It begun with the worse cramps I experienced in my life. It was like somebody was jabbing a knife into my side over and over again. I was left on the floor feeling broken, left on the floor feeling like I'd been put through the wringer. Like I am cookie dough and somebody roller pinned my insides. I only wish it was that poetic.
Imagine being in so much pain you think to yourself “I'd rather die then experience that amount of pain again.” Well. That was me. The sad part is it didn't just happen once. It happened again and again.
But nothing was wrong. At least, according to the doctors I saw.
Now imagine having to fight for your life, because you know something is wrong. You know something isn't right. You wake up every morning feeling on the verge of throwing up, but each and every doctor you see tells you the same story. Nothing is wrong with you. Nothing is physically seen in scans, nothing is physically detected in blood tests, but most of all, with no proof that anything is wrong, they disregard your word, your thoughts, and send you home making you think it's all just anxiety. It's all just in your mind.
This is how I lived ten months of my life.
When I was twelve, I hadn't a clue what my adult life would hold for me. I got my period and it hurt badly enough that my mother used to let me stay home from school. She told me the pain was normal. I'm not so sure it was. Talking about blood is taboo, I'll spare you most of the details, just know that my periods were so heavy they would soak through my pads, soak onto my bed in the middle of the night, and once even soaked through my jeans all over my chair while I sat in class. As an adult, I once made a joke to my fiance pointing out the “three months supplies” caption on a box of kotex and laughed. I told him, “yeah, right, more like one month supplies.” They never lasted me that long at least.
All this, nobody, ever, pointed out as being abnormal.
It wasn't until my adult years when things took a final drastic turn. I had been having freak anemic episodes year after year; where I felt so weak I could faint.
This didn't ring alarm bells for anyone. Nobody cared about how I felt as my tests kept coming back as “normal.”
It wasn't until last year, in January, where things really started to hit the fan. I had two episodes of the “stomach flu” that came with the double whammy of a period. A period so painful I remember grabbing my stomach, kneeling on the floor and thinking to myself “I don't ever remember periods being this painful.” I didn't put two and two together until my body really started to do me in. After those two episodes of the “Stomach flu,” I developed a chronic condition where I was constantly in pain, every single day. It hurt to walk. I had a stabbing feeling in my gut. My stomach felt bloated. Every time I ate, I felt like I could puke. I went to my family doctor, and after having a pelvic exam, and explaining to her my symptoms (burning, pins and needle feeling) she told me I might have ovarian cysts.
Yes. Answers, I thought. Now here's where things became really painful. I took a bunch of tests (Ultra sound, Cat scan, even more blood tests.) All of them came back negative. I think this was the worst part in all of this. Each time I saw a doctor, each time I took a test and still didn't have answers, I felt defeated. I felt like I would NEVER EVER have answers. Do you know how it feels to have pain every single day of your life and just be told that you are “fine.” That you are imagining these symptoms? Because tons of females every year get told just that. My favorite doctor by far told me that I obviously had anxiety, and that all my symptoms stemmed from my anxiety. If I merely calmed down and relaxed, well, I would be living normally.
My second favorite doctor charged me 3,000 dollars out the butt just to tell me that all my pain stemmed from constipation. Because they took a cat scan, and all they saw were not cysts (which they believe I self diagnosed myself with) but constipation! The lemon to this story is that I used to drink coffee every single day. I used to have bowel movements every single day, but the moment when my periods became so painful I couldn't bear them, I did the hardest thing I ever did in my life, and quit coffee. Low and behold I developed constipation. But I know, for a fact, that not a single one of my symptoms were caused by constipation. Constipation was a symptom, not a cause.
However, not a single doctor would listen to me when they had my catscan of constipation in their hands. No OBGYN wanted to see me. Infact, I was mocked by the vast majority of OBGYNs when I brought up “could this be Endometriosis?” Endometriosis was a word I didn't even understand at the time, but after my mother described to a family friend about everything that had been going on, our family friend turned to her, looked her dead in the eye and told her “Tell them to check for Endometriosis.” Because, it turned out, this family friend had Endometriosis, and everything I was experiencing this family friend went through themselves.
I educated myself after that appointment. What exactly is Endometriosis? It means that the lining of your uterus grows outside your uterus. Put that way, it sounds simple and painless. But those lesions can grow everywhere—from your lungs, to your intestines, to even your bowel. Every month you get your period, these lesions bleed. Imagine all that blood with nowhere to go. It's painful. If your unlucky enough to get Endometriosis on your intestines it'll feel like your intestines are falling every time you use the loo. It will feel like your ovaries are tugged down over and over again. Heck, your whole stomach will feel like it's caving in, every, single, month.
Even being armed with answers, not a single doctor would listen to me. Even after researching my own symptoms, and matching them up with other people with Endometriosis, not a single doctor wanted to listen to me. Well, that's a lie. I should say not a single OBGYN wanted to listen to me. Because the sad reality of the matter is: Even though Endometriosis affects one out of ten women—the disease is still wildly unknown, even by the professionals in the field. My gynecologist tossed me to the wind, told me to see a GI specialist, because the pain I was experiencing was “too far up” to be OBGYN related.
I saw a GI specialist, took more extensive tests (Colonoscopy, even more blood tests, and even a stool sample.) Guess what? I was diagnosed with IBS, which is a blanket term that describes a condition, but not a cause. A blanket term merely stating that I have intestinal issues. This entire struggle was over seven months long. It started in January, and I was cleared in July (my birthday month) with my GI that there was absolutely nothing wrong with me GI wise. I grew adamant that my Gynecologists were going to hear me roar.
During this entire time I just felt like I was getting worse and worse. Imagine a pain so bad that after the episode, however brief it may be, you end up on the floor the rest of the day so sapped of energy, all you can do is just lay there, on the dirty mud stained carpet. Because that was me. Not every day of my life, but every day my period hit. And if it was one day, well, I think I could have stood it. But no, this happened again and again. This happened so often that every two weeks I scheduled a new appointment with a different gynecologist in hopes that they would here me out. It got to the point I was so sick of describing to everybody my symptoms, because I had said it all too often yet it still felt like I was talking to a wall.
Doctors are only human, I get that. They can make mistakes, they can misdiagnose, but what bothers me is how the vast majority of us that suffer with Endometriosis never get heard. That for some of us it takes years for us to finally find a doctor willing to do a laparoscopy on us, because an invasive procedure where they stick a camera down your bellybutton is the only way to be diagnosed.
I spent many days on the floor crying. I spent many days contemplating suicide, because I thought a life with this type of pain wasn't worth living at all. The most painful part is I would call my mom when I had these fits. I would tell her again and again these very words. Imagine your own daughter telling you she no longer wanted to live. That is probably the hardest thing for a mother to hear, but it was the truth, and I needed to tell someone, anyone, the truth. My mother has always been a firm support in my life. My mother was the one I confessed all these truths to. If there's one thing I can say about a chronic pain, is it makes you realize just who you have there for you. It makes you see the people who love you, the people who would do anything for you. The people who would sit through these episodes again and again with you. The people (because my dear mother was one) who would rush you to the ER in the middle of the night because the pain was so bad you really thought you were going to die.
Living with Endometriosis teaches you that even if you are pouring out blood, and in so much pain you feel you could die, you should just sit at home and wait it out. Because not a single doctor can, or will help you.
The day I was heard, was the most unbelievable day I experienced. Can you imagine booking Gynecologist after Gynecologist just to have people scoff at you? Just to have people tell you you have IBS, just to have people tell you “Oh, if it is endometriosis, then birth control will take away the pain” (this is not the truth, but many OBGYN's state this, because, sadly, they don't know better.)
Can you imagine an invisible disease you feel all the negative effects from, but not a single proof shows on your body? Can you imagine a disease that makes you feel like you're crazy? Because nobody sees anything wrong with you? But you feel it all?
The day I was heard was because I wanted to be heard. I booked another gynecologist, and after a bad episode of pain where I layed broken on the floor, I thought to myself enough is enough. This is the last time I will experience this.
The day before my appointment I wrote a six page essay about everyone of my symptoms, and my “journey” from doctor to doctor. How I felt every single day of my life. What helped, what didn't. I was vivid, expressible, and didn't spare a single poop episode, because, honestly, endometriosis has a lot to do with pooping episodes and feeling like your intestines have been punched out.
The day I was heard was because I wrote a six page essay. How sad is that? It took me ten months to finally be heard. I finally got the laparoscopy I wanted on 10/10. I was hoping that would be the end of my journey. But it was not. Most females take years to even be taken seriously, some can take as long as ten years to finally get a laparoscopy. Everyday I count my blessings, because yes, after my laparoscopy my pain is 1/10th of what it used to be.
But it is still there. Everyday.
I spend some nights staying up until 5am crying my eyes out because I have pain. I spend some days wondering if I can ever hold down a stable job like a normal person, because I am hit with bouts of pain, bouts of pain people will never understand. I work in retail, and once upon a time somebody came into the store while I was having such a bout. Because you don't show any outside proof of the pain, people honestly don't get it if you're not screaming in agony unable to move. I fought through the pain to help this guest, having to kneel at one point as I searched up an item for them because the pain was so bad it knocked me off my feet. This very same guest decided it was okay to tell my manager that I was a horrible employee that proceeded to sit on the floor and not help them as fast as I could have.
This episode will be etched into my mind, because afterwards my manager told me that next time I have such an episode to hide in the back and let it pass. I thought to myself, well if I did that, I would never be out on the floor to help our guests. I never got in trouble, because my managers know me. But I just wish the world had more of an understanding of Endometriosis overall.
There is no cure for Endometriosis. There are treatments to help with the pain, but nothing will ever cure it. I've been offered Lupron, a shot that can send me into temporary menopause, with the possibility of life long side effects (brittle bones. Being sick all the time.) This is also used as a cancer treatment. Endometriosis is not cancer. I refused this treatment and am currently trying to find a way to manage my life and pain.
Today I am writing to you because I want more awareness of this disease. I want people to not have to go through the struggle I did just to have somebody listen to them. I want a cure, however obscene that sounds. If this disease affects 1 in 10 women, then tell me, why isn't there a cure? Why does the only treatment seem to be something that can have lifelong side effects, that in all reality doesn't feel useful?
I am writing to you today just to let you know that I spend every day of my life trying to find the bright side in life, which is a struggle when I experience pain probably 80 percent of my day. I consider myself (and all the other people that struggle with endo.) the strongest people I know. Because to manage life when you're in so much pain, well, that's a miracle. But why, why do we have to be in pain? Why is this something that we must live with? Why is this something without a cure?
Why is it that I have these moments of doubt when I am in pain that I will never ever be able to live a normal life again? I constantly fear that I never will. I constantly fear that I won't be able to continue my retail job. I constantly fear that I won't be able to achieve my dreams. I constantly fear, but through all this fear I constantly dream.
I dream that there is an answer. I dream that nobody will have to go through the type of struggle I did. I dream that one day there will be a cure. But for now, I dream that the entire world may know about this disease, so that if there is some one somewhere out there struggling with the same things I did, that they know they are not alone. That they know we are all Endowarriors..