Let’s Be Honest — Endometriosis Awareness Month
I’ve been staring at a blank screen for hours now. Usually, that means I’m stuck on some plot point, or grappling with a direction a character is trying to take me. But not this time. Instead, I’ve been hesitant to write this post, because I can’t really do it without a lot of hard uncomfortable truths. And that’s exactly why I need to write this post. Those truths, however uncomfortable, are truth, and they need to be spoken. One of the things I’ve wrestled with is how to make this post in a way that won’t make anyone else uncomfortable, or offend them, or gross them out. You see, this post is about girl stuff. You know what I mean, those topics us girls only whisper about, and the men in our lives flee like a cat sensing an impending rainstorm at the first hint of the conversation. So men and cats, here’s your warning. You can get out now, but maybe you should stick around. Because while what I’m about to talk about isn’t pleasant, and at times might be a little gross or might make you uncomfortable, this just can’t be a private conversation any longer. It’s time our struggles become a little less private so that maybe the next generation of girls will understand, and so will their daddies, and their brothers, and their husbands.
I know exactly when the lying started.
I was a teen, probably about fourteen, in my family doctor’s office. After a lot of blushing and mumbling, I admitted why I was there. My periods felt like they were gushing. I had huge clots, and they hurt. My kind, caring doctor patted my knee and comforted me that it was totally normal, and nothing to be concerned with. Just part of growing up. Take some motrin. So I did, even though I sort of felt like I was failing at this becoming a woman thing. I’d seen my mom have rough periods, I was having rough periods, so I figured maybe he was right. It was just normal. So what if the motrin didn’t help. I saw my friends, later my roommate in college take it faithfully every month. I figured we all took it to give ourselves some feeling of control, like we were doing something about the pain, even if it didn’t really work. A few years later, I started the shot for birth control, and I remember feeling giddy when the nurse told me my periods would probably stop, or become lighter and less often. It sounded too good to be true, and it turned out for me it was. My monthly visitor continued to come every month, often early and staying for far too long. My symptoms from my period were severe enough that my riding instructor could tell when it was that time of the month because my performance visibly suffered. I was nauseous , off balance, and in constant dizzying pain that I’d accepted as normal.
I married far too young at 19, and suffered a miscarriage less than three months later. I had my first child at 20 and was divorced at 21. My pregnancy, which I thought would be delightful, finally a break from my awful periods, was downright awful. I bled, I cramped, I vomited. It was sort of like a 9 month long period, where I spent 6 months of it on bedrest and many nights of it in the emergency room struggling with pre-term labor and excruciating pain.
After having my daughter, my periods were rarely regular again. She was three months old the first time I woke up in the middle of the night unable to breathe, feeling excruciating pain along my upper spine, near my lungs. By morning after laying on a heating pad all night–pain meds didn’t touch the pain–the pain was gone and my period had arrived. By then, I’d started to question the normalcy of my body, and I was fairly sure something was wrong with me. I just wasn’t entirely sure I wanted to know the answer of what exactly the wrong was. I wanted more children, and after the terror of my previous pregnancy and miscarriage, I wasn’t sure I’d be able to have them. I’d reunited with my childhood sweetheart, who also wanted to have kids, and so we decided to try. My pre-period spinal pain continued every month until I conceived my son. Countless visits to doctors and emergency rooms found nothing. Then, pregnant with my son, the preterm labor battle began all over again. After having my son, my post-partum bleeding refused to stop, until finally after four months of it I cried in my OBs office because I was just so exhausted from what felt like a period that wouldn’t end. She put me on a birth control pill, which finally stopped the bleeding, at least for a few weeks although my monthly battle only grew increasingly worse.
Despite having a tubal ligation with my second c-section, I became shockingly pregnant when my son was a little over a year old. Once I got over the surprise, I was thrilled. Given the surprise, and my history, we kept it secret from our families, planning to tell them in the second trimester. I miscarried early, and was told it was likely a blessing, and that more than likely the pregnancy was ectopic. I was heartbroken, now realizing I wanted another child that I probably wouldn’t have. I began skipping periods. Missing two or three months at a time. And while that sounds like a blessing, it wasn’t. I’d suffer severe nausea, cramping and pain for months on end until finally my period would show. To make it worse, by then my husband was in the military, and our on-base doctors had no answers. They even told me it was all psychological, that my wanting another baby was causing the missed periods and symptoms. They offered birth control to try to regulate my cycle, and I refused, unable to give up hope, even while I suffered. And I did hope, knowing that if a miracle could happen once, it could happen again.
For a long while, my husband and I planned to have my tubes reconstructed to give ourselves a better chance. Then, my husband finally broke down and told me he couldn’t do it, that watching me be in so much pain, and suffering so much during my previous pregnancies was hell on him too, and the thought of another miscarriage was more than he could take. He was worried about both my physical and mental health, and he was right. Every month, my body declared war on me, and it was winning. The pre-period back/lung pain was back, sex had become painful, and it was a constant strain. Although he was always supportive, my husband and I were both frustrated. How was it that women everywhere dealt with their periods without much complaint every month, and yet mine reduced me to a helpless crying mess who just wanted to curl up in bed and die?
In April of 2011, my husband ended his time in the military. Just before we we’re scheduled to move home, I got my miracle and became pregnant again. Once again, we kept it to ourselves, knowing the risks. Despite our hopes, our fears came true, and while driving cross-country to return to the east coast we had to stop in St Loius for me to rest for several days after a miscarriage. The doctors at the emergency room were wonderful, and told me I’d likely also had a cyst burst on my ovary, but I was devastated. A trip that had started out full of hope ended up being a few of the worst days of my life.
While mentally I recovered, physically I never did. My periods began to last longer and longer, becoming even more erratic. My husband urged me to see a doctor, but by then I’d given up on finding answers. I didn’t want to be told yet again that it was in my head. In April of 2013 I finally went to my doctor after missing two periods. I was cramping, and nauseous, but too afraid to take a pregnancy test, unable to bear the thought of another miscarriage. I’d given up all hopes of a third child, and only wanted the pain to stop. Fortunately, I wasn’t pregnant, but I was still miserable and in pain and constant discomfort. Again, my doctor offered birth control pills, along with a full hormone workup. She wanted me to get the bloodwork done before starting the pills and my period made its reappearance, so she instructed me not to take them after all. My bloodwork came back normal, which felt like a slap in the face. Still, she insisted it was likely a hormone imbalance that had worked itself out.
Except it hadn’t, and it wasn’t. Over the next several months my period was even more erratic, coming and going every few weeks. By Labor Day, I’d begun a period that wouldn’t end. In October, after having my period for four months straight, I found a new doctor, finally ready to fight for answers. My life had deteriorated to constant, excruciating pain. The pain lives permanently in my lower back and pelvic area. I’m nauseous and dizzy more often than not. I’ve had clots the size of my fist, though most are the size of a quarter. I’ve learned to keep a change of pants waiting for me on the back of the toilet, because I never know when I’m going to bleed through the ones I’m wearing. And I am constantly exhausted, to the point of barely functioning. Over the course of several more months my doctor tried several different birth control pills in an effort to control my bleeding. Nothing worked. The best we achieved was reducing me to constant spotting, but if I did any activity at all, even just going to the grocery store, I’d bleed for a few hours afterwards. After doing multiple ultrasounds, bloodwork, and a biosposy–all of which left me in bed for at least two days in unbearable pain just from the exams, she recommended an ablation to stop my bleeding, but she needed my biopsy results to come back before she could do it. I begged her for some pain medication that was stronger than over the counter medications, and she said in a manner that felt like an afterthought that maybe I had endometriosis, if my pain was still so strong even though I was no spotting not bleeding fully. She suggested maybe instead of an ablation, I should try Lupron Depot. I came home from the appointment and began trying to learn about endometriosis, and my options. I was very skeptical about Lupron, because the reported side effects are downright scary. Not to mention I was concerned that it seemed like my doctor was only guessing, using a spaghetti approach to treatment, throwing medications at a wall hoping something would stick. Unsure that I was receiving adequate care, I found an endometriosis specialist in my area. I was shocked when I checked off almost every box on his checklist. I cringed so badly during my pelvic exam with my new doctor and burst into tears, that he was almost positive that my previous doctor had been correct. I did indeed have endometriosis, but he wanted to do a laparascopy to be sure, and to remove what he could. I hate that this doctor was able to recognize in less than 15 minutes something that my previous gynecologist took four months to recognize.
Last week, during my surgery, my new doctor found not only endometriosis, but adenomyosis. I keep thinking that I should be upset, having to make hard choices about the type of treatment I want to pursue for what is essentially an incurable disease. But I’m not. Because after over 15 years of feeling like my body is declaring war of me each month, I feel like I’m ready to declare war back. I have a name, a diagnosis for the constant pain. It is not all in my head. And more importantly, my doctor is committed to helping me find relief, which is something I desperately need.
The pain has grown so out of control over the last 6 months, that there have been more days that I haven’t worked than days that I have. I find it impossible to write while on painkillers, because instead of my head being filled with crazy characters and their words, my mind is just a fog of gibberish. But there is light at the end of the tunnel both for me, and my family, and for the books you all are waiting for because after so many years of no answers, I’m now on a quest to be pain free. But I am also angry. Over the years there have been many opportunities for doctors to accurately investigate my pain and symptoms, and many didn’t. But the mistakes weren’t just theirs, they were mine. I wasn’t dedicated to pushing for answers, because I was afraid. I accepted painful, debilitating symptoms as normal, and I shouldn’t have. If you take one thing from this post, I hope that it is encouragement to be your own advocate. You are worth the fight.
March is Endometriosis awareness month, and I think awareness about this condition truly needs to be spread, so that doctors and parents and young girls will reach a point where they never again accept disruptively painful periods as normal. I think one of the challenges of recognizing the disease for what it is stems from how different each patient’s experience is. Some women only have pain with their periods, other have it all month. The pain can be in many areas, and can mimic other conditions. Appallingly, many sources confirm what I already know, because I’ve lived it: it takes years, some suggesting as much as 6-10 years on average, for most women with endometriosis to finally find the right diagnosis. And that’s just unacceptable.
While the medical community needs to become more adept at recognizing it, as women, we have to be willing to talk about it. I didn’t know until after I was diagnosed that I’m the 5th woman in my family to be diagnosed with the condition. Female oriented symptoms and diseases need to stop being a taboo topic. Mothers, daughters, we need to share, to educate, and to advocate. My own daughter will be entering puberty within a few years (God help us all) and you can believe that I will be watching her journey with keen eyes, ready to advocate if necessary. Never will I let her believe pain is normal, because I now know the truth. But only when we all know better, will the status quo change.
For the month of March, in observance of Endometriosis awareness month, I will donate every cent of profits from the sale of No One’s Angel to the Endometriosis Research Center, a non profit organization dedicated to awareness and eduction about endometriosis, as well as the support of those suffering. This includes proceeds from the ebook, paperback and audiobook editions worldwide.