Hi, my name is Emily Pierri, I am 16 years old and this is my story. I was a relatively healthy child until I turned 5 years old. This is when I was diagnosed with Type One Diabetes (T1D). I managed my T1D very well, I adjusted to my new normal, and life was great. I was a social butterfly, very active, and enjoyed life.
My life turned upside down when I turned 9 years old. My health was slowly declining, I was in a lot of pain, but doctors could not figure it out as everything appeared to be “normal”. I had no answers for 4-5 years. Finally, when I turned 12, I started my period, and that’s when I knew something was very wrong. My periods were so painful. My doctor put me on birth control and said that would help, but it didn’t, and I tried over 10 different types of pills. At the age of 13, I went to see a Paediatric-Gynaecologist, I was given yet another pill to try and help with my periods. It only made matters worse. It was at this point that doctors started to take me seriously. I met with a Paediatric-Gynaecological surgeon and she said I may have endometriosis and that it was up to me if I wanted an exploratory laparoscopy (surgery to look for causes of pain, abnormal growths, bleeding, or disease in your abdomen. During this surgery, small incisions are made in your abdomen). I said yes to surgery and the procedure was done on December 19th, 2013. I was diagnosed with endometriosis. I finally had an answer! I was thankful, yet scared.
About a month went by and I was doing fairly well. I was back to my normal and energetic self. Unfortunately, after that month the pain came back. It was even worse than before. The doctor said there was no way my endometriosis could be back. I went to an excision specialist to find help. I was then diagnosed with a disease called adenomyosis (a condition characterised by the presence of ectopic glandular tissue found in the muscular wall of the uterus). I had to have more surgery in Septmber 2014, and doctors found extensive endometriosis. No wonder I was in so much pain! I also had a lot of adhesions (fibrous bands that form between tissues and organs, often as a result of injury during surgery).
Time went by, and the surgery took a very long time to recover from. We, as a family, had to make the decision of turning to homebound schooling because I couldn’t make it to school. I thought I would get better and that I could return to school, but my health decline and I was unable to return. I miss having a normal high school experience. Over the last 2-3 years, I have had 10 abdominal surgeries for endometreosis and adhesions. I am now suffering terribly from severe pelvic and abdominal pain. Doctors have tried everything to help with the pain, but nothing as of yet has worked. In July 2016, I was diagnosed with yet another chronic illness called POTS (postural orthostatic tachycardia syndrome). This diagnosis was hard for me to process (Yet another chronic illness!). POTS causes me to suffer with a high heart rate, moments of dizziness, nausea, vertigo, and I get blood pooling in my legs and feet, I am now bed bound most days and also suffer with severe bowel issues . Currently, I am awaiting a doctors appointment to sort out a suitable medication, I am also trying to get an appointment at the Texas Children’s Hospital in Houston, and hoping this might get some answers.
To anyone suffering similarly, I would say, take one day at a time and stay hopeful. It is hard and frightening at times, but you will get through it. Seek out support (support networks on the internet or in local areas) which has helped me immensely. I always remember the following quote when I’m feeling down: “She believed she could, so she did!”. That is one of my favorite quotes and it helps me through my bad days.
Having these illnesses has changed my perspective on life drastically. You really find out who your true friends are, and you learn so much about yourself and about life. I believe that I have become a much better person from all of this. I have become grateful for the little things in life. My health problems are still an ongoing matter, but I believe sharing our stories and personal experiences is so important because it makes people aware of such illnesses. That is very important to me. I feel passionately that people need to know and understand more about invisible and chronic illnesses, which will then, hopefully, lead to better outcomes and treatments.
I strive to spread awareness of invisible and chronic illnesses through my Instagram (chronically_emily), my YouTube channel and now my Facebook page! Thank you for taking the time to read my story, it truly means a lot, I hope my story can spread awareness to others.
Thank you, Emily x
To follow Emily’s journey on social media, follow the link’s below: