Where There is No Doctor

When I ventured over the Atlantic almost 8 years ago to share God's hope with those affected by HIV/AIDS in Africa, I carried along a book entitled "Where There Is No Doctor".  It taught everything from how to make an oral rehydration drink for vomiting children to how to deliver a baby in an emergency situation (thankfully I never had to use that knowledge!). Unfortunately it has not helped me learn what to do when you suffer from a rare type of pelvic pain and there is no doctor nearby who can help you.

I've decided the only thing worse than having a chronic medical condition, is having a chronic medical condition with no doctor/practicioner who fully understands it and can knowledgeably guide you and not enough money to aggressively pursue treatment even if it was available. While cancer, diabetes, and lupus are all horrible chronic medical conditions that I definitely do not fully understand, most of these patients are able to find a doctor within a few hours of driving who can knowledgeably help guide them in what treatments to try (or not to try) and help them develop a plan of action to have the best quality of life despite illness.

Unfortunately this is not the case for many chronic pelvic pain sufferers. I have to travel almost 3 hours to find a doctor who is knowledgeable enough to help me. And even then my doctor is basically a sounding board for treatment ideas (that I have researched) as she is not proficient in treating all aspects of my complex pain. Over the last 3.5+ years I have had to become my own doctor and researcher, learning about various types of both conventional and alternative treatments and the risks involved in those treatments (sometimes only after the fact unfortunately). This is the joy of having a poorly understood medical condition.

As more and more treatment options have not helped and some only worsened my pain, I find myself in a very frustrating situation: 1) I'm still in daily pain  2) I'm basically left with medications and alternative treatments/therapies in which to try and manage my pain 3)  I live in a rural area with very little access to the kind of pain management that I need.

I have a very knowledgeable physical therapist 3 hours away, but traveling to see her once a month for three days is not enough. When I saw her last month I felt like she helped chip a tiny sliver away off a huge iceberg. At this rate  -as long my pain doesn't progress more than it already has - I might see progress by the time I'm 100years old! I need consistent care with multiple modalities to even begin to make a dent in my pain. But everything I find that looks like it could possibly help costs $100+ dollars a session (no insurance accepted of course) and the nearest practitioner is 2-3 hours away.


I am so sick of being a detective - trying to figure out what exactly is my pain generator and how to best treat it. I'm tired of searching endlessly for a new treatment modality to try or a better pracitioner only to blow a day's worth of my husband's paycheck on more mediocre treatment. As my pain continues to progress and become more widespread, I fear I will never be able to get my pain under control and I will become even more debilitated.

But as bad as it is to not have access to a doctor who completely understands my pain and can guide me and help me get relief, I think of women in Uganda and other third world countries who don't have access to any doctor, let alone one who would know what pudendal neuralgia or sacroiliac joint dysfunction is! These women cannot afford medications, they don't have a freezer for ice packs or a microwave for rice bags, they don't have access to the Internet where they can search their symptoms and meet friends online with similar pain, and they are forced to continue to work hard digging for food and caring for their many children while having a husband that abuses them because they cannot met his expectations.

Life is hard, but it could always be worse!  I will continue to trust my good God who is upholding the world by the palm of His hand and giving grace to all. And as hard as life is for you today....you can trust Him too.

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)