Thursday, July 12, 2012

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 can trust Him too.


  1. I really feel for you. My struggle with M.E. has been a similar story of a lack of knowledge, a lack of doctors with knowledge, learning to do my own research and a lot of trial and error. It can be so frustrating & exhausting and soul destroying at times. The good news is that after 7 years of illness I've had a big improvement in the last 2 months. I've a long way to go & I don't know if it will last, but right now I'm just enjoying it! Hang on in there - keep trying things, keep researching and experimenting, hopefully some day you'll find the right treatment, or combination and please God, you too will begin to see improvement.

    You are right about how things could always be worse. My Mum would say this to me in the early years of my illness when very sick, I was housebound & I wasn't coping very well. It used to drive me mad because I just wanted her sympathy! But in recent years I've become more aware of just how difficult life/illness is for some people it has helped me to count my blessings. Both the big things like my family, my parents, a home, disability allowance, not being housebound anymore and the small joys like clean sheets and strawberries. This year I started to keep a gratitude journal where I give thanks for 5 things every day. Its really helped me to focus on the good & see just how many blessings I have.

    Thanks for your blog. I'll be praying!

  2. Thanks Miriam! I hope your improved quality of life continues and it is encouraging to hear people who find some relief after years of searching. That is a wonderful idea to keep a gratitude journal...I just might do that! Many Blessings to you.