Endometriosis is a disease that occurs when tissue similar to the uterine lining is found in other places in the body. The gold standard of treatment for endometriosis is excision surgery. Symptoms of the disease include pelvic pain, painful bowel movements, painful intercourse, nausea, vomiting, irregular periods, infertility, as well as others. Endometriosis affects every aspect of the lives of those who suffer with the disease.
I started my period when I was 13 years old. Soon after my first period, I began experiencing terrible cramps and would have long and heavy periods. I missed school, and as I got older, I missed work. I would have to cancel plans with friends who didn’t understand why or what I was going through. It was hard being a teenager and having these symptoms.
I started going to a gynecologist when I was about 16 to try to get on birth control to see if that would help with my symptoms. Unfortunately, birth control didn’t help so my doctor suggested that I have laparoscopic surgery to see if I have endometriosis. Before this appointment, I had heard of endometriosis because my older cousin had been diagnosed and recently had surgery.
I was diagnosed with endometriosis during this surgery. Unfortunately, I didn’t know the difference between ablation and excision. I found out after surgery that my doctor used ablation, which is burning of the disease. (Excision is cutting the disease and has a lower rate of recurrence). I was still experiencing my symptoms a few weeks after surgery and my doctor told me there was nothing else she could do for me. She didn’t refer me to an endometriosis specialist. At this point, I was young, didn’t realize I needed to do my own research, and forced to find a new doctor.
Since then, I have tried other birth controls, Lupron, diet changes, bioidentical hormones, pelvic floor physical therapy, have had five other surgeries related to endometriosis including a complete hysterectomy. I had a hysterectomy in 2014 at 23 years old, but a year later I was able to find an endometriosis specialist and had excision surgery. Along with removal of both ovaries, uterus, and cervix, I have also had my appendix and gallbladder removed. Since 2016, I haven’t had pain directly related to endometriosis. I have seen close to 30 doctors and medical professionals for endometriosis and other conditions.
After my hysterectomy, I made the decision to see a therapist/counselor, which has been extremely helpful. I don’t have any children and that was something that I had to come to terms with. I don’t recommend a hysterectomy, but it was the best decision for me given what I was going through and knew at the time. It has taken me years to accept this for myself.
I have also been diagnosed with irritable bowel syndrome, polycystic ovary syndrome, interstitial cystitis, vitamin d deficiency, osteoporosis, kidney stones, sphincter of oddi dysfunction, and have a bulging disc in my lower spine.
In 2013, I decided to write about my experience to try to help other people. At this time, I couldn’t find a lot of information about different treatment options and people’s experiences. This is when I really started advocating for myself.
At 19, I was studying to be a pharmacist and have been accepted into pharmacy school twice. Because of my health, I have had to withdraw twice. After the second withdrawal, I decided to attend college online and graduated with a Masters in Public Health and a Bachelor of Science in Health Care Administration. I now work in the office of a local restaurant part time, which has been my longest job in seven years because of my health. My first book “Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options” was published in 2018. Since then, I have published “Living with Alpha-1 Antitrypsin Deficiency” and “Living with Endometriosis Workbook and Daily Journal”. My fourth book Living with Kidney Stones will be published December 2020. I want to use my experiences to help others. I don’t want anyone to go through what I have.
I have had to depend on my parents financially for most of my adult life, which has been difficult to deal with. I’m very thankful that they were able to help me when I wasn’t able to support myself. I am very fortunate to have supportive family and friends who don’t make me feel guilty when I have to cancel plans.
Know that you aren’t alone and there are people fighting for you and bringing awareness to endometriosis in hopes of affecting change.
MPH, Author, Patient Advocate.
“Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options”
“Living with Alpha-1 Antitrypsin Deficiency: The Complete Guide to Risk Factors, Symptoms, and Treatment Options”
“Living with Endometriosis Workbook and Daily Journal“
Chronic Illness Support, LLC
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