Our Broken Healthcare System

As we have traveled this journey of chronic pain and specifically the past few months of trying to determine what has been causing my intractable pelvic pain, I have discovered that our healthcare system is broken.

I know this comes as a great surprise to many of you so I will give you a moment to let this sink in.

For most of us, when we are sick or injured, we go to the hospital, get a diagnosis, get some treatment and move on with life. However, when you have an illness that is not easily diagnosed, especially a chronic illness, things are very different.

Doctors do not like to tell a patient that they don't know what is wrong with them. They also don't like problems that do not show up on tests or scans. At best, if your problem is not showing up on the battery of tests you are subjected to, the doctor will tell you that you should follow up with a specialist. At worst (and sadly more commonly) you will be told that there is nothing wrong with you and it is all in your head.

I have been surprised outraged by the number of my friends who have had similar experiences to mine when experiencing pelvic pain. Some of them went months and even years before they obtained a viable diagnosis and treatment plan.

I have had GYNs tell me that my pelvic pain was related to my fibromyalgia and should be treated by my pain management doctor and my pain management doctor was telling me that they could not do anything and I needed to be treated by a GYN.

I have had a GYN tell me that he was certain my pain was caused by scar tissue from previous surgeries and that he would review my records and have his surgical scheduler call me to get me scheduled for a hysterectomy only to call me a week later and tell me there was no pathological evidence of a physical problem and I was basically drug seeking. (Pain management is a whole other problem with our healthcare system-but that is for another post).

So here is what I have learned through this journey:

1. You know your body best, if you feel like something is wrong-get it checked out.
2. Doctors are very smart, but they don't know everything. If you feel like you are not being heard or there is something missing from your diagnosis-get a second opinion, or a third, or as many as you need (it took me 4 doctors to get to a diagnosis for my pelvic pain).
3. You have a right to your medical records. You should also keep your own records of doctors you have seen and what the outcome was.
4. Be honest about your symptoms. Don't be a hero-if it hurts, tell them.
5. Your relationship with your healthcare providers is just that, a relationship. If you are not comfortable with the relationship, get out. Find a doctor you can trust and feel comfortable talking to.
6. You are your own best advocate-speak up!

Blessings,
Meri