Wednesday, 14 February 2018

My story: Taylor Lee


We all have unique events that have lead us here, on this journey. A journey that illustrates the struggles that we face every single minute of every single day. The struggles that we work so hard to push through. We struggle with the tasks that others take for granted such as taking a shower, doing our hair/makeup and putting a cute pair of skinny jeans on.

I am Taylor, a 24-year-old woman that is eager than ever to live life to the fullest each and every day. I have learned to push myself each and every day from the moment I wake up till the moment I go to bed.

I really can't remember when my symptoms first appeared. There wasn't a switch that turned on and all of a sudden my symptoms were present, they increased in severity as I grew older. I always remember having painful periods but I just believed that was just a part of being a girl. As a teenager, I would get very sick around the time of my period. I experienced bad abdominal pain, clotting, nausea, headaches, digestive issues. It would indeed disrupt my life.

I finally saw a gynecologist at the age of 16. I was put on continuous birth control (no placebos) at that time. My symptoms seemed more tolerable because I wasn't getting as many periods. At this point in my life, I was a junior in high school and I was so excited to move out of my parent's house, be on my own, attend a university, and have the real college experience. I ignored what my body was telling me.

It wasn't until I started realizing that I was having a difficult time regulating my low blood pressure (hypotension) that I decided that I should seek more medical guidance. I started getting more autoimmune-like symptoms such as lightheadedness, lack of energy, brain fog, weakness, and food sensitivities. Along with the ongoing abdominal and low back pain.

I then saw a cardiologist that did test after test, everything was normal. I still had continued symptoms. I was then passed to an endocrinologist, urologist, gastroenterologist, and numerous general practitioners in between. I felt like a 600-page library book getting returned over and over again because no one wanted to take the time to dig deep into to the novel and read it.

At this point I had so many misdiagnoses, so many tests, unneeded medication, I couldn't really grasp the reality of what life consisted of. Struggling to get out of bed, feeling terrible, staying at home while all my college peers are out having fun, and not being able to understand what is causing me to feel like this.

I was made to believe by a previous diagnosis from a gastroenterologist that the reason I was feeling this way was due to a stomach disorder. It wasn't until summer of 2016 that a stay at the Mayo Clinic proved that I did not have a stomach disorder but rather Pelvic Floor Dysfunction due to consistent muscle contraction.

Six months of pelvic floor physical therapy was what the doctor ordered. My symptoms continued. However, towards the end of therapy, my pain seemed more manageable. As many of you know when our pelvic region is in a lot of pain our pelvic floor muscles try to cope with it by continuously being contracted/tight.

Shortly after completing physical therapy I decided to get an IUD. The doctor that put my IUD in said to expect pain for the first six months. I pushed through and finally at month five I couldn't handle it any longer and got it removed. It was too painful. I was having more cycles and spotting. I wasn't on continuous birth control any longer. The IUD implantation caused my symptoms to get out of control.

I like to think of the IUD experience as a blessing in disguise because shortly after it happened, I crossed paths with an amazing doctor that really listened to me. She believed that my symptoms lined up with endometriosis and encouraged me to go ahead with a laparoscopy in order to get a clearer picture of what was happening within my body.

I had my first laparoscopy done last month. It was a clear diagnosis of endometriosis. They were able to take some spots out, however, a number of spots were very close to veins and they didn't want to risk taking them out at that time. In order to help manage this disease, my doctor and I have decided that I will stay on my current continuous birth control brand/pill form as well as a diet change. I am hoping for the best!

To everyone out there that is overwhelmed and frustrated with the symptoms of this disease or is looking for a diagnosis; keep on pushing through. I want us to be able to live life rather than just survive.


Thank you for sharing your story Taylor.

If you would like to contact Taylor, you can follow her on Instagram @taylorml30_.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.

S.
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