Invisible illness 30 Day Challenge: Day 2

Day Two: 

I was diagnosed with it in the year... 

Today's "challenge" question is what year was I diagnosed with my invisible illness. 

I was diagnosed with endometriosis in 2011, when I was 19 years old. Although I have had serious pain off and on throughout my teenage years, when I graduated from high school my pain increased to a point where it was frightening. Literally, on the night of my graduation, I started running a fever. I remember being in my grad dress and standing under the hand dryer in the bathroom. I was shivering violently and I felt like death. I just assumed that I had a bad flu.

Graduation, June 2010. I'm in in the black dress on the far right.

I ran a fever for days on end, to the point where I had a fever rash all over my chest. The rash was so bad my father thought that perhaps I had the measles. Pelvic pain and flu-like symptoms persisted, the pain worsening all the time. I knew that something was seriously wrong, and made an appointment with my GP. At first he prescribed me a bottle of Naproxen for pain and sent me home. Pain persisted and I wanted answers, so I went back. He suspected that perhaps I had stomach ulcers, so I was tested for those. When the ulcer test came back negative, I gave up. Perhaps I was crazy. The pain continued, so eventually I got a referral to see a gynecologist. I despise telling this story, as the memory still leaves a bad taste in my mouth. 

The gynecologist was in his late eighties, and had been pulled out of retirement because of the lack of specialists in the city. He was so old and frail looking I feared he would collapse and die during the appointment. At the time I was 18 years old, a virgin, and utterly terrified to be seeing a gynecologist. I explained my symptoms to him, and began asking me questions about my family life. He asked if I was getting along with my mother and my brother. I said "with all due respect, how are my relationships relevant to my pelvic pain?" and he replied that I was too young to have any gynecological problems, and my pain was likely a mental projection. He was telling me my pain was in my head. Nevertheless, he gave me a physical exam and concluded that nothing was wrong. I left his office in tears. First and foremost, I felt violated. Second, I felt crazy. It's all in my head? I'm crazy, I must be crazy.

A couple months went by and my pain continued. I saw my GP and requested a referral to another gynecologist. The new gynecologist was a woman, and she requested that I have an abdominal ultrasound done. 

My first ultrasound concluded that I had an ovarian cyst in my left ovary. I was relieved. Words cannot describe how relieved I felt to finally have a reason for my pelvic pain. I did a lot of research on ovarian cysts, and I was only slightly worried. Dr. C put me on birth control pills for the first time in my life and decided that we would monitor the cyst. 

Over the course of the year, my pain worsened to the point where I couldn't participate in much physical activity. I was a talented horseback rider, and I was jumping close to 5'. I loved riding and it was hard to lessen the amount of time I spent in the saddle. Regular ultrasounds showed that my cyst continued to grow, despite the different pills my doctor was putting me on. Finally, while hiking in the mountains in July 2011, my pain worsened to the point where I was doubled over the bathroom counter, moaning and crying in pain. I managed to make it down the stairs, pale as a sheet, and told my parents that I needed to go to the hospital. My dad drove me to the ER, meanwhile I carried on rather Mr.Orange-like, convinced my pain would kill me. 

Mr. Orange and I are spirit buddies. 

I received amazing care in the Fernie's ER. The ER doctor, whom I fondly remember, was conserned that I had either ruptured my cyst, or I was experiencing ovarian torsion (she feared my cyst had gotten so large it had flipped my ovary over, pinching off its own blood supply). An emergency ultrasound revealed that my ovarian cyst was still intact. My pain gradually subsided, and I returned home without an answer. 

When I arrived back in Calgary, I told my gynecologist that I wanted my ovarian cyst removed. It had grown to the size of a tennis ball, and I was in constant pain. The doctor agreed, and I was scheduled for surgery in October 2011.

October finally rolled around, and I was very nervous excited. I was sure that once my cyst was surgically removed, I could get my life back on track. I could be athletic again! I could ride horses without a care in the world! Best of all, I wouldn't be in pain on a daily basis. 

My operation lasted a little over 4 hours long. When I awoke from my surgery I felt absolutely awful. If you've ever been under general anesthetic, you understand the confusion and pain when you wake up in the recovery room. I remember at one point screaming for my then-boyfriend. I passed out. I awoke again to a nurse trying to put disposable underwear on me, and I just about kicked her in the face. She was surprised (that I woke up? That I tried to kill her?) and tried to calmly inform me that she was just trying to put some undies on me. I passed out. 

Accurate depiction of me in the recovery room:

After waking up for real, I was so alone and so scared. I had to call my family to tell my dad that I had finished my operation, and that I was desperate for a familiar face. I remember lifting the hospital blankets and looking at my tummy. I was bloated, soaked in iodine, and bleeding through the gauze. The incisions were bleeding through my hospital nightdress, and I was horrified at the sight. I tried to sit up, and promptly threw up. 

My bloody incisions and bloated tummy a couple days post-op

Before my father arrived, an intern who had been present during my surgery came to visit. I remember her, despite being heavily drugged and very groggy. She was so sweet, and she had dark brown hair like me. She introduced herself, then told me that during my surgery my cyst had ruptured and they had to suction the blood out of my pelvis. She told me that I had moderate grade endometriosis. I remember her face when she told me this, she looked sad, and I was confused. I had no idea what endometriosis was and frankly, I was too high on morphine to care. I learned that my ginormous cyst was actually an endometrioma. My laparoscopy identified endometriosis present on my ovaries, fallopian tubes, posterior cul-de-sac, and abdominal walls. I also had some mild adhesions. I had to stay in the hospital over-night, and I was so lonely that I named my IV drip. His name was Percy, in case you were wondering.

An image depicting an endometrioma. Mine was tennis ball sized.

I healed up well after my surgery, but had recurring pain. In my post-op appointment, my gynecologist gave me an explanation of endometriosis, and she told me that unless I started trying for children very soon, I wouldn't be able to conceive. I was crushed. My mother and I burst out crying during that appointment, and I remember the doctor handing us a box of Kleenex. It was so brutal. The doctor suggested I stay on my birth control pill for the time being, and if my pain didn't stop, we would try an IUD called Mirena. Sure enough, my pain didn't stop (it worsened, actually) and in February 2012 I was (painfully) fixed with an IUD. The insertion was brutal. I was still a virgin at the time, and I found the procedure to be excruciating. It was so painful in fact, I threw up in the car on the way home.

Since my diagnosis, I switched to a different doctor, as the gynecologist who performed my last surgery fed me negative, discouraging tales about my fertility, and offered little to no treatment and pain management options. 

I've had a total of two pelvic laparoscopies (I'm currently awaiting my 3rd). My second laparoscopy was done after I had done a Lupron treatment. My pain was so bad, my doctor had me booked in for surgery within a few weeks. Second surgery revealed serious adhesions, binding my left ovary, a pelvic ligament, and my sigmoid colon together. It also showed endometriosis on my abdominal wall and left ovary. It was a painful op, and I experienced bruising around my incision sites, which hadn't happened after my first surgery.

Bloated, bruised tummy after my 2nd surgery in 2013

Achy incisions calls for percocets and such

Fun times at the hospital, post 2nd op

Beloved Sunny kept my company while recovering from my 2nd op

I've undergone a number of painful and awful treatment options. I've had 2 different IUDs, neither working to my advantage, and I've been on the terrible cancer treating drug Leuprolide twice. I've even had botox injected into my abdomen and my lady parts in an attempt to relax the muscles and ease the pain associated with a co-morbid condition called Allodynia. That is the story of my diagnosis. I'm desperately hoping my next surgery will offer me relief from the pain I experience on a daily basis. 

What the inside of my pelvis looks like (I think):

Thank you so much for reading this blog post about my diagnosis. I hope that by sharing my story, more people will understand that endometriosis is more than a "bad period" and it really is a terrible disease. We need a cure, or at the very least, viable treatment options. I've been told by my doctors that removing my left ovary may be an option for me in the future if endometriosis and adhesions keep returning to that site. I don't want any other women to be faced with organ removal/hysterectomy as a treatment. We can do better than this.

Thank you for reading 

-Captain Lakie