It's inevitable now...

Hello, everyone. 

Those who have followed my blog posts regarding my illness have come to learn that I have been booked to have a colonoscopy. I was referred for this procedure in February, and just last week I met with the doctor that will be doing my procedure. Because my surgery is dependant on the results of my colonoscopy, I've gotten in stat and the official date of my hell procedure is June 18th. 

I am less than excited. As you can imagine, I'm not very excited to go to the hospital only to be violated by a probe up my butt. NOT COOL, MAN. 

And now for some colonoscopy humour:

Is this all TMI? Yes, I do think so. But here's the thing. I'm having a colonoscopy because I have a disease called Endometriosis. My Endometriosis is aggressive and extensive, and it has spread throughout my pelvis and onto my bowels. I will be having surgery with a gynaecological urologist because my doctors suspect the endometriosis has infiltrated my bladder and/or ureter. 

So yes, sharing with you all that I'm going in for a colonoscopy is a little bit TMI (frankly I'm not too proud to declare to the internet that I'll be having a probe up my butt) but the thing is, I want to raise awareness for endometriosis. I want everyone to know that this disease isn't just bad cramps, and that it has detrimental effects on the rest of the body.

So while I wish to parade about my specialist's office with a picket sign that says "NOT FAIR" I realize that I'm saddled with a disease without a cure and that's just the way it is. I can learn to manage my pain, but for now, that's about all I can do. 

Have you had an experience with a colonoscopy? If you have, feel free to share in the comment section below!

Almost done!

Hello, everyone! 

I am currently freaking out and really excited- both at the same time- because I am almost done school. Today was technically the last day ever in my journalism program, but I still have some stuff to finish up. 

I have to wind up my internship, which was supposed to have ended a week ago, and I also have a big project to wrap up today. So close... but it feels so far. So I'm typing away like a mad woman, desperate to finish this program and never write another news story ever again.

me right now: 

What a great way to come out of a two year post secondary education. Learn how to do something with the training to make it one's career, and on the last day of classes decide I WILL NEVER DO THIS EVER AGAIN THANK GOD. And I wonder why I've never been praised for my attitude.

So I suppose this is a bit of a pre-celebratory post. I'm almost done, but before that happens and before I  can celebrate, I still have a lot of work to do. 

So if you'll excuse me, I have some last minute panicked typing to do. 

This is me.

My Chronic Illness, Illustrated

Back in September, I composed a delightful post titled My Chronic Illness: A Visual Journey. My struggle with Endometriosis effects many aspects of my life. Even though it's been a hellish ride and I struggle to keep it together sometimes, I always try to keep a sense of humor. Laughter is so very important! I'm not so sure about the whole "laughter is the best medicine" bit, but I do know for a fact that it helps with the healing.

Since I published my 30 Day Invisible Illness Challenge, I have been flooded with love and support from friends and loved ones. Unfortunately, my daily ordeals with this disease aren't limited to the month of March. It's year-round. And in this post, I want to detail every day life with a painful, incurable disease-- and I want to make it funny. So, without further ado...

My Chronic Illness: A Visual Journey Part 2

1.) When I realize that I have to go to work/school but I'm sore and tired: 

2.) When a doctor asks if I'll let him/her do a pelvic exam:

3.) When I start bleeding unexpectedly and remember I'm wearing nice panties:

4.) Trying to stick to the Endometriosis Diet: 

(and then one day later...) 

5.) Just when I think I'm starting to get better: 

6.) When a nurse asks if I'm ready to have an IV line put in: 

(but in reality) 

7.) When my pain killers aren't working so I mix a few:

8.) That time my doctor removed my IUD, injected botox into my abdomen and vajayjay, and then stabbed an intramuscular injection into my arm all in one miserable appointment:

 9.)When I'm camped out in the living room with painkillers, a heating pad, and snacks:

10.) When an awful pain flare sneaks up on me:

11.) When my boyfriend forces me to eat breakfast even though I'm nauseous

12.) After I cook a big dinner for company:

This blog is my diary (and I need to vent)

I saw my specialist last Thursday. He said that he was very concerned that I have a blood disease (I can't remember the name exactly) and he ordered a number of blood tests to see what was going on with me. After the dreaded closure time test, I waited a few weeks to see my specialist, all the while avoiding the bottle of Cyklokapron leering at me from inside the pantry. 

The blood tests confirmed that there is nothing abnormal about my blood. So my bleeding is a hormone issue. My specialist said to take 2 500mg tablets of Tranexamic Acid 3 times a day. It's taken a little over a week, but finally finally, my bleeding has stopped. The only downside is that the Cyklokapron (which I call the "Horse Pills" (because they're huge)) makes me very nauseous. 

I've been having a very, very hard time being productive lately. I have been absolutely exhausted these past couple weeks. I have been bleeding so much, and my blood pressure went from being 90 (which is considered abnormally low and the marker for hypotension) to 82. I've been feeling faint, nauseous, sore, light headed, cranky, and poorly. I have a ton of work to get done for my internship with a local magazine, but I'm struggling to concentrate. I'm only comfortable when I'm laying down, and when I'm laying down, I fall asleep. My biggest problem lately has been feeling exhausted. It doesn't matter how long I sleep or nap for, when I wake up, I feel just as exhausted as I did when I went to sleep. I feel like I haven't slept for ages, when all I've been doing is sleeping. What the hell. 

Yesterday I cooked an Easter dinner for my family. When everything was finally served and on the table, this was me: 

I don't like this hospital.

I see my specialist today, and it's an exciting day because we find out if I have a blood disorder or not. As it turns out, 500mg of Tranexamix Acid won't control my bleeding. So this appointment should be a curious one. 

But I don't really want to go. 

I'm just being a great big baby, to be honest. I just don't like going to see my specialist because he works out of a hospital and it's the same hospital that my grand mother died in when I was 13. Then my beloved papa died there in 2013. And when I'm waiting around for my specialist, there's almost always a "code blue". So I'm just sitting there all glumly and then... someones dies. 

It's no fun. That's why I like having my boyfriend go with me. The support is nice.

30 Day invisible illness challenge: Day 27

Day Twenty Seven

What's it like having a pelvic laparoscopy? 

Surgery is scary

I modified today's question, because surgery is almost inevitable if you have endometriosis. Hell, you can't even get diagnosed with the disease until you go under the knife. Nowadays, endometriosis can be treated with a pelvic laparoscopy. Laparoscopy refers to the use of a laparoscope to perform the procedure. This is leaps and bounds from the old use of a pelvic laparoptomy, where the patient receives a large incision, or "open surgery". Pelvic laparoscopies are "minimally invasive" the surgery is performed with usually two to four tiny "keyhole" incisions.

Still, surgery is surgery and there are many risks involved in pelvic laps. In a pelvic lap, you're put under general anesthetic, which has its own associated risks. To me, surgery is terrifying, and I am so thankful for minimally invasive surgery. I have had two pelvic laps, and I found them to be very painful. After my second surgery, I awoke in the recovery room in so much pain. I remember there was a sassy nurse that told me I was maxed out on morphine, but I was still so sore. I was pleased to have lost consciousness. The pain killers I take on a daily basis (like T4s and Tramadol) are "heavier duty" than the ones I was given in the hospital (I was given T3's which have half the amount of codeine than T4's) so in-hospital recovery from surgery #2 was paaaiiiiiiinfulllll. I couldn't imagine the pain following open surgery. 

A pelvic laparoscopy. No fun, but better than a laparoptomy.

I want to share with you guys what it was like to have surgery for endometriosis. It's kind of exciting, in a horrifying potentially life threatening kind of way. 

Before surgery, you have to fill out some forms. Mostly consent forms. Surgery, even the minimally invasive ones, have risks. Pelvic laparoscopies have a mortality of about 0.05%, according to surgery.com. Those are some good numbers. Though hemorrhaging is always a big risk in surgery. 

Before you go in for an op, your surgeon explains all the risks. They also talk about recovery, and what to expect. In all honesty, I get a bit overwhelmed at this point. In August 2013, my boyfriend took me to the Foothills Hospital for my 2nd surgery. I was in a ridiculous hospital gown and I met with my specialist (who was performing the surgery) pre-op. He put a hand to my knee, and we went over the procedure. Again, so scary, and so overwhelming.  

Surgeons always ask if you have any questions, and this is me, every time: 

As I said before, surgery is scary to me, and there are a lot of things that make me nervous. First and foremost, my biggest fear about surgery is "anesthesia awareness". What is this? Let the mayoclinic explain. 

Estimates vary, but about 1 or 2 people in every 1,000 may wake up briefly while receiving general anesthesia. The person usually doesn't feel pain, but is aware of his or her surroundings.
In very rare situations, some people experience excruciating pain in spite of general anesthesia. In this situation, because of muscle relaxants given prior to surgery, people aren't able to move or speak or make others aware of their distress. Some people may develop long-term psychological problems, similar to post-traumatic stress disorder.

This is terrifying to me, and it was on my mind before both surgeries. It's on my mind now, and I don't even have my next surgery booked yet. To me, this is more terrifying than not waking up at all. 

So surgery. What's it like? 

When you're admitted to the hospital, you have to do a blood and urine test. They're testing for pregnancy, etc. You can't eat or drink for about 12 hours prior to the procedure, so you're hungry and thirsty, and it's hard to provide a urine sample at that point.Then they put a stack of fancy hospital bracelets on your wrist, and you're taken to day surgery. Then you get even fancier when you put on the backless hospital gown. 

so fancy.

You're put into a bed, then a porter takes you to pre op. I got lucky and had a flaming gay porter take me to pre op for my first surgery. He was awesome, and we chatted flamboyantly about hospital stuff or whatever.

For my first op, the experience was a bit terrifying. Pre Op was a dismal room with sick patients laying beds waiting for their surgery. Everybody is terrified. You answer so many questions in this room. All the staff asks you the same question repeatedly: what are you having surgery for. And it's not because they're clueless-- even the surgeon asks you this. It's to make sure you're in for the right op, and to make sure you know what's going on. 

The operating room is the worst part. Operating "theaters" are extremely cold. It's like being in a meat locker (ok, not a meat locker, but it's so cold in operating rooms). There's always a lot of staff in there too. For my first surgery, I had to get out of the hospital bed and get on this super narrow stainless steel table. Above you are these huge lights, and all around you is strange and unfamiliar equipment. 

For my first surgery in 2011, the surgery prep was done by this wonderful granny nurse. She was old and so kind. She made me feel a bit less nervous. She put electrodes on my chest then she put an IV line in my wrist, and then the surgeons and doctors started coming in and milling about. I find operating rooms to be terribly scary. The metal table was cold, I had needles in my arms and electrodes on my bare skin. And then the granny nurse (bless her heart) put an oxygen mask on my face. She explained that it was just oxygen and I should relax. I cry before I go under. Both times, and even during my ear surgery as a child. Going under is scary and I dislike it. You're in a big, cold, scary room with beeping machines and doctors in masks are milling about. Then, a mask is on your face. The anesthesiologist injects a drug in your IV line, and for a moment, a very brief moment, you feel yourself slipping away.

After surgery #1 I awoke in the recovery room like a wild animal.  I awoke to a nurse trying to put disposable underwear on me. I kicked fiercely, trying to kick her. She got angry (I suppose I can see why) and said she just wanted to get some underwear on me. I passed out. I'm always in and out of consciousness in the recovery room, and never remember getting to day surgery. I pass in and out of consciousness there, until family arrives. After my second surgery, I awoke in the recovery room with a number of doctors looking down on me. The intern that had screwed up my IV line pre op was there, and doctors were saying "Danielle, we need you to breathe." I was confused. "Danielle, we need some big deep breaths from you." My legs were wrapped in these odd devices that squeezed and released, like blood pressure cuffs. I think they're used to prevent clotting in your legs post surgery. Again, "Danielle, breathe. She's not breathing." I remember thinking what are you talking about? I'm fine. I fell out of consciousness and awoke later to the recovery room staff talking about the Honey Badger youtube video. They were laughing and it felt like a dream. I saw one of my customers from the pet shop, who I had helped just the night before! He was part of the recovery room staff. We smiled at each other and he asked how I was feeling. He called me the Pet Store Girl (the name stuck, by the way).  

Waking up in the recovery room and seeing doctors surrounding you, fussing over you, telling you to breathe...

I remember feeling just awful after my first surgery. I had been in surgery for a little over 4 hours. It was a long operation. The tennis ball sized endometrioma I had in my left ovary had ruptured during surgery, so it took a lot of suction to clean the blood out of my pelvis. The surgeon didn't touch the endometriosis in my pelvis (which she described as being extensive) and I've been told that her not doing anything to treat my endo while I was in surgery is medical negligence.

When I come out of surgery, I drift in and out of consciousness for a couple hours. Then I wake up in day surgery, and it's time to investigate the damage. It's like inspecting yourself after a horrible accident. You take inventory of yourself and assess the damage. After both surgeries I had a tender, bloated tummy. In surgery they inflate your abdomen with Carbon Dioxide. The inflation makes room for the surgical tools and gives the surgeon a good look at your insides. After both operations my tummy was not only bloated, but bleeding. The incisions bled through the steri strips, gauze, and hospital gown. Not a pretty sight, considering the iodine stains your tummy yellow and there's usually bruising around the incisions.

After op #1, I vomited when I tried sitting up in bed. I was on constant heavy pain killers and I grew faint and sore when I was sitting up or on my feet. My father took me for a "shuffle" around day surgery. I leaned heavily on my IV line and I was pale and green in the face after a round. I had to stay overnight after that surgery. And let me tell you, overnight stays in hospitals suck. I had a grouchy nurse that night, and I was waking up every hour or so. Op #2 wasn't so bad, and I was anxious to leave the hospital as soon as possible. 

I discovered that I get a sore throat after surgery, and it's actually very common post op. When you're under general anesthesia, they insert a tube down your throat. The tube is called an endotracheal tube and it's necessary for the patient's breathing during surgery. They insert the tube before surgery, when you're deeply sedated. 

It's a really flattering look.

One thing that I learned that's kind of freaky cool is that your eyes are taped during surgery. My eyes were taped shut!? Why is that? It's to protect your eyes from drying out, and to protect them from any damage. Even in the case of a pelvic lap, there's a lot going on around your face. When you're in surgery, you're given some serious muscle relaxants. When you're paralyzed like that, you won't blink and your eyes will fall open. 

I feel you, bruh.

Surgery is weird. Right before you go under, you're suddenly so aware of how vulnerable you are. You look at your anesthesiologist and think oh christ my life is literally in your hands. Don't fuck up. You know that you're naked and vulnerable on a little table, tubes in your throat, eyes taped shut, and your vitals on a beeping screen. It's..... scary, to say the least.

My Stupid Surgery Album 

My bloody incisions are healing a couple days post surgery, 2011.

Post-op in 2013. I was really high on morphine. Like, blitzed.

Yeah, my boyfriend gave me a hickey right before surgery. The doctors found that a bit funny.

I had only 3 incisions for my 2013 op. I had 4 for my first.

My bloated, bruised, and tender tummy post op 2013. The X shaped scar is still very visible.

For some reason, I got a lot of bruising around my incisions in 2013.

Now, I have 7 surgical scars on my tummy. I'll be having a third operation soon, but the surgeon mentioned reusing old entry sites, so hopefully I won't get any new scars. Surgery is very scary, but it's worth it. 

The operating room, named “Theater 612”, is cold. I lie on the narrow bed, staring up at the large, bright lights meant to illuminate me; the patient. The only sounds I am aware of, in my state of fear, is the air-conditioning and my own pounding heart. I feel a lump rise in my throat as a nurse comes to my side and takes my blood pressure. It is so cold in this room. I am self-conscious because my breasts are pointy beneath this thin hospital gown and my hair is standing on end.  I can’t bring myself to further explore this room with my eyes. I stare at the enormous lights, far too bright, and focused on calming my pounding heart. Another nurse, an older woman, is by my side and warns me that “this will be a bit cold.” I don’t watch as electrodes are placed on my chest. I’m sure she can feel my heart pounding wildly. How can she not? I’m sure all my arteries will burst, my heart is beating so hard.

The electrodes are secure on my chest, and a young man is at my side and tells me he’s here to insert my IV. I watch as a long, thin needle is pushed onto the top of my hand. The pressure is painful and I roll my eyes to the side in an attempt to avoid tears leaking from my eyes. He withdraws the needle, and slips it instead into my wrist. This is more comfortable, and I am calm as he tapes the tubes to my arm. My surgeon stands at the foot of the steel bed, a tired smile passes over his face. He puts his hand on my cold foot, gives it a squeeze, and asks if I’m ready.

“Take good care of me” I say, my chin trembling pathetically. He smiles under his gruff grey mustache. I notice the deep lines in his weathered face and I try to relax.

“Of course” he says, and then the anesthesiologist puts a mask over my face.

“Breathe deeply” she says, and tears leak from my eyes. My surgeon is now holding my hand, and I give it a squeeze. Deep breath in, concentrated oxygen, and now I’m light headed. I squeeze his hand, I think of my boyfriend, of riding my horse, I think this will be over soon. My head is light. I’m dizzy. I’m floating.

Backwards Latin

Yesterday my boyfriend took me to meet my new surgeon. 

I used to be relieved when a doctor would acknowledge that there was something wrong with my body. It was a kind of relief, this sensation of oh thank god, I knew I wasn't crazy! Yesterday after my appointment, I stood in a hot shower crying, wishing that everything was actually in my head. 

The appointment wasn't necessarily bad, but it was a jarring reminder that I am not healthy and there is something quite wrong. My blood pressure came back abnormally low. While a healthy blood pressure is above 110, mine was at 90. The culprit? Blood loss. I've been slowly bleeding out for months.

The surgeon was nice, she's this petite smart little Asian lady. She seems smart, and we discussed surgery. I thought that I could like her, but then she said she wanted to do a physical. I HATE PHYSICALS. 

Me when the surgeon said she wanted to do a physical exam:

(I wish I could have actually vanished in a cloud of smoke)

She performed a painful physical (when I say painful, I mean my body turned ice cold and I sweat so much the paper covering the examination table soaked through). She said she could feel what she thinks is endometriosis. This is odd, I've never heard of a physician being able to actually feel endometriosis in a physical exam before, but hey, whatever. 

We discussed surgery. She said, "surgery is definitely on the table, it's just a matter of when we do it." She doesn't want me to have numerous operations, which is fair. Surgery comes with so many risks. But I'm just sick and tired of being sick and tired. She said that while she would prefer to perform my operation right before we're ready to start trying for children, we'll make out decision after the results from my colonoscopy are reviewed... which will be after September or October.

Then she suggested I have babies now. 
I am embarrassed to admit that I had a full blown panic attack (complete with hyperventilation) in the car on the way home. Babies? Now? ....no. I'm not ready. 

I fear this is how I will be as a mother:

It was such a stressful appointment, I've been feeling pretty bummed out since. I can't seem to pull myself together. I've been feeling tired, achy, and mopey today. I need to pull myself out of this. I'm surrounded by so much love and support that I don't have much reason to be feeling a bit sorry for myself. I'm trying to cheer up. 

BUT BABIES. NO. NOT NOW. Terror runs through my body like an icy cold electric jolt when I imagine myself embarking on motherhood within the next couple years.  

When the surgeon suggested having children now, my mind turned to mush and I was like:

At this point, I realized, I think that perhaps an exorcism may be a viable treatment option for endometriosis. I'm not even kidding. Why not give it a whirl? An exorcism. Sure. Let's give it a shot. Surly it can't be worse than Leuprolide! 

30 Day invisible illness challenge: day 23

Day Twenty Three: 

Want to know a secret? One thing people say that gets under my skin is: 

"It's in your head"

This is a tough question. There are a number of things that people say that drive me absolutely crackers. Some of the big ones include: 

1. My aunt's cousin's sister's friend had endometriosis and she's cured after trying this homeopathic herbal tea. 
2. Endometriosis isn't a big deal and it's easy to treat. 
3. Just get a hysterectomy. 
4. You just need to get more exercise. 
5.  You should try this doctor 

I understand that most of these suggestions aren't malicious and they're said because the person genuinely cares about me and wants me to feel better. But here's the thing: 

1. Good for your aunt's cousin's sister's friend.Wow. Amazing. She should write a book. Because there's no actual cure for endometriosis. 
2. Saying that endometriosis is no big deal and is easy to treat is a backhand slap across the face. It is a big deal because it's negatively impacted my life and I've been suffering for over 9 years. And it's not easy to treat- I've been on nearly every treatment, including a cancer treatment, and none have worked. 
3. I want to have children. And a hysterectomy isn't a guaranteed cure for the disease- it can still come back, even after the uterus and ovaries have been removed. 
4. Whenever I try to get exercise I'm reduced to a ball of tears and agony. Yoga literally provokes bleeding in my digestive tract-- I'm awaiting a colonoscopy thanks to a failed attempt at getting my abs back.
5. I hate switching doctors. I've been through so many, and in Canada, you get put on an enormous wait list and it takes months, even years, to see a specialist. I've swapped doctors so many times, I've had my files and referrals lost so many times.... unless this new doctor is Jesus himself I'm not interested in waiting over 6 months to see him.

But the biggest one, the holy grail of all the unsolicited opinion that I have received, is: 

It's in your head / it's a mental projection / an attitude change will heal you

I have, on so many occasions, truly believed that this disease is indeed in my head and I am actually making this whole thing up. I've bawled my eyes out in front of my specialist, crying about how I'm crazy and I've imagined this pain and it's ruining my life (he prescribed sedatives after that visit, actually. FML).

But here's the thing. 

When you tell a sick person (whether it be cancer, endometriosis, lupus, whatever) that if they change their attitude or that their pain is in their head, you are severely hurting them. And here's why: you're putting the blame on that person. 

You would never tell a person with a broken leg that by changing their attitude they will heal themselves. That's ludicrous! Yes, a positive attitude helps lift one's spirits, but it won't heal their broken leg. It's no different with an invisible illness. When you say that an attitude change will heal my disease, you are inherently saying that my current mental state is causing my suffering. This is an enormous burden. I'm already suffering with pain on a daily basis, and I miss feeling healthy and active. I am optimistic about my future, but I am also realistic about it. I know that I have an aggressive case of endometriosis. It has already grown back and spread with a vengeance after being removed in surgery. 

When you have a broken leg, you see a doctor and get a cast and you heal. When you have endometriosis, you see a doctor, have surgery, and in a year the disease comes back. 

That's the reality of it.

Yes, I believe that diet changes, physical activity, and positive thinking and emotional wellbeing contribute to a happy and healthy life. It does positively impact your body and helps you heal. However, positive thinking and a healthy outlook won't cure the disease. 

After a close loved one suggested to me that an attitude change would cure my illness, I made an appointment with my specialist. I was particularly disgruntled, as I had taken this advice to heart and I became convinced that it was my fault that I was ill. My doctor, this gruff, grey, mustached fellow, listened to what I had to say and dryly he replied "well kid, that's a tall order to fill." He explained to me that for an unknown reason, endometrial tissue was displaced in my pelvis. I experience severe inflammation, internal bleeding, and the binding of internal organs. A co-morbid condition causes tight muscles and constantly firing nerves. This is why I'm in pain. Yes, he agreed, that stress can worsen pain, so stress reduction and emotional health are important in pain management. What I can't do, unfortunately, is heal myself with a jolly attitude and a pleasant outlook on life.

I understand that I'm not doing anyone any good when I'm in one of these moods:

When my aches and pains have aches and pains, this is me.

It really gets to me when it's suggested that my pain is something that I'm imagining. I seriously wish to use a baseball bat to smack this person around a bit and then boldly and ignorantly inform them that the pain they're feeling is in their head. But, apparently, causing bodily harm to another individual is illegal, so I can't really do that...

I actually had a doctor tell me that my pain was made up. He was very old, and very arrogant, and he told me that my pain was a mental projection. He said that at 18, I was too young to have any gynecological problems. I actually believed this for a while, and I was convinced that I was crazy.

Then I was diagnosed with this. 

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