My Full Diagnosis Story
Hi everyone! So excited to be starting this blog. Today I wanted to give a full in depth story of how I received my diagnosis. It all started back when I first got my period when I was around the age of 14. I remember having really heavy and painful periods that would leave me begging to skip PE, and some days, school all together. After complaining to my mom, she took me to my general doctor who gave me the same answer most endo suffers hear: "Painful periods are normal. It is just something women HAVE to deal with." She then prescribed me birth control to help regulate my periods, and I was sent back home.
I will say that the birth control did help me for a while. I seemed to have little to no periods and my pain was minimal. My junior year of high school I had to move down to Orange County, which led me to have a checkup before I was able to attend my new high school. At this checkup, the doctor seemed distraught that I was taking a high estrogen birth control, and prescribed me a low estrogen birth control instead, insisting it was healthier for me. Unfortunately, the switch caused my periods to be heavy and painful again, and I developed unwanted symptoms my old birth control never gave me like weight gain, depression, and acne. All of these new symptoms drove me over the edge, and I started to research non-hormonal forms of birth control, because I liked the idea of it being natural without synthetic hormones. I stumbled across the copper IUD and quickly booked an appointment with a local gynecologist to have it inserted.
For those of you who have experienced an IUD insertion, you know exactly what I mean when I say that the pain is unbelievable. The first time they tried to insert it, my cervix was rock solid, and the doctor spent 15 minutes trying to push my cervix out of the way. When they failed, they sent me home sobbing, with a pill to insert prior to my new appointment that would make my cervix softer. Although I was completely terrified that I had to go through the pain again, I decided to try a second time and thankfully, it worked!!
Fast forward a couple months, I was bleeding non stop everyday, felt sick and depressed beyond belief, and developed a pain in my right ovary that was dull, but noticeable. I had done some digging on the internet about IUDs before I got mine and saw that IUDs can move out of place. I was convinced this was what I was dealing with, so I scheduled an appointment with my reluctant gyno, who was positive it had not moved out of place, to have an ultrasound. My gyno posted my test results on a portal message saying everything looked good. Luckily, I was curious enough to read the whole test report, and it stated that I had a very small complex right ovarian cyst and adenomyosis. I was confused about what this all meant, but most of all I was PISSED that I had to go out of my way to receive any information about what a complex right ovarian cyst and adenomyosis even meant. After calling and emailing, I finally received a message from a nurse saying to not worry and they would check in three months to see if it resolved. I can go on for hours about how this whole situation made me feel, but I will save it for another post.
After a few weeks the pain only got worse, and I decided to contact another gynecologist for a second opinion. They were also reluctant at first, but listened to my complaints and scheduled a second ultrasound for me. After the ultrasound I sat waiting, thinking I would once again be brushed off, but to my surprise, the doctor came in and told me that the cyst had tripled in size, and since it had grown so fast, they had reason to believe it could possibly be ovarian cancer. After hearing that, I zoned off if I am being honest. I was in total shock that I could be 19 years old with ovarian cancer. Once I finally came too, he was already done speaking with my mom, and before I knew it, I was going downstairs to get a CA-125 blood test and driving to a gynecologic oncologist the next day for emergency surgery.
After tumor marker blood tests and signing a lot of documents, I was having a surgery to remove the cyst from my ovary, not knowing if they would be able to save my ovary. When I woke up from surgery, I heard my parents tell me it was not cancer, but it was endometriosis and that the doctor was able to remove the cyst without damaging my ovary. I had heard about endometriosis before this, and I knew it ran in my family, so I was not completely surprised to hear this. I was happy to finally have a diagnosis, but I knew endometriosis had no cure, and that I would be dealing with it for the remainder of my life.
During my post-op, the oncologist told me that they tried to remove some of the lesions in my pelvic area while they were there, and that the next steps were to refer me to a specialist instead. My pain relief only lasted a month, and I decided to see a specialist a few months later to see what they could offer me. They needed my operation report and pictures to determine what the next steps were for me, but the oncologist did not take note of anything endometriosis related, and never took any pictures either. Again, this left me super frustrated, but I will go into this more in a later post.
With no data to come up with a plan, I had no choice but to have a second surgery where my specialist would check everywhere for lesions and remove everything they could. By this time, I had done a lot more research and realized that endometriosis could grow everywhere in the body besides the spleen, and since my oncologist insisted it was only in my pelvic region even though I had symptoms of thoracic endometriosis and bowel endometriosis, I was concerned they never looked in the first place for it.
After the second surgery, I woke up to only two incisions thinking there was hardly any endometriosis, but unfortunately the doctor came in and informed me that I had stage four endometriosis, and it was found on my appendix, diaphragm, bowel, rectal surface, abdomen, pelvic region, ovaries, and fallopian tubes. He then told me that he didn't remove anything this time and needed assistance in removing my appendix, so I was scheduled for a third surgery. The surgery is scheduled for January 19th 2021.
It took six years total from when I first started showing symptoms to be fully diagnosed with stage four. Six years is way too long, but I know most people don't receive a diagnosis for much longer. I am not happy I have this terrible disease, but I am happy that I have a diagnosis at an early age. Now that I know exactly what my status is with my endometriosis/adenomyosis, I feel both relieved and stressed at the same time. Some days, I feel beyond frustrated that this is what I have to manage now, but some days I feel grateful that I get to share my experience and help others on their own journeys to diagnosis.
If you made it to the end, I appreciate you reading through my story. <3
Stay safe and keep advocating for yourself! -Sam
