Sarah's Road to Recovery 4.0

Hi, My name is Sarah and I have Endometriosis. Endometriosis is defined as a, "systemic, inflammatory disease characterized by the presence of endometrial-like tissue found in extrauterine sites." (-source Lagana et al. 2019) Endometriosis affects 1 in 10 individuals,it is under/misdiagnosed, has no cure, and we do not know what causes it. Endo is often referred to as a gynecological or menstrual disease but this would be incorrect because I know from experience that Endometriosis is a whole-body disease that requires a multi-disciplinary approach for management. Now that we covered the Endo basics here is a bit of my Endo Story...

Many of you visiting this page know me from work, school, soccer, dance, or surfing. For those that don't know me and are coming across this page, I would describe myself as an outgoing person who is always down to have a good time. I have a love for working with special needs children, a passion for dancing and I love being outdoors or in the ocean. I have always kept myself busy and never shy away from new experiences or adventures. However, in 2016, my free-spirited self started to lose my spark when my life started to change. I noticed my energy levels starting to drop. I would suddenly feel fatigued and spend my days sleeping. I would feel as though I had the flu and couldn't move. I noticed around the time of my cycle that I would have pain but I brushed it off as part of "getting older." In 2017, I had a rare and unexpected pregnancy called a "heterotopic pregnancy," and as a result of this was rushed into emergency surgery for the removal of my right fallopian tube. During this surgery, I was diagnosed with stage IV Endometriosis and what is called a "frozen pelvis," (this means organs that are meant to float freely within the pelvis are stuck together by adhesions causing the organs and surrounding tissue to harden). I had never heard of this disease and turned to my gynecologist to help me get some answers. I was given 2 options by my gynecologist

1) to go on Hormone Suppressent drugs such as Lupron (these drugs do nothing to treat the actual disease and they only can help manage symptoms)

or

2)A Hysterectomy.

Thankfully, my intuition told me there had to be another option and I declined medical treatment. This was the moment where my journey of self-advocacy and research began. I spent the next few months researching and quickly learned that the medical system does not properly define, identify, categorize, or understand Endometriosis. I found an online community that pointed me to a doctor in Los Angeles that could help me. In 2018, I consulted with Dr. Siedhoff at Cedars Sinai. Excision surgery is considered the gold standard treatment for Endometriosis and unfortunately, it comes with a pretty expensive price tag. I saved as much money as I could and had a 6-hour-long excision surgery with Dr. Siedhoff in April of 2018. During this surgery, I lost my remaining fallopian tube to endometriosis. I lost my ability to conceive naturally. Despite this sad news, my symptoms improved but I quickly learned this disease destroyed my pelvic floor muscles and nervous system. I tried various therapies, treatments, and diets to help alleviate pain. It felt like I was on a very expensive rollercoaster of good days and bad days. Then in 2020, a new type of pain was developing and it involved my ribs. Sleepless nights with searing, sharp rib pain became my new norm and this was when I began to suspect I had Thoracic Endometriosis. I consulted again with Dr. Siedhoff and had my 2nd excision surgery in August of 2020. Unfortunately, due to the covid 19 pandemic, my surgical team was not allowed to perform the VATS procedure and take a proper look at my thoracic cavity. However, my surgeon was able to laparoscopically remove a small lesion of Endometriosis from my diaphragm. I felt so much relief. I thought my days of battling this disease were behind me. I was wrong. In late 2021, I began to notice symptoms of Thoracic Endometriosis. I was barely starting to financially recover from my 2020 surgery and I could not imagine having to go through the entire process again. I prolonged having another surgery until the pain and fatigue became too much to endure. The Thoracic symptoms were causing difficulty breathing, chest pain, and swelling. My quality of life was quickly spiraling out of my control and there was no amount of rest or medication that could help alleviate the pain. I decided to have another consult with Dr. Siedhoff and thankfully he listened to me and ordered some tests and a consult with a thoracic surgeon. On Jan 19, 2023, I had my 3rd excision surgery. It was a 2 part surgery that lasted 5 hours. They performed a laparoscopy and a thoracoscopy to remove endometriosis from my pelvis and thoracic cavity.

To say I have been fighting tirelessly for years against my own body and the medical system to manage this invisible illness is an understatement. From insurance companies, to doctors, to surgeons, I have learned to become my own advocate. I am asking for your help in covering the medical costs of this surgery as well as help covering my monthly bills as I am unable to work at this time. Any donation amount is helpful and if you cannot donate please help by sharing my story. I hope to be recovered, pain free, and back to work soon. In the meantime, my 2023 goal is to work on promoting awareness and advocacy for Endometriosis within my community. I recently created @sicker._than._your._average on Instagram to use as a platform where I can share knowledge, resources, and teach others how to navigate the diagnosis of this disease. If you know anyone who has or suspects they have Endometriosis please do not hesitate to reach out to me. Please use the hashtag #IAMsickerthanyouraverage when sharing this link and Thank you for taking the time to read my story.