|Source of photo unknown|
If you don't have endometriosis, or know someone who has it, you probably don't know what this is, or why there is a month dedicated to raising awareness about it.
Well, allow me to give you some facts about endometriosis (source: the Endometriosis Foundation of America):
- It is a reproductive condition that affects women. The endometrium, the lining of the uterus, grows in places it shouldn't within the pelvic and abdominal cavities (i.e., the ovaries, the bowel, the fallopian tubes, the area just behind the uterus). And just like the endometrium thickens and sheds through menstruation every month if an egg is not fertilized, so too do these little spots. Except unlike the endometrium, they have nowhere to go. So they just collect there, inside these various spots outside of the uterus, and form lesions. Lesions which often lead to painful side effects, like bloating, severe cramps, heavy menstrual bleeding, and painful sexual relations.
- Most seriously, endometriosis can often lead to problems conceiving, or worse, infertility. In fact, 30 to 40% of women who suffer from this condition are unable to get pregnant, giving endometriosis the dubious honour of being one of the top three leading causes of infertility in women.
- The condition is often misdiagnosed as bad PMS, ovarian cysts, irritable bowel syndrome, or pelvic inflammatory disease.
- The average age at which women are diagnosed with endometriosis is 27. When you consider that the symptoms manifest themselves most painfully during menstruation, that is a lot of years to live in pain without knowing what is wrong.
- 176 million women worldwide suffer from endometriosis. To put this in context, in 2010, 1.5 million women worldwide were diagnosed with breast cancer (Source: Worldwide Breast Cancer).
- Endometriosis is not perceptible by ultrasound. It can only be diagnosed with laparoscopic surgery.
- There is no consensus as to the causes of endometriosis. Is it hormonal? Is it genetic? We don't really know.
- There is no cure for endometriosis. Yet there are a number of treatments. These include hormonal contraceptives, steroids to induce menopause, laparoscopic excision to remove the lesions, and as a last resort, full or partial hysterectomy.
I have endometriosis.
I would not normally use my blog to talk about something quite so personal. I prefer this to be a spot to tell more humorous stories, to make you laugh, or at least shake your heads and question my sanity. But then again, I didn't know that it was Endometriosis Awareness Month until I saw my Twitter and Facebook feeds. And to raise awareness, one can't be silent. Besides, I have been cooped up at home for 4 days now, because, in extremely fitting timing (a coincidence, I assure you), I just had my third laparoscopic excision surgery a few days ago. And there is only so much Netflix a girl can watch while she convalesces at home with her dog watching over her (especially a Canadian girl, because you Yankees get way better shows on your Netflix than we do). So I might as well tell a little story. It's not a funny one. But maybe it will make you think a little bit more about women's health issues. Which is never a bad thing.
Compared to most women, I was diagnosed relatively young, at the age of nineteen. However, my journey with endometriosis began a few years before my diagnosis. It began, in fact, when I started my period in the eighth grade. It was heavy and messy. It was irregular. It was extremely painful. None of my girlfriends seemed to be in that kind of pain. Yet there I was, begging my mother to let me stay home from school once every month-ish so that I could curl up with a hot water bottle and a handful of Advil. My mother worried. She brought me to the doctor. "On a scale of one to ten," he asked me, "what is your pain." ""Nine and a half," I whimpered. The doctor smirked a little, looked at my Mom, and said, "Don't worry, Julie. Teenagers are always a little melodramatic. Your daughter just has bad PMS."
A few years later, when I was sixteen, I was rushed to the hospital in the middle of the night with extreme abdominal pain. It hurt so much that I could not sit, lie down, or stand up without wanting to scream. Although I had just started my period, the level and location of the pain had us all convinced that my appendix was about to burst. I was even prepped for surgery. But when the test results came back, my blood cell count showed no sign of infection. The doctors and nurses scrambled to reassess. "Describe the pain," the ER doctor said. "It feels like someone is cutting my insides with a knife," I said. They kept me in the hospital for three days, poking and prodding me and doing all sorts of tests. When they let me out, the doctor said, "Maybe you had a ruptured cyst on your ovary. Or maybe you just have really bad PMS. But there's nothing else wrong with you. Advil usually helps cramps. Next time, try that before you come to the hospital." He sent me home.
My mother recounted this ordeal to one of her best friends. Rhonda was a nurse. She also suffered from endometriosis. She had it so bad that at the age of 25, she had a full hysterectomy. "She has all the symptoms, Julie," Rhonda said. "You've gotta push them. They won't take her seriously because she is so young. But if you don't push now, she could end up like me."
My poor mom had no idea what to do. I mean, we lived in a small town in Manitoba. It's not like we had a bunch of doctors that we could turn to for second opinions. But she tried. She talked to our GP, told her about her friend who had endometriosis and lost her uterus at age 25, and asked for a referral to a gynaecologist. "Don't be silly, Julie," the doctor said. "She's far too young. Women in their thirties get endometriosis, not teenage girls. She just has bad PMS. Let's put her on the pill and call it a day."
I went off to university. The pain continued. On more than one occasion, in the middle of the night, I had to call a taxi to rush me to the emergency room, because I would wake up in abdominal agony. Every single time, they asked me the same questions: "On a scale of one to ten, what is the pain like?" and "Describe the pain." Every single time, I answered "Nine" or "Like someone is stabbing me with a knife from the inside." And every single time, they gave me a couple of extra strength Advil and sent me home.
I started to read about endometriosis on my own. I tracked my symptoms, what I ate, how it impacted me. And I just knew that I had it. So I made it my mission to find a doctor who would take me seriously. I went to six of them, trudging along my symptom journal to show them proof that this was more than just bad PMS, that this wasn't just in my head, and that I lived my day-to-day life in real and considerable pain. None of them believed me. All of them sent me away.
And then came doctor number seven. Like all the others, she started into the same speech: "Why on earth would you think you have endometriosis? You are far too young for that!" Only this time, I would not, could not, accept no for an answer. With anger dripping from my voice, I told her that I was sick and tired of everyone telling me that I was too young to know what was going on with my own body. I told her that it was unfair that all of these doctors asked me to just accept my pain and live with it. I told her that I wasn't asking her to do the diagnostic surgery just so I could get out of doing a couple of mid-term exams. I told her that I knew that something wasn't right with my body and more importantly, that I deserved to know what it was. And I told her that I was scared. Scared that if it took me another ten years and thirty more condescending doctors like her, I might end up like Rhonda.
"Do you want children," the doctor asked?
"I don't know," I screamed. "I'm too f$#?ing young to know. But I'd at least like to preserve the option."
So she agreed. A few weeks later, at the Ottawa General Hospital, I woke up in the recovery room, groggy as hell from the anesthetic, when a nurse handed me a note that said, "You have stage 2 (of 4) endometriosis. Lesions on your ovaries and in your cul-de-sac (the area behind the uterus). We cauterized them with the laser. Make a follow-up appointment for 4 weeks from now and we'll discuss next steps."
I cried. Yes, I was sad. But there were tears of joy mixed in there. As misplaced as joy sounds when one is diagnosed with an incurable condition, that is indeed a big part of what I was feeling. That, and relief. I wasn't crazy. It wasn't "just bad PMS". It was a real condition with a real name, which meant real treatment options and real chances of feeling better. It meant hope.
And, I would discover, diagnosis would also mean experimenting, frustration, continued pain, and a whole lot of unknowns. Because that's the thing about endometriosis. What works for one woman doesn't work for another. Removing the lesions should have, in theory, made things better, at least for a little while. Only it brought no relief. My symptoms persisted. Quite severely, in fact. I was in so much pain that my doctor, who by this point, I suspect, was tired of hearing me complain and whine, put me on danazol, a steroid that launched my body into menopause. At the age of nineteen. I grew hair on my chin. I gained fifteen pounds. I had hot flashes. I had frightening mood swings. At nineteen. No nineteen year old is psychologically prepared for that kind of torture. Whether it was right or wrong, I took myself off of the medication one month earlier than I should have. I skipped my next follow-up with my doctor. And I started looking for a new one.
This, in fact, turned out to be the best decision that I ever made. Because sixteen years later, I am still with the same gynaecologist. Unlike every other doctor I have known, he takes me seriously. He cares about what is going on, both inside of my body and inside of my mind. He painstakingly explains every option to me, draws me pictures of my uterus so that he can explain to me what is going on, calls me "dear" as though I really matter to him, opens his office doors to me at 7:00 in the morning if I need to come and see him for an emergency, and most importantly, admits it when he doesn't have all the answers. He understands that he is fallible, and isn't ashamed to send me to experts more knowledgeable than him when the time comes. It hasn't been easy and it hasn't been without some degree of frustration, but he has been patient enough to try everything that he can think of to help me manage my endometriosis. And for the most part, he has been successful.
I say "for the most part" because endometriosis has no cure. And so it can, and does, rear its ugly head every now and again. There have been more nights when I have landed in the ER. There have been experiments with different medications. There has been an IUD. Some of these medications have caused other complications, like polycystic ovaries and ruptured ovarian cysts. There has been a second surgery, to remove both a ruptured cyst that was choking off my ovary and the endometrial lesions that returned. Always, the symptoms lessen for a time - sometimes years. And always they, along with the pain, come back again.
Which is why, four days ago, I found myself in the hospital, undergoing my third laparoscopy in 17 years. After ten years mostly at rest, the symptoms returned with a vengeance. Normal, I am told, for a woman my age. Also normal, I am told, for the condition to re-appear after so much time has lapsed since the last excision. And so both the surgeon and I expected that he would open me up for a routine laparoscopy, find the expected lesions on my ovaries and in my cul-de-sac, cauterize them with a laser, stitch me back up, and send me on my way.
Except this time, things turned out a little differently. The endometriosis they expected to find wasn't there (good news). A walnut-sized fibroid was there instead (bad news). This fibroid can be removed (good news). But not without taking my uterus with it (WTF???).
So they didn't take it out. Because they didn't have my consent to conduct a hysterectomy. Instead, they sewed me back up and sent me on my way.
And now I am left with this incredible feeling of "Now what?"
Seriously. Now what? I'm relieved that there was no endometriosis, but there is still pain. Is that pain caused by this fibroid? Will the pain remain if they can't remove the fibroid? But if the only way to remove the fibroid is to take out my uterus, do I really want them to go there? Or do I just suck it up and live with the pain? And what kind of option is that anyway? Why should I have to choose between shouldn't-have-to-live-this-way and not-ready-to-make-such-a-big-decision? And most of all, why can't I catch an 'effin break???
That's right. There's a little bit of self-pity. It isn't enough that I lived through nights in the ER, hospitalizations and seven doctors before someone took me seriously enough to check for endometriosis. It isn't enough that I went through steroid-induced menopause when I was far too young and ill-prepared. It isn't enough that in a decade and a half, I have swallowed a cocktail of hormones, that surgeries have been unsuccessful and have had to be repeated, and that I still deal with discomfort and pain on a monthly basis. Now I have a walnut-sized fibroid that is forcing me to decide whether or not to keep my uterus? Seriously, who the hell did I piss off?
Now those of you who know me might be saying to yourselves, "But wait a minute, Jay. You don't even want kids. So you don't need your uterus. Is this really such a big deal?" And the answer to that is "Yes. Yes it is a big deal."
I can't explain why. And I'm certainly not proud of this fact. But like it or not, a woman's identity is wrapped up in layers upon layers of sexual and reproductive identity. This is why I was so desperate in my earlier years to be diagnosed. The image of Rhonda, who lost her uterus at age 25, shook me to the core. I didn't want to, as I saw it then, stop being a woman. Even now that I know I don't want kids, I still take great comfort in the thought that this is a conscious choice that I made, not an option that was removed from me because of lesions and cysts and fibroids.
I have spent the better part of my adult life trying to separate my self-identity and self-worth from my reproductive system. I have tried to equate being a woman with being a sister, a daughter, a wife, an aunt, and a friend, instead of with having a fully functioning uterus. Being in a loving relationship and realizing that I don't actually want children really helped. Or so I thought. Until faced with this latest choice to make. And now I don't quite know what to do.
Which brings us back to Endometriosis Awareness Month. Social media didn't exist seventeen years ago when I was diagnosed. But now, virtual communities of women who survive this condition have popped up all over the place. They write blogs. They run forums. They tout slogans like "Fight like a girl" or "I have endo, endo doesn't have me." These networks allow us to talk to one another, to ask questions, to seek advice, to inspire, to cry with one another, to offer support, and most importantly, to offer hope, the kind of hope that can only come from knowing that you are not alone.
In a few days, I'll be back at work. In another couple of weeks, I'll hopefully be back to running and going to the gym and even (sigh) yoga. In four weeks, when things will have mostly returned to normal, I'll sit down with my surgeon to discuss next steps. I don't know what I am going to do, or what I will decide. But I do know this. Those slogans are right. I am not defined by my messed up uterus, whether it is inside of me or not. But I am defined by the journey that it has taken me on. I am a stronger, better, more self-assured woman because of what I have learned about myself along the way. And so there really is only one thing to do... In fact, it's what I have always done this whole time...
Keep on fighting. Like a girl. Because I will always be a girl, no matter what happens next.