Here we are again. It's that time of the year when for the next seven days my blog is dedicated to sharing stories about Endometriosis to raise awareness. From March 3-9, 2017, I will be featuring a different story each day.
As I did last year, I reached out through social media to my Endometriosis groups for help in raising awareness for our shared disease. Michelle responded to my call for submissions and I am happy to share her story with you.
I'll start with the night that sent me to the ER, because that's when everything really came together for me.
I was on day 3 or 4 of my period, so the timeframe of when I would have my most severe cramps had passed. I had fallen asleep on the couch around 11pm, and then headed up to bed around 2am. Around 4am I was woken out of a dead sleep with the most severe pain in my abdomen I had ever felt. What scared me the most was that this pain did not feel like cramps, I knew all too well what that feeling was. This was a constant stabbing that would not go away, no matter what I tried to do. I quickly googled the symptoms of appendicitis, me thinking this could be the only logical explanation for my pain. I came to the conclusion that this must be what's happening, and I was not about to have my appendix burst at home.
Now if you knew me, you'd know how big of a deal it was for me to make the decision to go to the ER in the middle of the night. I had only been to the ER twice in my life (for myself), and I honestly don't remember either time (2 and 7 years old). Once I decided I had to go, I woke up my wife and informed her of what was going on. We hastily got dressed, cleaned off the car (of course this was in February in the middle of a snow storm), and made the treacherous trek to the hospital.
Thankfully when we got there the ER was completely dead so I was taken straight back to a room. They got me started on an IV and administered me some pain meds. A doctor was soon in to see me and I explained the type of pain I was having. He decided a CT scan would be the first step to determine what was causing me all of this pain. From the scan, they ruled out appendicitis, but they did see that there was some sort of mass on or near my right ovary. A transvaginal ultrasound was then the next step. During the ultrasound, the tech seemed to be a bit confused. She couldn't find my right ovary. She had to leave the room to go find her superior to confirm what she was seeing.
They took me back to my room and I was left hanging in the balance as to the results of the ultrasound until a doctor came in to talk to me. I had a 6cm chocolate cyst on my right ovary. And the reason the ultrasound tech couldn't see my right ovary was because the cyst was completely covering it. They didn't tell me anything about what could have caused this cyst to form, they just said to make an appointment with my regular OBGYN asap. I left the ER with a script for 600mg ibuprofen for pain, which was kind of laughable to me because I have been prescribed 800mg ibuprofen for period cramps for the last nine years.
Once I was home and relaxing, I started researching what a chocolate cyst was and the one thing that kept showing up was that it could be a result of endometriosis. I had never even heard that word before so I then of course did my research on what that was, and it was like the lightbulb finally went on.
All of these years, 12+ years of symptoms, and I finally had a name to put to them. Now granted, I did not have many of the telltale symptoms; missed and irregular periods (I have been a consistent 26-28 days since the day I started my period at 12 years old) and heavy periods. But the symptoms I did have far outweighed the ones I didn't; severe cramps during my period (every single time without fail), bloating, cysts (even though this was the first time I had had a cyst this large and that caused me this much pain, I had had smaller fluid filled cysts before), extreme fatigue, and pain during sex. Everything was starting to make sense.
The day came for the follow-up appointment with my regular OBGYN. She went over the CT scan and ultrasound results with me and gave me my options. She could start me on an oral birth control pill to see if it would shrink the size of cyst. Or we could just keep an eye on the cyst and see if it would shrink on its own. Now, from doing my own research before this appointment I knew that chocolate cysts rarely went away on their own, that if they were over a certain size (usually 4-5cm most doctors recommend to have them surgically removed), and that if that type of cyst were to burst, an emergency surgery would be required and the results would not be pretty. I voiced my concerns to her, that I did not believe this cyst was going to shrink on its own, and that I felt most comfortable just having the surgery to remove it. To my surprise, she was not hesitant at all in agreeing with me. We decided to schedule the surgery that day for April 6th(about 2 months away), and we decided that I would have another transvaginal ultrasound a week before my surgery to see if the cyst had shrunk at all on its own.
Those next 2 months were torture for me. I had to endure two more periods with excruciating pain (made worse by the cyst that was still there), and the anxiety of knowing that that cyst could burst at any moment almost put me over the edge. The day finally came for me to have my ultrasound to see if the cyst had shrunk at all, and after my doctor went over the results with me, we determined that we would be moving forward with the surgery. The cyst had only shrunk about half of a centimeter, still leaving it at 5 1/2cm.
As happy as I was to hear that I was finally going to have time ticking time bomb removed from inside of me, I was also terrified. I had never had surgery in my life, I had no idea what to expect.
The day had finally arrived, April 6, 2016. I was the first scheduled surgery of the day for my doctor so I was there bright and early. Which I was grateful for because it didn't give me much time beforehand to get too nervous. My mom and then fiancé (now wife) were there with me and I couldn't have been more thankful for them being there to support me. Before I knew it, they were wheeling be back to the operating room and the last thing I remember is getting up onto the operating table from the gurney.
I remember waking up in the recovery room with terrible abdominal pain, I was still pretty out of it but I remember the nurse putting a really heaving heating blanket or pad on my abdomen and she gave me a pain pill to take (I didn't know what I was taking at the time but later found out it was Percocet). I think I spent about 2 hours in the recovery room before I was allowed to see my mom and wife. Once they got me dressed and I was a bit more with it and aware of what was going on, my doctor went over the results of the surgery with me. She found stage 4 endometriosis on my ovaries, fallopian tubes, and on the outside of my uterus. As much as I was expecting a diagnosis of endometriosis, I was not expecting it to be that severe.
My recovery from my surgery went about as well as could be expected. I had my follow up with my doctor 2 weeks later and she gave me a clean bill of health. We together decided that the next course of action I should take would be to do a 6 month treatment of Depo Lupron shots. Some of the side effects seemed worrisome to my family, but in my heart I knew this was what was going to work best for me as far as giving my body a rest and letting it heal and hopefully preventing any endo from growing back.
I received my first Lupron shot about 3 weeks later and I can honestly say for those 6 months that I was on the shot, I felt the best I had in a very long time. I only had breakthrough bleeding with moderate cramps once, and when I first started the shot I experienced extreme mood swings and irritability, but other than that I really had a good experience being on this medication.
When the 6 months was up, it was time to come up with what my next course of treatment was going to be. We decided on the Seasonique birth control pill which would only give me 4 periods a year (yay!). I'm currently on my fifth month of being on the birth control and everything seems to be going well so far. With my first period I had after starting the birth control I had terrible stomach and lower back pain, I spiked a fever, and I actually had to miss a day of work. But if I only have to deal with that 4 times a year as opposed to 12, I'll gladly take it.
All in all, I'm doing pretty well today. The symptoms I experience almost every day are bloating (most days I look like I'm 4 or 5 months pregnant, loose flowing shirts and leggings have become my best friends), I usually have a minimal degree of abdominal/stomach pain, and I still experience fatigue. Even though I was diagnosed with stage 4 endo, I quickly learned that the stage you are diagnosed with does not equate to the level of pain you feel and how often you feel it. I am extremely lucky that I usually only experience the majority of my pain the week before and during my period. My biggest fear now is that I will have trouble getting pregnant, but my doctor assured me that everything looked to be in perfect working order when she did my surgery and that I should have little to no problems getting pregnant when that time comes.
Being diagnosed with a chronic illness made my life do a 180. I had been having most of these symptoms for 12+ years, but I could now finally put a name to them and start to try to treat more than just the period cramps. My biggest hope is that this disease starts to receive more exposure and federal funding to possibly find a cure and that girls become educated at a young age as to what endometriosis is and that it's not just "bad cramps".