Sunday, November 3, 2013

My Journey Back To Health: Be Your Own Advocate

I shared this on my Facebook page,  but I thought this might be a better forum. I can share my progress and  keep everyone updated who is interested without subjecting those who are not to the nitty gritty details.

As many of you know,  I have been struggling with my health for quite some time. It is only recently that I have started down the road that will give me the answers I am seeking. The doctors I had been seeing were providing me no answers, so I decided it was time to get some second opinions. The incompetence, ignorance and general apathy about my concerns from my doctors is absolutely astounding.

My mother has celiac disease. Since it is hereditary and I am recently exhibiting some symptoms, I decided to pursue it further. Her gastroenterologist recommended my sister and I get tested, since it is hereditary and sometimes can be "invisible." So right after her diagnosis (this is going back a few years now), I went to my primary doctor and saw one of his partners to inquire about the blood test to determine if I had or was at risk for Celiac disease or a gluten intolerance. After much coaxing and arguing, I finally convinced her to run the test- which she told me came back negative.

Fast forward to Wednesday, October 30,  when I met with a gastroenterologist.  He requested my medical records before my visit, and lo and behold there is no record of any testing related to celiac disease or gluten intolerance in my history.  So for the past few years, I have been living under the assumption that I do not have a problem with gluten when in reality, we just don't know. It appears as if she never ran the test. I say "it appears" as if that because there are no records of it. I have no proof that she said she was going to test me, other than my word. So there isn't much I can do about it now. My new doctor ordered a series of tests, the results of which should be in sometime this week.

I also decided it was time to go back to the reproductive endocrinologist (RE). My PCOS symptoms are completely out of control. My regular OBGYN seems to think there is no problem with me having 57-69 day cycles, even when I am on birth control pills, despite my pleas to run some tests because I feel something isn't right. So on top of the plethora of tests she is running (thyroid, prolactin, estrogen, progesterone, testosterone, as well as tests for possible insulin resistance), she did an ultrasound where it was discovered I have a cyst on my right ovary about the size of a small clementine. I am working closely with the RE to prevent it from growing any further and hopefully get it to go away completely.

To say I am frustrated by the incompetence of both my primary doctor and my OB is an understatement, but I can't be dwelling on that right now.  I need to focus on working with these two specialists (and probably a nutritionist) to get my health back in order.

I share this with you to encourage you to be your own advocate for your health. Doctors are not perfect. Follow your intuition. Know your body, and don't stop looking for answers until you find out what you need to know. I've known for months something wasn't right, but I couldn't find a doctor to listen to me. Now I have 2 wonderful doctors who are working with me to find the answers I need. Words cannot express how much I needed to hear "You absolutely have every right to be concerned, and we will get to the bottom of this." after hearing "You're fine." "It's normal." "Don't worry so much." and so on and so forth.

Thank you for all the prayers and support. I will update as I find more things out! 

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