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.

General Update

My root canal went well and was pain free, praise the Lord! I wish everything could be that easy (of course I do still have to get a crown). 

I had my first acupuncture treatment on Friday. It left something to be desired. I was disappointed in the doctor who didn't really listen to me about where my pain was, nor did she let me talk much in the initial consult! I had no relief of pain, not even for a few minutes. She said it may take up to three treatments to get relief.  Basically she inserted needles along my spine and then hooked me up to something like a TENS unit that sends electrical impulses through the body for about 15 minutes. I really don't understand how this is going to provide substantial relief. They said some people get so relaxed they fall asleep. It wasn't very comfortable to me....I was cold and my headrest smooshed my face together which gave me a headache.  I haven't decided yet if I am going back for more treatments or not.

I have had a really rough few days. Over the weekend I decided it was time to try Cymbalta. Several doctors have prescribed it for me, but I have been reluctant to try it.  Sometimes Cymbalta used in conjunction with Lyrica or Neurontin can provide greater pain relief for neuropathic pain and conditions like fibromyalgia. I was hoping it would really help my all over muscle pains and headaches that I've been experiencing. Unfortunately that was not the case. It gave me a horrible headache and I was so dizzy I couldn't even get up the next morning to take care of my daughter. I woke up in the night for over an hour and I was horribly nauseated.  I slept most of the day and felt extremely cold.  I think it was just too much central nervous system depression for my body since I already take a large dose of Neurontin.  Needless to say I won't be taking it anymore unless my Neurontin is decreased first.

I was looking back over my calendar because I keep an almost daily record of my symptoms and what I did that day.  During the month of February I had at least 14 days of considerable all over muscle pains and sometimes headaches (I have muscle pains everyday, but this is what I would consider a "flare") .  During the month of January I only documented 3 days. I began taking birth control the first of February and my "fibromyalgia" flares started about 9 days later. I don't know if it is the sole cause, but I do know I also haven't slept as well, sometimes waking up for over an hour in the middle of the night. That had not been a problem previously.  The only reason I went on the birth control pills was to help control my pelvic pain "flares".  There was no change in that I still had about 7 or 8 really bad pelvic pain days each month.  I never was too "keen" on trying birth control anyways. I think that may have played a role in my development of vulvodynia to begin with and I just don't feel like it is good to stop your periods for 3 months at a time. So, I think I am going to stop the birth control. Even if it did help my pelvic pain it isn't going to be enough to make this myofascial pain, headaches, and sleepless nights worth it. Don't get me wrong I want to be able to sit again, but I don't think birth control is going to fix that. Birth control is known to flare up people with fibromyalgia and vulvodynia and while I have not been officially diagnosed with fibromyalgia, my symptoms of myofasical pain are similar. I just hope I can get back to where I was before. December was really a pretty good month and I would be happy right now if I could go back to the way I felt then. Unfortunately pudenal neuralgia is a progressive condition.
Over the past few days I have questioned several times what is the purpose in this. Why is it necessary? I know the answers to these questions. It is necessary for my good and God's glory, but I just don't understand why it has to be so hard. Why do I get a day or two that is decent to turn around and get a week that is so hard? I just want to take care of  my family and serve God.  But I am reminded of two things that the Bible tells us and in this I take courage and find joy no matter what the next month holds.

"For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:8-9

"The LORD is righteous in all his ways and kind in all his works. The LORD is near to all who call on him, to all who call on him in truth." Psalm 145:17  

Root canal for Pudenal Neuralgia?

Tommorrow I am going to get a root canal. It seems me and nerves don't get along.  I had never had a cavity until after I had my daughter (thanks to pregnancy gingivitis).  The cavity was filled over a year ago, but I continued to have sensitivity to cold and pain at times.  My new dentist smoothed down the filling and my pain got better.  Last week I noticed two little bumps above the tooth with the filling that had pus in them (looked like pimples). They weren't painful, so I thought they must just be a strange sore (I get canker sores sometimes) and I swished mouthwash and salt water.  Finally I googled my gum "pimple" and found out most likely the nerve had died and caused an absess that was pushing it's way through my gum. The dentist confirmed my google diagnosis. So off I go to the endodontist tommorrow. I will then follow up with my dentist for a crown.  We definitely didn't need any more medical expenses right now, but at least I have access to dentists and can get the care I need.  Many in this world do not.  Too bad my pudendal nerve couldn't just die and all my pain go away.  The only problem with that is I can't have a root canal on my pudenal nerve because I need it in order to go to the bathroom.

Point of this post? If you have a "gum pimple" go to the dentist! :)

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.

Closing Doors

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

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

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

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



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

Waiting Game

Tuesday I had a 2nd bilateral pudendal block at the alcock's canal level (that's basically near the sit bones but they go in through the buttocks). I went ahead and told them to use steroid so they used 20mg of Kenalog in each side. This time I was numb from almost my pubic bone up through the perineum and to about the middle of my butt. I was also numb down most of my left leg.  Last time I wasn't numb through my perineum which concerned me so this block actually was probably in the right spot.  It felt really strange being numb in that area though and while it took away most of my pain for a several hours I was left with strange sensations internally and some pain. My guess is I was my pain was coming from where the needle went in internally. 

Wednesday, I went to work for about 5 hours, but my sacral area was really hurting.  By the time I got home I was pretty flared up.  Then Thursday I had a lot of vulvar burning and I still do today.  So I think the steriods have kicked in.  It's just a waiting game now to see if they will help any. Usually within 7-10 days you know if they are going to help at all.  It's not uncommon to flare after a steriod injection so I am praying that's what all this is. I feel overall fatigue and have more burning in my feet like I did after that S1 injection I had in August with steriods. I think I am just a person who doesn't tolerate steriods well. Or myabe this is jsut my "fibromyalgia"/myofasial pain syndrome flaring from the trauma of the injection.

I've been pretty down the last couple days. I can't believe sometimes that I really have pudendal neuralgia and maybe even fibromyalgia. I say all the time to my husband, "what happened to me"? I just don't understand it. I know God is working for my good, but how? How is being unable to hardly care for my family, unable to be involvoved in ministry, unable to hardly work, unable to leave my house a lot of days good? Hopefully one day I will be able to see more specifically how pudendal neuralgia is for my good, but for now I just have to trust that God is who He says He is.

I don't even know what the next step is. I have made an appointment with a pudendal neuralgia specialist for August (that was the first available), but sometimes I wonder if this is it and maybe I just need to try to live with this condition the best I can in this momentary life. There is the option of surgery if the specialst thinks my nerve is really entrapped, but there is no way to know for sure and the surgery outcomes are not that great.  I have a few other meds I want to try first so this gives me 7 months to try other things (no more injections unless there is a miracle in the next week), pray for guidence, and research more about surgery.  So until further notice....keep prayin! :)

Pudendal block results

Yesterday I had a bilateral pudendal nerve block only using anesthetic.  Good news is my pain went away for several hours. I was able to sit comfortably for most of the 3 hour trip home from the doctor. I was basically numb from the lower half of my butt to almost the back of my knees. Since I have responded badly to steroids in the past (we think) the doctor thought maybe just a block to numb the pudendal nerve area would be best.  That way we could see if that is what is causing my pain.  He actually said it may be possible to decrease the pain by doing a few anesthetic only blocks in order to "break the pain cycle". I feel like there is a better chance of relief with the steroids so I will probably ask for that next time. I don't like the idea of having more than 2-3 injections as this is a dangerous procedure. After a couple hours of sitting I started having a lot of sacral/coccyx area pain. I have this pain on/off anyways so I don't know if that pain isn't related to the pudendal nerve or what.

The doctor wants me to go ahead and have another injection in a week or two. I will be traveling to see the urogyno pelvic pain doctor's nurse practitioner and PT for pelvic floor trigger point injections once a week for the next four weeks so I guess we'll do another pudendal block too.

Bad news is I have  pudendal neuralgia.  It is estimated that 1 in 100,000 people get pudendal neuralgia....lucky me, huh? Whether the nerve is entrapped or just irritated we don't know. The only way to treat and even correctly diagnose a pudendal nerve entrapment is through surgery.  I am not surprised that the block was positive and I have pudendal neuralgia. I have suspected this diagnosis for several months now, but it doesn't make it any easier to accept.  This condition is extremely difficult to treat and becoming pain free again is not always possible.  But I am trying to hold firm to the fact that God is in control, He loves me, and is allowing this for my good and His glory.

Thank you for your prayers. I am not overly sore today and for that I am VERY grateful.

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!

Urogynocologist Appointment Update...Finally

I had a pretty good visit with a urogynocologist who specializes in pelvic pain/health.  She was very thorough and developed a treatment plan for me as follows:

1.)  She acknowledged I am probably suffering from pudendal neuralgia.  She referred me to a pain management clinic who does nerve blocks for her patients frequently. So on December 27th I will get a pudendal nerve block which will hopefully better diagnose me and possibly help my pain, but it is more likely I will also flare up after the block. Unfortunately the block is necessary to diagnose my pain. My doctor is not a fan of the surgery that is necessary to release a pudendal nerve entrapment (and neither am I at this point) so we will stick to conservative treatments until my quality of life greatly deteriorates if I do have pudendal neuralgia.

2.) I will travel the 3 hours back to their office a few times (I think the doctor wants me to go once a week for 8 weeks, but I don't know if that will be possible as I can't drive myself) for a series of treatments including:
 
  -Bladder installations (this is a treatment they use for interstitial cystitis which I don't have, but I have some of the symptoms including urinary urgency/frequency).  These symptoms have been better though the past week so i don't know if I want to do this or not. They will instill a solution of medications into my bladder that over time will hopefully help decrease my symptoms.

     -Trigger point injections.  I have painful "knots" in my pelvic floor and abdomen so they will inject an anesthetic into these areas.

     -After the trigger point injections I will follow up with physical therapy there. A fellow sufferer of pudendal neuralgia recommended this office to be because of their PT's.  I am really hoping they will be able to help me more than my current PT (who I love, but is just not extremely experienced).

     -"Talk Therapy".  The office has a psychiatric nurse practitioner who talks to patients about the struggles associated with living with chronic pain. I think I will try this, but I feel like if the therapist isn't a Christian they won't be able to really counsel me appropriately. But she deals with people with pelvic pain everyday, so it will be nice to talk to someone who understands my struggles a little.

I was hoping I would start these sessions in the next couple of weeks, but they cannot get me into PT until the first of the year.  This is really dissappointing to me because we have met our out of pocket maximum on our insurance so any other treatments I have this year will be free. I am supposed to talk to the scheduler who coordinates these treatments the first of the week. Please pray she will be understanding and God would allow them to get me into PT at least once before the end of the year!

3.)  The doctor also recommended I try a continuous birth control like Seasonique so see if I would experience less pain flares (since I usually flare around certain times of my cycle).  However this birth control would be extremely expensive for us. I don't really want to add hormones to my body because they make me emotionally unstable, but if it would help my pain I would do it in a heart beat. So I am praying about this and am going to wait until after my nerve block and a couple of these other treatments first.

I am transferring back to the physical medicine and rehabilitation (physiatrist)  doctor in my hometown that treats pelvic pain patients this Tuesday. I am praying this will be a good visit as I have increased my Neurontin a lot and am still suffering at times from the headaches and generalized muscle pains.  Please keep me in your prayers on Tuesday.  So now I will have two main doctors....the urogyocologist and the physiatrist. Thanks for caring for me, reading this blog, and your continued prayers.

Neurologist Appointment Update

This past Friday I saw a Neurologist at a nationally renowned medical center.  To say the least I was very disappointed in my experience. I have never been treated by a doctor like I was there and left her office in tears.  She did not want to hear my story or really listen to me.  She seemed to have her own "protocols" to follow and didn't want to answer any questions I had.  She said my exam was normal, but that I should get an EMG (nerve motor function test) since I was having burning in my toes.  I asked if she knew anything about pudendal neuralgia or knew any other doctors in the area who did and she said that my pain isn't caused by the pudendal nerve because that doesn't refer pain to the feet.  Now, I am not a doctor, but the pudendal nerve is the  nerve that carries pain/signals to the pelvic floor and that is where the majority of my  pain is.  She said she didn't know of any doctors who treat it and so she ordered an EMG to check of my legs to check for sacral radiculopathy. 

If I wanted that kind of EMG I could have that done locally.  I called the EMG technician directly to see if they can indeed to a pudendal nerve EMG and she said they can. I asked what kinds of doctors order them and she said neurologists and pain management docs.  Needless to say I am not going back to her.  I have an appointment the end of January with a neurologist locally that I respect from a nurse standpoint if i need to see a neurologist again.

I do have burning in my feet which concerns me, but I don't have pain shooting down my legs and the burning comes and goes which would be consistent with a sacral radiculopathy.  I feel like it could easily be due to central sensitization (where the central nervous system is "wound up" due to the pain) which would be consistent with the headaches and neck/shoulder pain that I have.  I also have some symptoms of Raynaud's phenomenon which would be more of a circulation issue (I have had problems with my hands/feet being extremely cold for a few years now).  The neurologist didn't like it  when I brought up these possible reasons for the burning in my feet.  She even said that Raynaud's is more likely possible with an autoimmune disease and that I could still have something like lupus even though the blood tests were normal. That sometimes they just have to treat based on the symptoms. I have never heard of that before.  I didn't tell her that I have read it is possible to have feet pain with pudendal nerve problems....it wasn't worth it.

So, my plan as of now is to go back to the first physical medicine rehabilitation doctor that I saw here in  my hometown. She has a special interest in pelvic pain and has been treating a patient with similar pain to me with good success. She is very caring and compassionate and will listen to me and the good thing is I don't have to drive 3-4  hours to see her every time I need medication adjustments.  Hopefully she will take me back as a patient once I get all my paperwork faxed back to her.  I am also going to see a urogynocologist out of town on December 3rd who treats chronic pelvic pain.  I have heard good things about this practice and that they are aware of pudendal neuralgia.  I have recently started feeling like I need to urinate all the time. I don't have  frequency I just feel like I need to go, kind of a burning a little.  So I guess it's good to see a urogyno.

I am doing ok as long as I don't do anything to flare me up too much (a lot of squatting, bending, walking, or sitting). I can't really sit even on my cushion right now for more than a few minutes which is really affecting my life. I think I need to increase my Neurontin again as I am still on a pretty low dose...it's the only medication that seems to help at all.

It's been a frustrating few days. Please keep praying. It's hard to think about enjoying the holidays when I can't sit.  Without God, I can honestly understand how people could commit suicide due to pain and depression.  Thankfully though, I know God loves me though and is doing this for my good and His glory.

Dr. Visit and Fears

I went on Tuesday to my out of town pelvic pain specialist.  I feel sometimes like she just doesn't know what to do with me. I explained how much pain I've been in recently and she feels like I have just developed a chronic pain syndrome (Myofascial Pain Syndrome). I do not doubt I have developed chronic pain as I have been dealing with this now for 7 months, but I want to understand what exactly started my pain.  When I started having pain it was in the sacral area and shot down into my pelvic floor making sitting uncomfortable.  I want to know what makes sitting uncomfortable. She says my central nervous system is "going crazy" and causing me to have all this pain. So the goal is to break the pain cycle. I am all about getting the pain under control, but I want to know why I can't sit.  There are a lot of people who have chronic pain that affects their central nervous system who can sit just fine. I told her I think that I have pudendal neuralgia (damage to the pudendal nerve which innervates the pelvic floor). She said she will send me to a urologist in the same city that studied under a doctor in Minnesota who specializes in pudendal neuralgia and have him do a pudendal nerve block to diagnose if I do indeed have pudendal neuralgia. The problem is even if I do have pudendal neuralgia there isn't a cure and treatment is very difficult.  I am already basically doing all the treatments I would do if I have pudendal neuralgia so i don't know if the block is worth it.  They would only use anesthetic, no steroids since I responded so badly to the nerve injection with steroid I had in August.  I also have a lot of bio-mechanical issues that can affect my pelvic pain such as sacroiliac joint dysfunction, but I have not responded well to physical therapy. In fact I seem to get worse with  PT. So we are praying about whether to go to this doctor or whether to seek out a pudendal nerve specialist which would require us to fly to see a doctor. My pelvic pain doctor said I don't have to travel to see her, we can just adjust meds via phone for a while. I guess that's good since I had to lay down in the car for the entire 3 1/2 hour drive.

For now, my doctor increased my Neurontin dosage and wants me to try to wean off the Desipramine, which is a low dose antidepressant and is supposed to help with chronic pain and sleeping.  She also wants me to take pain medication when I need it to try and keep my pain levels lower.  It's so hard for me to take medications because I don't want to need them. I want to be "normal".  My pain levels are around a 6-8/10 daily right now even with pain medication sometimes.  Before this "flare-up" I held around a 4/10 daily. The doctor thinks I shouldn't do physical therapy until  my pain level comes down, but not doing PT makes me feel like I will never get better because I am not doing anything to get better other than medications.

It's scary. What if we can't get the pain under control? What if I just continue to worsen?  How am I going to live like this? I already can't hardly take care of my family.  But I know God is in control. He loves me and He promises to care for me.  It may not be the life I want to live, but I don't have to be afraid. In fact, God tells me not to fear.

I spend a lot of my extra time reading about what could be wrong with me trying to "diagnose" myself.  Sometimes I think I trust in medicine or doctors more than I trust in God. When in reality God is my only hope. If I get better it will only be because of God's mercy.  So, I am going to try not to read about my condition for the next few days and instead spend that extra time reading God's promises and praying.  


Monday I will go to see the Rheumatologist, another piece of this confusing puzzle.


"God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling."  Psalm 46:1-3

One day at a time

I finally heard back from my doctor's nurse last Thursday and she wants me to see a Rheumatologist because some of my labs are abnormal.  My thyroid was a little low and my ANA (which is a blood test for autoimmune disorders) was positive. Also my red blood count and white blood count where a little low. This doesn't mean that I for sure have an autoimmune disease,  but they need to do more testing to rule that out. I wanted to see a female Rheumatologist since a lot of my pain centers around prengnancy/childbirth and areas that would be more easily discussed with a woman.  Unfortunately the two female Rheumatologists in my area either weren't accepting patients or couldn't see me until January.  So I am trying to get an appointment with one who is out of town in a bigger city.  I hate to keep going to all these doctors out of town especially since it is so difficult for me to travel with my pain. My husband and I have discussed the possibility of going to Cleveland Clinic in search of a more definite diagnosis, but it would be a pretty big expense so we are hoping we won't have to do that.  The out of town Rheumatologist has to accept me as a patient and then it will be a month before they can see me. I'm just hoping I can get an appointment soon. 

My headaches have been better and even my neck and shoulders haven't been quite as tight the last two days.  It seems like sitting is becoming more and more intolerable for me though which is very depressing. I really think I have a condition known as pudendal neuralgia which is extremely difficult to treat.  I am supposed to see my doctor on October 19th and when I do I hope she can help me better understand what to do next if I do have pudendal neuralgia.  I have another physical therapy session tomorrow and I'm trying to either walk or go to the warm water therapy pool at least 5 days a week. I keep praying for a miracle and for God to heal me or at least let me be able to sit again without pain.  But I know that that may not be His will for my life.  I can't imagine living like this for the rest of my life, but my husband reminds me that I don't have to worry about that. I just need to focus on getting through each day at a time.