Carly’s Fight Like a Girl Story (PCOS and Vagus Nerve Disorder)

Jun
07
2013

PCOS Ribbon Hi, my name is Carly and I am 19 years old, almost 20. When I was thirteen I woke up in the middle of night with abdominal pain so strong that I couldn’t even stand up to go get my mom. The next day, she let me stay home from school. I called her at work in the middle of the day, and told her I had a fever of 104. She took me straight to the emergency room. I ended up having mono, a kidney stone, and cysts on my ovaries. A year later, I was diagnosed with polycystic ovarian syndrome (PCOS). I am unable to come off birth control without the cysts returning, but that has been the least of my problem’s.

When I was fifteen, I woke up in the middle of the night very sick. It is hard to explain my symptom’s, but from that point on, I have not really gotten any better. I started having problems digesting food (I couldn’t digest food), I had recurrent kidney infections, and lots and lots of nausea and dizziness. I went to a gastroenterologist. He diagnosed me with acid reflux. A few years later, I had my gallbladder removed to try and help my symptoms. After my gallbladder was removed, we found out that I did not have acid reflux or gallbladder disease. I changed my family practice and began looking for answers as to why I had been feeling so sick.

I was very small anyway, and had lost around twenty pounds, so something had to be done. They began testing me for autoimmune diseases and when nothing could be found, my doctors gave up. So, I looked for another doctor. When that doctor couldn’t find anything after three months, he gave up too. He said, “You are a healthy teenage girl. Sometimes things just happen. You should get more exercise and drink more Gatorade.”

At a last resort, I had an appointment with my gynecologist to refill my birth control for the PCOS. I decided to tell her my symptoms. She ordered an EKG and had then had her nurse schedule an appointment with a neurologist, to make sure she covered every option of what could be making me dizzy. I had also been fainting frequently and had huge bruises from when I would faint and fall. I went to the hospital that same day to have an EKG. A few days later, I got a call from the hospital saying that my EKG was abnormal. They referred me to a cardiologist who I saw the next week. I was diagnosed with sinus arrhythmias. I had to wear a heart monitor for three weeks.

Then I saw the neurologist and finally got the answer that we had been waiting for! It only took one visit for the neurologist to give us a diagnosis, and an MRI the next day would confirm it. I have a vagus nerve disorder, which had been causing everything from my stomach not being able to digest food properly, having kidney infections, the fainting, dizziness, and EVERYTHING.

This is by far not the worst thing out there that I could have, however, it is not something that is fun to live with. Currently, there is not really any treatment for the type of vagus nerve disorder that I have. There are things like blood pressure medication and some antidepressants that can help with symptoms, but  they aren’t FDA approved to treat that. So for now, I will just try to figure out how to live with this unpleasant illness.

Carly
Alabama
Submitted 11-15-2012

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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Comments

  1. Kay Phelan Neal says:

    What a brave young woman you are Carly! To have all that happening to you at an early age must have been very difficult having a normal teenage life. Thank you for sharing your story. I pray for you that there will be cures for your condition soon. My brother died of HIV/AIDS at age 30, 22 years ago. He knew he was going to die from this horrible disease and he took a LOT of experimental drugs that were being tested by the FDA to help with not only possibly a cure but to help with the symptoms so that HIV didn’t have to turn into AIDS and people could survive longer with this disease. My 49 year old cousin today has HIV and because of the drugs out there now…it has not turned into AIDS…he has some health issues but not the suffering and death sentence my brother faced. I am proud of my little brother Jim who was one of I’m sure many that were brave enough to take these drugs in order to help others in the future. Stay strong Carly..ask for God’s guidance honey. Kay (56 years old…recently diagnosed with breast cancer).

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