Advocate For Yourself!

Today my doctor told me, “Thank you for advocating for yourself.” I welcomed the words, almost felt like somehow she owed me that. I have spent two years going from doctor to doctor (Primary Care to Sports Medicine to OB/GYN to Pain Management), and I was misdiagnosed – twice. I have taken medicine – against my better judgement – as a diagnostic tool. I let a doctor stick a needle in my abdomen and inject lidocaine, looking for relief. After two years, I put my foot down. The OB/GYN wanted to do exploratory surgery, and I told her I wanted an MRI. It was an awkward conversation, almost a standoff. How do you tell a doctor that you have researched your symptoms and feel like you know what you have without insulting them? “Um, yes, I know you went to school for a really long time, but I have spent hours on Google.” “Yes, I know that abdominal wall endometriosis affects less than 0.5% of the population, but what can I say? I am a rare bird!” I was kind, but I was firm. When she said she felt like the MRI was a waste of time, I disagreed. I told her it was less than an hour out of my day and a $100 co-pay. Surgery was a day out of my life, plus a day or so to recover, a scar, and a much larger price tag. Not to mention that I had surgery over a year ago and that surgical wound still has not closed…so I am not really up for another surgery right now! I had been asking for an MRI for months and I wasn’t going to end the visit that day without a referral. Finally, she relented. That was a month ago.

Last week, I showed up for my appointment ten minutes early, on an empty stomach. The technician got me all situated on the table and then into the tube I went. I listened for the loud sound he said I would hear, and it was silent. He pulled me out of the tube and said that it wasn’t working. My first thought was, “No way! That’s just my luck.” Thankfully he had a replacement part for the piece not working, and after re-organizing the pads on the bed, he got me back in position, and in the tube I went. What an interesting bunch of sounds. It sounded like motorcycles at one point, and like an old typewriter at another point. The technician injected me with dye after about twenty minutes, then about five more minutes in the tube and I was done! Two years and one month into this pain I finally got the imaging I needed. I had to ask, “How long does it take to get the results?” I was delighted when he said my doctor would have the results the next day. I waited a day, then two, then the weekend came and still I had not heard anything. I sent an email on Monday and when I still didn’t hear back by Tuesday evening, I got a little worried. You know how we do…did they find something that they don’t want to tell me about on the phone? Did the replacement part not work and I am going to have to wait another month and do it over? Why is she not calling me? So I went ahead and scheduled a telephone appointment with my doctor for today. When the phone rang at 11:29am, I was ready for whatever she had to say.

“Well, you were right.” Those were both the worst and the best words I could have heard. Finally, I had a diagnosis. Finally, the pain I have felt for two years could be seen. It felt like validation, like both victory and defeat. “You do have endometriosis in your abdominal wall – actually all throughout your abdominal wall.” She followed that by telling me she appreciated that I didn’t give up, that I pushed her and that I spent so much time researching my symptoms. She said that she found it refreshing that I had taken such an active roll in my diagnosis and that I never stopped advocating for myself. What I said was, “Thanks.” What I wanted to say was, “Why did it never feel that way? Why did you resist me so much? Why did you push pills on me that I didn’t want to take, until I finally agreed to take them? Why, only now that I am right, do you offer thanks and encouragement?” I knew that it wasn’t worth it, and that she did the best that she could with the knowledge and experience that she had.

If you are in a position where you have a doctor that won’t hear you, don’t give up. Put your foot down. You know your body. You feel your symptoms. My doctor kept referring to my pain as cramping, and for two years I had to remind her that my pain is not cramping, but more of a shooting, intense pain, or at times an ache, but never a cramp. You know what your pain feels like. You have probably spent the equivalent of a part time job on Google researching symptoms, or online reading medical journals. I am not saying that you should diagnose yourself on Google, but I am saying that you should share what you find and feel with your doctor. Advocate for yourself…maybe one day your doctor will thank you, too.