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  

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

2nd Nerve Block

Tomorrow I am scheduled to have my second pudendal nerve block.  I am still debating on whether to tell them to use steroids or not. I feel like if they don't there is no point because I am not going to be cured by an injection that simply numbs me for a few hours.  I have chronic pain. It has been going on now for almost 10 months.  I also have had a lot of sacral pain lately and wonder if an Sacroiliac joint injection (as I have SI joint dysfunction on the left side) wouldn't help me or maybe a pudendal block higher up at the ischial spine level. So I am going to discuss my symptoms and concerns with my pain management doctor. 

I was supposed to have another trigger point injection and PT today, but my appointment was canceled so I will have to reschedule. I've been having a rough few days lately.  My myofascial pains in my neck and shoulders have been worse and I've been experiencing more vulvodynia pain like I did during pregnancy for some reason (and no, don't worry... I am not pregnant!). I really wanted to see the nurse practitioner today (she does the trigger point injections) because I feel like I need to either increase my Neurontin or switch to something different. I'm just not getting enough pain relief.  My pain levels have been hanging more around the 5-6 range.

Please keep me in your prayers tomorrow that the doctor will have wisdom and be understanding and that I won't flare badly if I have an injection with steroid.

PT and trigger point injections

I am traveling every Monday in January to the urogynocologist's office almost 3 hours away to have trigger point injections into the pelvic floor muscles and PT.  They have also considered doing bladder installations of medications to reduce the symptoms of urinary urgency/frequency, but I have been doing better in that area lately so we didn't do the instillation today.

I did have 4 trigger point injections of an anesthetic immediately followed by PT today. The injections were more painful than I expected.  My PT is from India (for those of you who know me well know that I love India and dream of going there one day so I was excited about that!), but I was a little disappointed that she doesn't do any different therapies than my PT back home.  But I have never had the trigger point injections so I am going to try 4 sessions of that with PT and then if it's not helping decide what to do from there. I struggle with being pessimistic (well, I like to call myself a realist :)) so I feel pretty confident I won't see much change by the end of the month, but I know God can do anything and I'm praying He does a miracle!

I have had a rough couple days pain wise. Today didn't help. I think the PT was more intense because I was a little numbed up from the injection so I will probably be sore for a few days.  I have had some vulvodynia symptoms the last few days too.  I don't know if it was from having intercourse (usually I have some burning afterward, but not this intense) or delayed from the pudendal block last week and a busy week with the holidays, but that's kind of frustrating because I thought I was mostly past those symptoms.  Hopefully it will die down soon.

I am scheduled to have another pudendal block January 11th.  I have mixed emotions about this. I have done some research and feel like without steroids there isn't any chance of long term pain relief.  I'm nervous if I have steroids in the injection I might react badly like I did back in August, but I feel like if I ever get to the point where I consider surgery (if a pudendal neuralgia specialist thinks I am a good candidate) the specialists will most likely want me to try a pudendal block with steroids.  I worry that maybe my pain management doctor doing the injection doesn't know enough or isn't doing the injection right, but I am just going to pray this week a lot and if God gives me a peace about having the injection then I have to trust Him.

I have heard some great sermons lately on suffering and I plan to post some of what God has been teaching me in the coming days.

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.

How it all began...

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

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

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

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

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

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