Endometriosis, It’s Not In Her Head: A Personal Story

A woman who has been given a diagnosis of endometriosis finally realizes that none of this was her fault; though she'll live with the damage the rest of her life.

endometriosis

For some women, their first monthly ‘visitor’ was something to dread—a shock, some confusion, a fearful betrayal by their body. For me, the youngest of all of my friends and the last to get that visitor, it was something I looked forward to with eagerness and expectation. I would be a woman. I would join my friends, my mother, and all the other women I knew on a journey that seemed somewhat mysterious and almost divine. To me, being a woman meant two things—I was no longer a child and, one day, I would be able to carry a child of my own.

My wait ended when I was eleven. It hurt, but I was ecstatic. I decided it would also be the day I first shaved my legs. My father found me in the bathroom, blood dripping down my shin—a result of my below par shaving skills. I looked up at him, a huge grin on my face, and said, ‘That’s not the only bleeding I’ve been doing today!’

While he got me a Band-Aid, I told him we should order pizza for dinner to celebrate. To his credit, he did … though I don’t think he told my three older brothers the cause for this mid-week treat.

Over the following months my visitor came sporadically. I was told this was normal—my body needing time to adjust. I was also told the extreme pain that accompanied it was normal. But as friends jokingly complain about cramps as if they were badges of honour—with smiles on their faces, a few melodramatic moans, perhaps—I couldn’t help but think that the pain I experienced was nothing to joke about.

My excitement about womanhood quickly waned. This didn’t feel like a gift, something to be thankful for, it felt like a curse—one I felt the need to hide. One morning, at age fourteen, there was no hiding. I woke up terrified. My body felt as if it was being torn apart. Sweat covered me. I tried to get out of bed and collapsed to the floor. My mother found me, writhing and crying, and told me I needed to stop, that this was part of being a woman and I just had to learn to deal with it. It was a crushing, confusing moment. (I only recently learned she’d lived a life with the same type of pain, and like me, had been told it was part of being a woman—something all women went through. She was only telling me what she thought to be true.)

Not wanting to be weak, I tried to deal with it. I really tried. I became incredibly skilled at putting a smile on my face, going about my day in immense pain (often while popping more ibuprofen than advisable) and coming home, exhausted from the façade. Through it all, I felt broken. I felt not strong enough for the ‘task’ of being a woman. I lived years feeling certain something was horribly wrong inside of me, yet any time I brought it up to a doctor I was told, yet again, that ‘this was just part of being a woman, and maybe the pain wasn’t that bad. Maybe it was mostly in my head.’

The most support I ever received was one doctor telling me, if Advil doesn’t work try Midol or Aleve. One of those should. They didn’t. They helped a bit though, so I kept popping pills and didn’t even think to ask for anything stronger. Clearly, I was just weak. Believing this, I was also ashamed.

Thankfully, at this point in my life, the pain rarely lasted more than a week per cycle. Still, confusion, isolation, fear—these were the emotions that often surrounded thoughts of my identity as a woman.

During my late teens and into my early 20s, the pain became consistently worse and lasted longer. Over the course of a few years I came close to fainting dozens of times (more a swoon— and no, it is not as romantic as classic literature implies it to be. It’s simply scary and embarrassing). I full out lost consciousness five times. Four of those times were from the pain of debilitating menstrual cramps, the other was from a sprain so bad I couldn’t walk on my ankle for over a month.

Obviously, the doctors I saw were concerned. They sent me for CAT scans, MRIs, and multiple blood tests and cardiograms. I saw two different neurologists. My license was taken away while they tried to find answers … answers to the reason I was passing out, not answers to the pain that was leading to it. Not one doctor questioned the fact that my period pain, pain that was supposed to be entirely normal, was causing me to faint. I didn’t question it either—I should have, the women around me weren’t collapsing every few months. But when you’re told something long enough, you tend to believe it.

In my mid 20s I went on birth control to help regulate my incredibly irregular cycles (that, my doctors did see as a problem—it could last anywhere from two weeks to three and a half months, and birth control was presented as the solution). For a while, I was able to forget about the problems that had plagued me for years. I’d get a few cramps, some discomfort, but beyond that—not such a big deal. No more weeks of cramping, followed by several days of debilitating pain. I almost forgot I’d ever had “period problems”.

But my body didn’t like those hormones. They messed with my mood, my thoughts—I found myself changing into a person I didn’t recognize, so I said goodbye to hormones and tried the copper IUD.

Here’s where things get really ugly. Weeks of intermittent pain that would stretch anywhere from 3 minutes to 5 hours before a blessed reprieve. (The reprieve still painful, but manageable.) For about four months I didn’t know what it was to have a day completely free from pain. I had to readjust my pain scale. If the worst pain I’d experienced in the past was a 10, I could now only call it about a 7. Level ten, when it hit, made me wish for death. Several trips to the ER resulted in nothing but looks that made me feel as if I were an exaggerating attention seeker.

The first doctor I saw after the IUD insertion insisted the first few weeks could be difficult. When I went back to her a second time, that day my pain about a three, I insisted something was wrong. She insisted I was being overly concerned because I had always held fear that something was wrong with my reproductive organs. She told me to wait a few months for my body to become used to the IUD.

Belittled and filled with more shame—wondering if I really was the drama queen she seemed to make me out to be—I listened. Though I didn’t think it could be true … if I were a drama queen wouldn’t everyone know about my suffering? They didn’t. I kept it carefully hidden, my fiancé the only one aware of the true extent of what I went through day to day. While discussing some of the pain I went through with a friend who had chronic pain, he suggested I was maybe hiding too much. I never cried in the doctor’s offices. I never moaned. I spoke calmly, whether it was a day my pain was tearing me apart at an 8 or 9 or merely a constant annoyance at a 3 or 4. (At ten there was no way I’d make an appointment). Apparently, sometimes people need to see it to believe it.

Thankfully, I ran my own business and only had to work outside the home several days a month. If that day landed on a ‘bad’ one I would take 4-5 extra strength ibuprofen in the course of as many hours, and with the pain dimmed but never gone, I’d put a smile on my face and get to work.

The suggested few months passed with the near constant pain unchanged. Back at the clinic, I was assigned a new doctor. This doctor listened to me. She asked about the pain I’d experienced not just through the past few months, but since I was a girl. She scheduled an ultrasound for the next day. She also brought up a word I didn’t recall hearing before—endometriosis—asked if I’d like to see a gynaecologist, and suggested I find out if my mother or any other women in my family had the disease.

It turned out the IUD was dislodged, and probably had been since the first week or two after insertion (over four months earlier). Hours after the ultrasound, I received a call from the hospital urging me to come in and have it removed because ‘it must be causing horrible pain’.

It also turned out that my mother had endometriosis too. Over the course of 15 years she had three C-Sections, one D & C after her second confirmed miscarriage, and three surgeries—one to remove ‘chocolate cysts’ as well as an ovary and fallopian tube, one for observation, and one for an abdominal hysterectomy shortly after my birth.

She was told the reason for the hysterectomy was that she had a disease, endometriosis. Yet no one told her this disease was the explanation for her years of debilitating pain—not the mere fact that she was a woman. And no one told her it was hereditary.

With this information, the gynaecologist I saw agreed endometriosis was likely where much of my pain stemmed from and suggested inflammation from the disease could have contributed to the IUD dislodging or, more likely, the dislodged IUD prompted additional endometriosis inflammation that exacerbated symptoms of the disease and could have contributed to my abnormally bad pain. A vicious cycle. She discouraged me from getting surgery to diagnose the disease until I had tried to conceive for a year with no success. My fiancé and I weren’t ready for that yet, so she encouraged me to have a new IUD inserted and told me I should expect the pain to decrease slowly.

When my now husband and I decided to try for a baby about six months later, the intensity of my pain hadn’t changed, merely the length of it. Instead of constant pain at varying levels throughout my cycle, I was granted a week or two pain free before it would creep on back, getting steadily worse until it reached its peak a few days before my period. The removal of the second IUD seemed to make no difference. My pain continued—reminiscent of the pain in my early 20s—only worse, far worse.

After a year and a half of failure to conceive, and several more trips to doctors because of terrifying pain that now also held the fear of ectopic pregnancy, I was admitted to a fertility clinic and sent for testing. The first, a dye test, revealed my ovaries were not at all where they should be. The doctor didn’t tell me they’d been pushed out of position by cysts, but it was the only explanation I could think of. I hoped I was wrong.

I wasn’t. A month before my thirtieth birthday I was sent for an ultrasound that revealed my ovaries, which are supposed to be about the size of an almond, had been stretched to the size of peaches. My first instance of period pain that seemed abnormal occurred when I was eleven and became progressively worse through the years. Seventeen years to be exact, before anyone even suggested a legitimate reason for this level of pain. Because of the size of the cysts, my doctors were able to tell me I had endometriosis, a diagnosis that is generally only possible through surgery.

I did some research. This was a disease known to cause debilitating cramps, along with a host of other symptoms I’d been experiencing. My ‘technical’ diagnosis didn’t happen until several months later, after a tissue sample was taken during surgery. Nineteen years I waited for an answer. Nineteen years because my pain was a ‘woman’s problem’, because I was led to believe I was weak, because I was shamed into keeping silent.

It’s true, endometriosis is a disease that’s very hard to diagnose, and doctors can’t be expected to know everything. As a result of the shame I experienced, I know I didn’t push for an answer as hard as I should have, but I did push. It wasn’t until I saw that clinic doctor at age twenty-eight that anyone took my complaints seriously enough to suggest an answer. And that’s tragic. Being a woman shouldn’t be inherently painful. And we shouldn’t be told that it is.

So, after almost two decades, I was given the name that explained my years of suffering … only that suffering wasn’t discussed. The issue at hand was my infertility. That’s where the focus lay, and in my ignorance, I thought that was okay.

There was no hope of removing the cysts as it would also remove my eggs—meaning no babies, ever—but decreasing their size was a possibility. I was heartbroken. I was scared. But, with encouragement from my husband, I decided to take a chance.

Surgery revealed an even nastier revelation. The inflammation, scarring, and subsequent adhesions had not only pushed my ovaries and fallopian tubes out of place, they had also adhered them to other organs. A routine surgery that generally takes forty-five minutes to an hour and fifteen took over three and a half—and that was with my doctor and me deciding beforehand to ignore the damage the disease had inflicted on my bowels and bladder and only focus on the damage directly related to my reproductive organs. Rather than coming out of the surgery hopeful, I came out fearful. If that’s what the disease had done to my reproductive organs, what had it done to the rest of me? If intensity of pain was an indication of damage, the worst of the disease was probably on my bowels.

Receiving my diagnosis had been a double-edged sword. Wonderful, because it meant I wasn’t just a weak woman. Horrible, because there’s no cure for this disease and all of those years of feeling broken were, in a sense, true. I wasn’t broken, but a part of my body certainly was, and not only would that mean years more of living with horrible pain, it would mean I may never get to be a mother—one of the most precious desires of my heart.

As a result of the extensive damage the disease had wreaked on my body, and the work my surgeon had to do to try to improve it, recovery, which often takes a couple of weeks, took a couple of months. Like the trooper I’d trained myself to be, I didn’t let that pain (or the pain that often accompanies me during ‘baby-making’) deter me.

Yet, cycle after cycle, I saw the crushing proof that my body, again, had failed me. It’s a hurt I imagine only women who’ve experienced infertility themselves can relate to: the way you spend weeks loving this possible little person, hoping for him or her, adjusting your life and your choices to provide the best environment imaginable, and then, with one trip to the bathroom, find yourself mourning the loss of a soul that may never have even existed. Feeling stupid for letting yourself get hopeful once again, while also realizing you have to hope, because if you didn’t, there’s no way you could put yourself through another month of abstaining from foods and activities you love, of the regimented, obligatory sex, and, for some of us, the horrible pain that often accompanies it.

My pain, though marginally better cycle by cycle, showed no great improvement post-surgery. My fertility, obviously, hadn’t improved. I felt alone. I felt frustrated. More than ever before, I felt like I was this disease, and I didn’t know what to do with that.

So, I started researching. I looked for hope and answers wherever I could find them. I saw an acupuncturist, who led me to a herbalist/naturopath. I spent hundreds, which quickly jumped to thousands, on their treatments and recommended supplements. I changed the way I ate, following the incredibly stringent diet the naturopath suggested, which left me eating little more than nuts, seeds, legumes, cooked vegetables, and minimal amounts of fruits. I changed the way I exercised, being cautious not to let my intensity level progress to anything that would cause laboured breath after possible ovulation. With cycles that sometimes lasted two and a half months, that meant weeks of nothing more than moderate walking—weeks of no Zumba, no interval training, running, or hiking, some of my favourite things. I started meditating, and practicing yoga, and EFT, and visualizing my body healing itself—becoming pregnant, giving birth to a healthy child and, one day, living without the pain that, at times, felt like my constant companion.

I now had a name for the ‘thing’ that was wrong with me, yet the more I sought answers, the more lost I felt. But I was trying, at least I was trying, trying so hard … of course, nobody’s perfect. And so my life became overrun by guilt. I’d be invited to a restaurant, and with no idea of what to eat, would perhaps settle on a salad—but uncooked vegetables was a no-no. Guilt. I’d be too tired or frustrated to meditate, and then lay in bed, feeling selfish of my lack of commitment. Shame. My husband and I would decide to go on an easy hike, and forget about the hill half way through … and depending on the ‘time of the month’ I’d wonder if that extra exertion had been enough to kill a life struggling to take root inside of me. Fear.

I was wrecked. Emotionally, physically, mentally. Tears would spring to my eyes at the slightest provocation, sometimes seven to eight times a day. A commercial, a glint of sunlight, a feeling I couldn’t label that stemmed somewhere deep in my chest, could set me off without warning.

Obsessed. Broken. Powerless. Broken. Weak. Broken. These were the words that danced through my mind. I finally gave up on the acupuncturist and naturopath—the acupuncturist because of finances, though I felt very positive about our sessions. The naturopath, partly because of finances and partly because, though I believe she was genuinely trying to help me, she admitted, after several months of no improvement, my condition confused her and she felt somewhat at a loss about how to direct my treatment.

This freed up one level of pressure but introduced another—my ability to heal was ALL on me now. I read enough about endometriosis, infertility, the effects of stress, the effects of joy, to fill multiple books. Facts filtered through my mind like water through a sieve. And then an idea came to me, an idea that transformed my life.

I’m a novelist and was trying to decide what the storyline would be for the fourth book in a series I was working on. Desperate for freedom from the thoughts, fears, facts, and emotions swamping me, I decided to try to excise some of that pain and confusion by thrusting it onto one of my characters and letting her deal with it. Cruel to the unsuspecting character, I know, but authors are known for their cruelty!

It was the best thing I could have done. I quickly realized the story I wanted to tell (both of the effect of the disease on the character as a woman and on her fertility) was too big for one novel, so I broke it into two.

As the character, Tracey Sampson, learned she had endometriosis, struggled to make sense of what that meant for her life, her relationship, and her potential of ever being a mother, I was able to dig deeper into what that meant for me, while having the distance granted by a creator’s and then an editor’s eye.

Tracey’s story is in no way autobiographical, but just as my story—with all its pains and fears—may parallel any other woman out there with the disease (or any disease that is chronic or affects fertility), Tracey’s inner aches paralleled mine. As she worked through her insecurities and transformed herself into a woman she could be happy with, I found myself doing the same.

The progress was slow. When I released the first novel (the fourth in the series) I kept the character’s connection to my own life a secret from my readers. I couldn’t talk about it. It wasn’t until the final edits of the second novel that I realized a beautiful thing had happened. I was no longer a woman living in terror, a prisoner of her own body. I no longer believed my worth and my ability to live a happy and fulfilled life was connected to my ability to be a mother. I know longer felt this disease defined me.

When I started writing those books I was raw—I wouldn’t have shared any of this. Today, there are still hard days, but there’s also a hope and a confidence that I could not have claimed back then. There’s also conviction. The years I suffered, the years so many women suffer, being told we’re weak, our pain is in our head, or that our symptoms only matter in terms of our fertility, are years no woman should have to live through.

The only way that’s going to happen is if women like me, women who for too long kept silent, start talking. Endometriosis affects one in ten women. Think of it—if you go out to dinner with a group of your girlfriends, there’s a pretty good chance one of you has the disease, and there’s an even better chance that person doesn’t know it. She’s probably scared. She’s probably confused. She’s definitely frustrated. She could be you.

Writing those two novels allowed me to access my illness, and the consequences of it, with a distance that gave my mind and heart the freedom they needed to heal. My hope is they will do the same for women who read the story, or at least provide them comfort, help them to know they’re not alone.

Tracey’s story is about much more than this character’s disease, just like a woman’s life is about more than her pain, than her ability to bear a child. But there’s no denying that these aspects play a strong role. It takes strength to not let them play the dominating role.

To the women reading this: Remember, you matter. Your pain matters. And it’s not just about infertility. It’s about quality of life. It’s about better treatment. It’s about being heard and one day finding a cure.

For me,

I’m still a work in progress. I have good days and bad days—both mentally and physically. But I no longer feel so alone, so scared. And the best thing I can do, the best thing any of us can do, is to find a way to cultivate joy, and to not feel guilty when, at times, we give into sorrow. It’s all a part of life.

To learn more about the symptoms and diagnosis of endometriosis, please visit The Endometriosis Network of Canada.

 

Charlene Carr is the author of six Women’s Fiction novels. Books four and five of her A New Start series , Forever In My Heart and Whispers of Hope, follow the story of a woman living with endometriosis—the trials, the fears, the journey. Her books are available on all major ebook retailers and in print at Amazon, Chapters, and Barnes and Noble online. Visit charlenecarr.com for more info.

This is one of our readers’ personal story submissions. If you would like to read more, see our Personal Stories page. If you would like to share your story, please send us an email.

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