I would be able to manage my pain much better, but apparently that is not God's plan for us right now. 

Here's a little recap of the last few weeks:

Day 16-21 post op: I experienced a big flare up in my pelvic floor pain/burning. I couldn't even sit for 5 minutes without being on fire! I feel like it was due to being too aggressive with my glute sets and bridges while trying to strengthen my hip. I backed off these exercises for a while and it finally calmed down some thankfully. This is frustrating though because I need to strengthen, but I know I am just going to have to be patient. At three weeks post op I went to see my hip PT out of town. I saw a major improvement in post-op hip related pain thanks to lots of manual therapy. My quad was really angry prior to seeing the PT. She didn't add any new exercises since I was still struggling with an increase in pelvic floor pain, and encouraged me to get in the warm water pool as much as possible.

Week 3-4 post op: I got a massage (right now I am trying to do bi-weekly massages) - this helps with all my overall muscle pain due to the dysfunction and compensation. I also went to the warm water pool 4 times this week without any real flare-up in pain. I tolerated my hip exercises much better in the water than I did on dry land.

Week 4-5 post op: I began to start taking steps around the house without my crutches or with just one crutch. My hip PT didn't really want me to use only one crutch due to fear of worsening my muscle compensation so she suggested I use a cane. I don't feel like the cane really helps that much so unless I am walking outside my house, or unless it is the end of the day, when I often begin to feel like I can't stand up on my own anymore, I've just been walking without an assistive device. I'm glad to be walking some again, but I am experiencing a good bit of muscle pain. A lot the muscles that support my pelvis are so tight they feel like bricks. The muscles that are the worst are my psoas, rectus abdominus, quadratus lumborum, and the erector spinae (which are more superficial - to the surface of the back - than the quadratus lumborum and psoas).

Image source



 

Image Source

I've had problems with these muscles for a long time now, but my psoas and rectus abdominus got so bad this past week that it felt difficult to stand up straight or even eat as my abdomen was so swollen/irritated. I'm not sure what exactly caused this, but I think that maybe I was overly aggressive trying to tighten my transverse abdominus (TA), to support my core, while trying to do my pool exercises.  Since I am very weak, due to years of dysfunction and worsened due to recent surgery, it is easy to recruit other muscles . My pelvic floor PT said that you only need to contract the TA to about 30% of maximum contraction. This is much easier for me to do lying down than standing up in a pool though!

I've also been having some significant knee pain. Getting down on the ground to play with my daughter is still difficult and the knee is also painful when walking. My hip PT gave me a SERF strap to borrow to see if it helps with the knee pain. So far it has I think, but I hope the knee pain will lessen once I build back some quad strength.


Praises:

• My circulation issues seem to be getting better. I still have some tingling in my foot and after standing for a long time occasionally my surgical side foot is more red than the other. I saw the surgeon for my 1  month follow-up and he and the PT are hopeful that with time and full-weightbearing this with go away. Although they have bought mentioned Complex Regional Pain Sydrome as a possibility. Continue to pray that this will resolve at least to my pre-op normal.

• My bandiad rash finally went away!!

• Praise God I have access to a warm water pool (for a price we can afford!) and that it provides reduced pain levels, even if for only a few minutes.

• Praise God I am regaining the ability to walk around the house more. Please pray that this continues and that the knee pain will go away as I gain more strength. 

Prayer Requests:

• That I will be able to get the muscular tightness and pain under control so I can continue to strengthen. The main goal of this surgery was to regain strength, please pray that in time I will be able to do this.

• Pray that God will provide a way for us to get good physical therapy more consistently. The only way we see this happening is if we move. My husband continues to look for jobs in larger cities where I would have access to the specific medical care I need. If it is not God's will for us to move, please pray that He will help me learn how to manage my pain with the resources I have locally.

• I continue to have some numbness on my upper and outer thigh either from surgery or from the nerve blocks I received in recovery. These areas are very sensitive if I rub up against them or try to lay on my left side. Pray this will decrease in time (sooner rather than later!).

• Pray that we would rejoice always that I have a living hope and a future in Jesus! This is a daily battle as chronic pain wages heavily on us.

I was reading in a devotional Jesus Calling by Sarah Young that a sweet new friend with chronic pain gave me. (I do not necessarily advocate for reading this devotional as I feel the author's take on "hearing from God" and writing in the first person as Jesus is a bit presumptuous, but as with any devotional book one must take the author's writing as just that - the author's writing. So if you read "Jesus Calling" take Mrs. Young's writings as a grain of salt and be sure the majority of your spiritual food is coming from God's true word - The Bible.) Today's reading was so very appropriate as I am tempted to worry about the future and how I will ever get my crazy tight muscles under control (and especially without good PT!). Here is a portion of today's reading:

I am your Strength and Shield. I plan out each day and have it ready for you, long before you arise from bed. I also provide the strength you need each step of the way. Instead of assessing your energy level and wondering about what's on the road ahead, concentrate on staying in touch with Me.... Refuse to waste energy worrying, and you will have strength to spare. (Psalm 28:7, Matthew 6:34, Psalm 56:3-4) 

2 Week Post Op FAI/Labral Repair Update

I'm finally back after my left hip arthroscopy to correct my femoroacetabular impingement (FAI) and labral tear. (For pictures and a more thorough explanation of labral hip tears/FAI click here)  I have had some bad days, but in some ways I am doing better than I thought I might be at this point.

My surgery was delayed 2 hours and I was the last case of the night at the outpatient surgery center. When I met with my surgeon pre op I was under the impression that I would have the opportunity to pick from a few different several different nerve blocks pre op to help with post surgical pain. But when the anesthesiologist came in to talk to me he said they only do two types of blocks - femoral nerve block and a lateral femoral cutaneous nerve (LFCN) block in recovery if post op pain is uncontrolled. He warned me that these blocks would not help with "bone" pain - pain coming from inside the hip joint only with surrounding soft tissue pain.

My recovery experience was horrible. I don't remember a lot because apparently my pain was uncontrolled and they had to give me a lot of medication. The anesthesiologist also gave me  a femoral and LFCN block, but I remember feeling a lot of pain like I had never felt before and since the block didn't help much other than to numb my leg making walking/moving difficult, i assume my pain was coming from inside the joint. My nurse was not the nicest. I was extremely hoarse from the intubation tube (this took a good week to get better) and she just sat at the end of my bed and said "huh" over and over. They didn't let my husband see me for a long time and I remember at one point waking up and seeing another patient and their spouse looking at me and the man said, "you're in a lot of pain, aren't you?" Yes, I was. When they finally did let my husband back he told the nurse I was in a lot of pain (I guess I told him I was or he saw it in my face - thankfully I don't remember this experience much) and the nurse said, "well I've already given her enough medicine to knock out a cow!" This nurse obviously wanted to get out of there. I don't blame her. It was 9pm on a Friday night. I never had gone to the bathroom post op so she rushed me into the bathroom and gave me about two minutes. When I hadn't gone yet she said, "well if you haven't gone in 6 hours just call your doctor." I told my husband to ask for her name. Needless  to say I have reported my experience. My level of consciousness and pain level was too poor to be discharged. I should have been admitted to the hospital overnight.

Thankfully we only had a 15 minute drive to my grandmother's house. My husband was able to use her wheelchair to get me into the house and I slept on her couch for the next two nights. The first night I had to urinate about every 1-2 hours as I had such bad urinary retention from the anesthesia I guess. I was itching horribly, and  I would shake like crazy every time I had to get up to go to the bedside commode (it's a good thing I was staying at my grandmother's where I had access to these things!). Benedryl and pain meds helped me get through the night. We also rented a ice system machine called a "Game Ready" (more about this later) that cycled on/off every 30 minutes. My poor husband "slept" in the recliner between my bathroom calls and filling up the Game ready.

We met with the doctor and his nurse the next morning (he came in on Saturday to see his out of town patients). I told them about my experience and that my pain still was not controlled well. They gave me a few new prescriptions, took off my bandage and the surgeon explained what went on during the surgery.

I had an anterior superior labral tear which was repaired with two anchors as well as some posterior labral fraying that was smoothed down.

left anterior labral tear

 

labral tear repaired

The most common cause of a labral tear is femoroacetabular impingement. I had a small CAM deformity on at the head/neck junction of the femur which was shaved down. One of my biggest pre-op concerns was finding out why I had a labral tear since groin/hip pain was only one of my many symptoms. When I asked the surgeon this pre-op he felt like it was likely due to the "way my hips are made" (i.e. FAI). I was concerned, however, after reading this article that the cause might be ligament laxity (since some PTs have felt I have some widespread joint laxity) or due to biomechanical issues and muscle imbalances including lower crossed syndrome (which I have). Lower crossed syndrome often can cause an anterior tilt of the pelvis (which I have) causing increased weight bearing on the anterior labrum and subsequent tearing. When I saw the surgeon the day after my surgery I asked him if he thought my CAM was enough to have caused my labral tears and he said, "no". I want to talk to him more about this at my one month follow up because I am concerned that if the cause of the labral tear is not fixed then there is a greater likelihood of re-tearing. I sure hope this surgery wasn't a waste. Due to my sacroiliac joint dysfunction and pelvic floor pain correcting the lower crossed syndrome has become almost impossible, though my goal with this surgery was to hopefully be able to regain muscle strength in my left glute and leg. Only time will tell if this is possible and if the surgery was beneficial.

 left CAM deformity

CAM deformity shaved

In addition to the labral repair and CAM shaving the surgeon also found that my ligament terres was enlarged. He was able to decompress this with heat and there was also a good bit of inflammation in the pulvinar tissue which lines the acetabulum. The fact that my ligament was so irritated and enlarged concerns me again that the cause of my labral tear might be more biomechanical or that I could have an underlying connective tissue disorder, which is something I have thought for some time now and may be something I investigate further in the future. In order to perform the surgery the joint capsule has to be opened up. Sometimes they leave the capsule "open" after arthroscopic surgery, but thankfully my surgeon closed the joint capsule since I have some ligament laxity .

Enlarged ligament terres

Inflammation of pulvinar tissue of the acetabulum

 The first three or four days of my recovery were pretty rough. We unfortunately chose to travel home on post-op day 2 and my anesthesia was wearing off so the 2.5 hour trip home was difficult. The high doses of narcotics made me extremely emotional/panicky/depressed and they didn't help the pain that much. Ironically once I stopped taking the narcotics and stopped icing I actually felt better. Most people really like the Game Ready icing system, but for me the ice seemed to make my circulation and pain worse (more on this below). A low dose muscle relaxant at night has actually been more beneficial for me and I am taking higher dose anti-inflammatories as prescribed for the first 3 weeks post op. I will be on crutches with 50% weight bearing for at least the first 4 weeks and I cannot flex my leg past 90 degrees or externally rotate my leg at the hip.

At 2 weeks the surgical pain is tolerable unless I am up too long or doing PT exercises.  I drove today for the first time and am able to care for my daughter for very short periods of time. The biggest struggle is that I cannot carry anything with my crutches, bend down, or even reheat food for myself. I had 5 small incisions and got my stitches out on day 10.  Everything seems to be healing nicely except I did develop an allergic reaction it seems to the band aids I was using as I have sensitive skin. I am hoping this goes away soon and then I look forward to hopefully getting in the warm water pool to do some therapy exercises. This is one place where I usually experience less pain. I got a massage on day 10 and tolerated it well, though my therapist was more gentle than normal and stayed away from my left hip. The nerve blocks I had post op took about 7-10 days to resolve. I still have a little big of abnormal sensation on my upper thigh, but nothing I couldn't live with if it doesn't fully resolve. The first three days post op I couldn't move my leg and I felt like I would never walk again, but thankfully my range of motion is improving daily.

My hip at 2 weeks post op with band aid rash

Unfortunately my chronic pelvic, sacral, low back, pain and leg burning has remained the same. I am very thankful I am not any worse though. My biggest concern is that my operative leg has appeared darker in color at times than my right leg. My feet have burned ever since June 2010, but I have noticed that they are more flared up and my left foot sometimes feels like it is asleep/tingling. The doctor's nurse said this could be due to the fact that I am not bearing enough weight or it could be complex regional pain syndrome. Due to my previous "diagnosis" of central sensitization I have been concerned about CRPS for some time. But my pain in my operative leg is not grossly abnormal so I am praying that with time and therapy my leg/feet circulation and burning will get better.

It takes professional athletes 4-6 months to recovery from this surgery and return to their pre-surgery athletic level, so due to my complex and chronic pain I know to expect that long and up to a year (according to my surgeon) to see full healing. Already after only laying around for 2 weeks I notice more muscle atrophy so it is going to take a lot of work to rebuild my strength. Patience is key, as I knew it would be, and I am still very early in my recovery.

Praises:

• I am able to use normal crutches without too much difficulty or increase in any previous chest/underarm pain that I've had in the past!
• My pudendal neuralgia/sacral pain doesn't seem to have been worsened because of the surgery (i.e. I can still sit about the same amount of time).
• My mother did well with her surgery and seems to be healing nicely. Our extended family and church has been a great support to us.
• My GI issues have been much more tolerable! Please pray this continues.

Prayer Requests:

• That my circulation will return to my normal pre-surgery level soon and that the burning in my feet and legs will lessen.
• Pray that my rash goes away soon so I will be able to do aquatherapy
• Patience and peace - that I will trust God is in control and have joy in Him even when the days are difficult
• That I will regain the ability to walk and stand without difficulty (this is especially important since I am unable to sit for long periods of time).
• That some of my chronic pain might eventually resolve with the appropriate therapy and pray that I will be able to get good quality PT as often as possible (I have to travel for this which is difficult for our whole family).
• Continue to pray that God would one day allow my husband to get a job in a bigger city where I could have better access to pain management and therapy treatments.
• Continue to pray for strength for my husband as he cares for us and keeps the home running. He is such a gift from God!

Whew! Sorry for the overdue update. Hope to get back to more regular blogging in the days to come. Thanks for praying and caring.

New Cause of Pain after 4 Years: My Hips?

Sorry I've been a little more quiet lately. This past week I've been struggling with a stomach virus that's been lingering leaving nausea and stomach cramping as my companion. Actually, I'm not sure if it is related to the virus, or the fact that I've had to increase some medication due to burning in my legs which is relatively new. I've been struggling to use the computer for long periods to type because I have to lie down and I cannot stand the laptop on my legs. Lying down is the only way I usually get any relief of my pelvic pain, but now even that has become painful as it hurts when my legs touch each other while lying on my side and I cannot lie on my back (due to my sacral pain). It's been a discouraging week to say the least.

I've been struggling with burning in my groin and upper quadriceps off and on ever since I tried the intense alternative treatment back in May, but this burning throughout my legs and pain when lying down is pretty debilitating. It could be due to muscle tightness caused by compensation from all my pelvic dysfunction, but I feel like it's probably due to central sensitization (this is a link to a short video clip explaining what happens in central sensitization) unfortunately as pain medication doesn't even touch the pain. Next month I am going to try some drug infusions to hopefully help calm down my central nervous system and get the pain under better control.

Please pray that my insurance company will pay for these infusions. My doctor has submitted a letter of medical necessity and I am waiting to hear back from them. Please pray that the infusions will work to help manage my pain better and the side effects will be tolerable. If it does help, this is something I can do on a regular basis to manage my pain. Praise God I found a local pain doctor willing to try this!

Thankfully my doctor is willing to give us a "deal" (though still not cheap) so we feel like we need to go ahead and try the infusions as my pain is just becoming worse and worse. We will battle the insurance company after the infusions if we have to. I am concerned because the dosage this doctor is planning to give me is small and the infusions will only be for 3 days (2 hours each day) so this may not be enough to tell if the medications will help me. But it is the best option I have at this point without traveling across the country to a specialist who deals specifically with this type of pain syndrome.

Three weeks ago we visited a hip specialist and I had an MRI of my left hip (where most of my pelvic floor/sacral pain is). Interestingly they found some damage to my hip - a labral tear and ischiofemoral impingement. I was surprised to say the least, after 4 years of going to doctors and never finding anything concrete on scans. What does this mean? Was this the actual cause of my pain to begin with? I don't know, but it's possible. There is a study (read abstract on page 29 of 32) being done out of New York that suggests a correlation between labral hip tears and pelvic floor pain. However, my case is complicated due to the central sensitization and while arthroscopic surgery can be done to correct the labral tear it is possible that even with surgery my pain could become worse if my central nervous system is driving the pain. It's also important to know the cause of the labral tear, which mine seems to be congenital according to the specialist, but I also have a degree of hypermobility in my joints and this could also lead to a poor surgical outcome. I plan to look into this more in the coming months as well.

I did have a hip injection that relieved my hip pain (which is minimal honestly compared to everything else) for several hours. (I have wondered a little if the hip injection is what set off the burning in my legs, but the injection was only in one hip and my pain is bilateral and the burning didn't start until about 3 days after the injection - but then again anything is possible with central sensitization it seems!) I feel like it is possible that the hip damage has caused all the muscle dysfunction and nerve irritation/pudendal neuralgia in my pelvis and that if the hip was repaired and I had consistent good physical therapy (which is a problem where I live) then over time some of the other pelvic pain might resolve. Of course until I get some of the burning in my legs calmed down I do not know if I feel comfortable pursuing a surgery.

We are traveling this week to see the hip specialist again and I will be getting an MRI of my right hip (I actually have more true hip pain in my right hip) as the specialist thinks I have a labral tear in my right hip as well. I have a lot of questions to ask her and will see their PT as well as my pelvic floor PT. Pray that God will give us wisdom as we seek answers to these questions.

We continue to need prayer that our hope would be in God, especially  for me in these hard days, and that I would call out to Him for grace to sustain me in my physical weakness. And most importantly that we would truly trust Him.

And of course we covet your prayers for healing and if not healing then better days and a better understanding of what is causing my pain and the ability to get treatment to help me.

Recently a Facebook "fan" recommended a sermon to me by Pastor Timothy Keller entitled "Questions of Suffering" that is very convicting. He talks about the "Why?" question of suffering saying that we must:

• Avoid the pat answers of "why do we suffer"
• Embrace living without an answer to "why am I suffering"
• Anticipate the final answer

Listen to it here and be encouraged!

The Pelvic Messenger

I wanted to share with you all a great resource for readers who suffer with pelvic pain called The Pelvic Messenger, a free Internet radio broadcast on BlogTalkRadio. The Pelvic Messenger hosts some of the world's leading experts in pelvic pain and gives listeners the opportunity to call in and ask questions. You can find and listen to past shows here where a variety of conditions and topics are covered that pertain to many pelvic pain patients.

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.

Valentine's Day Without Sex?

(A revised post from last Valentine's day. I can't believe it's been a year since I wrote that post. Time flies whether you are having fun or not!)

Valentine's Day often comes with a mix of emotions for the pelvic pain sufferer, or at least me. It's a holiday with a very confusing history that has become commercialized to encourage lust love. For many couples, V-day activities include going out to eat and having sex: two activities that seem so simple yet often bring dread and pain for those with pelvic pain. It's hard not to feel a little sorry for yourself when the world is shoving lingerie and "KY Intense" down your throat and all you can do is scrounge up enough energy to get your loved one a card.

As a Christian wife who loves my husband and who wants to enjoy intercourse in it's proper bounds (Hebrews 13:4), it's hard not to feel entitled...that I deserve to be able to please my husband like "normal" women. Unfortunately well meaning Christians often produce even more feelings of guilt when they declare that a marriage without sex will fail or that our husbands will be tempted to turn to pornography if their "needs" are not met. But, where in the Bible does it say that every marriage relationship will enjoy blissful sexual relations? It's just not promised.

When tempted to feel like a martyr, I am reminded of the parable in Luke 9 about the cost of following Jesus.

As they were going along the road, someone said to him, "I will follow you wherever you go." And Jesus said to him, "Foxes have holes, and birds of the air have nests, but the Son of Man has nowhere to lay his head." To another he said, "Follow me." But he said, "Lord, let me first go and bury my father." And Jesus said to him, "Leave the dead to bury their own dead. But as for you, go and proclaim the kingdom of God." Yet another said, "I will follow you, Lord, but let me first say farewell to those at my home." Jesus said to him, "No one who puts his hand to the plow and looks back is fit for the kingdom of God." v. 57-62

David Platt in his book Radical says, "Plainly put, a relationship with Jesus requires total, superior, and exclusive devotion. Become homeless. Let someone bury you dad. Don't even say good-bye to your family." He points out that we are not even guaranteed that our basic need of shelter will be met! So why do we expect our basic wants and desires of sex, health, family, love, and happiness will be met? Jesus doesn't promise these things if we follow Him. In fact He promises just the opposite, this life will be full of tribulation (John 16:33) and we must deny ourselves (Luke 9:23). 

These are radical words. When I look at what I am "sacrificing" it seems pretty small compared to having nowhere to lay my head or not even saying goodbye to my family before going out to dangerously share the gospel! It's not that God doesn't want blessings for us, but rather our treasure is found in heaven not in this world (Mark 10:21). Does knowing God and serving Him mean more to you than the fleeting pleasures of this world? (It's often a daily battle for me!)

If Valentine's Day has you feeling down in the dumps because you are single or away from your loved one or unable to show love in the way you'd like to the husband God has given you, remember the greatest display of true love ever given, and find your hope in Him!

"This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins." 1 John 4:10

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   

To Take Pain Meds or Not?

That is the question for many of us suffering with chronic pain, isn't it?  I went to see a new pain doctor last Thursday. Surprisingly I made the 5 hour round trip in one day without too much flare up, although today I am feeling the effects of the trip and a busier weekend than normal for me. 

So I told my story again to this new doctor. Every doctor has their opinions which is always interesting. She thinks a spinal cord stimulator, as suggested by my previous pain doctor, is not a good idea. I am young and it is likely that within 5 years my brain will find a way to work around the stimulator, which "tricks" your brain instead of feeling pain you feel a tingling sensation. She also thinks pudendal nerve decompression surgery is not a good idea - what pain doctor does really recommend surgery? They see hundreds of failed surgeries every year. She really thinks since my debilitating pain began after aggressive sacroiliac joint  manipulations that maybe I can get some relief with the correct type of manipulation to get my pelvis back in alignment. This was encouraging since in 2 weeks we travel to Gainesville, GA to see one of the nation's best PTs in hopes that I will be able to avoid surgery and that the proper alignment will get my pain to a more tolerable level. I am of course doubtful however because the pain has gone on for so long now and I have already seen 6 PTs who were unsuccessful in fixing my pain.

This new pain doctor prescribed a new pain medication for me Nucynta  (don't tell me all your bad experiences with this drug!). I was previously trying to manage my pain with Neurontin, Baclofen, and various other pain medications on an as needed basis. This doctor thinks I should take Nucynta twice a day and in between as needed to try to get my pain under control. She thinks it is better to take medication and be up doing things than to not and lay around on the couch. I'd like to think she is right, but if my root cause of pain is nerve entrapment or SI joint dysfunction then the pain medication will only mask the pain and I will do things (such as sitting, bending, twisting, etc) that will really make the root of the pain worse. The other problem with this medication is that it is brand new so it will cost us around $76 a month. Thankfully for the first three months we found a prescription saving card making it only $25.

This medication is supposed to have the effectiveness of some of the more powerful narcotics with more tolerable side effects. As with any opioid drug there is the potential for needing more and more of the medication to get the same desirable effect over time because our body builds up resistance. The way the spinal cord and brain perceive pain is a mysterious thing. While the nurse in me knows there is a root cause of my pain (likely sacroiliac joint dysfunction and pudendal nerve entrapment) I have to get over my preconceived notions about pain medications because the pain itself has become a problem. Pain in the Mom, a fellow pudendal neuralgia/chronic pain sufferer, wrote an interesting post here about how pain is often the problem.

So I am going to take the medicine as long as I can tolerate the side effects. I can't worry about building up a tolerance or making my root problem worse right now. I have to try my best to get the pain under control because in reality the pain is controlling my life. I will continue to work at fixing the root of the pain, but until that day comes (whether it be here or in heaven) I have to to try to live each day as best I can. If pain medication helps I'll take it (unfortunately so far the nucynta has done very little for my pain, even the most powerful narcotics often do not help nerve pain). Worrying about things that may or may not happen in the future, like tolerance, withdrawal, or even tomorrow, do not make the problem any better. Today, this moment, is all we are promised and it has enough trouble of it's own (Matthew 6:34).

Moving Forward

Many of you have prayed for wisdom for us concerning future medical decisions, especially clarity on whether I should have pudendal nerve decompression surgery in January or not. This has been the hardest decision I've ever had to make in my life and, to be honest, it seemed like we prayed and prayed without a clear cut answer. But we asked for wisdom and trust that God gave it to us as He promises to do (James 1:5).

We had serious doubts about the surgery. The outcomes (60% chance of SOME improvement) are not great and the recovery process is rough to say the least. (4-6 months before seeing ANY improvement and at least 2 months of not being able to stand for long or bend over). And the big kicker for me is that, as with any surgery, there is a risk of scar tissue. So the entrapment could be released only to get re-entrapped in scar tissue. There is also no way to know 100% for certain that I have pudendal nerve entrapment (except through surgery). So I could go through the surgery for nothing.

We have decided to postpone the surgery until July and try out some other treatment options/diagnostic procedures first. I feel good about our decision, even though my pain has been quite debilitating the last few months.  I feel if I continue to uphold my lifestyle modifications: not bending/squatting/lifting a lot, limiting sitting, and not "over doing" things it is unlikely my nerve will get much more entrapped (if it truly is) in the next 6 months.

I feel like there are benefits to waiting for surgery: my daughter will be a little older so she will be a little more self-sufficient and hopefully completely potty trained by then. Also it will be the summer instead the dead of winter which will make the many short walks I will need to take post-op easier. My mother and two of my aunts will not be working as they are teachers so I will have more help available. My brother plans to get married in June so now I won't have to worry that I will not be recovered enough to attend the wedding out of state.

I know surgery is still a likely possibility for my future, but I want to feel like I have done absolutely everything to my knowledge possible conservatively before I have my butt cut wide open and ligaments severed! I also know that it is possible my condition might never improve. This is something I am struggling to accept to be honest. As I continue to become more debilitated, I worry that I could end up mostly bed-bound if God does not provide some relief. But even if that is His plan for me I have to trust that it is good and that He loves us.

We would appreciate your continued prayers for my family and I as I conntinue to battle chronic pain.

1. I was denied social security disability (The doctor who made the decision said he believes I can sit for 6 hours a day. Something tells me he didn't read my medical records). My husband has low-paying job despite his high education so we need just a little more money to afford our bills, especially medical bills. We are meeting with a lawyer on Tuesday to get help with our appeal. Please pray God will give the lawyer wisdom to help us.

2. My husband has applied for several jobs over the last week. Pray that God would provide a better job (both with schedule and pay) in the near future. He has to work mostly evenings right now and it would really be helpful it he could get a "normal" day-shift job since my pain is worse in the evenings.

3. Pray that God would help me to find a medication or form of treatment to get my pain back to a more managed level (like it was in August prior to my botox treatments). Currently my pain stays around a 6-8 (out of 10), whereas before it was usually a 4-6. 

4. We will travel to Georgia in February to see a physical therapist who specializes in difficult sacroiliac joint dysfunction cases. I felt this was important to rule out because 6 PT's and 2 doctors have told me I have SIJD, but have not been able to correct it effectively yet. So pray this PT will be able to help and that this will in turn help with my inability to sit or stand for very long.

5. I also plan to get a special MRI (in New York City) and to get a CT-guided pudendal block to double check that this is the correct nerve causing my pain. Pray that these diagnostic tools will bring greater clarity to my chronic pain.

6. Pray for contentment, peace, and joy in Lord even when life is hard and my pain is very bad.

Thanks for your continued support and prayers. As always, I would love to know how to pray for you all as well.

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)!