One of my hardest days was sitting in an OB-GYN's office, the sixth doctor I had seen about my pain, unclothed from the waist down, clutching the paper sheet to my lap as fat tears of frustration and shame rolled down my cheeks.
"Some women just have bad periods," the doctor told me in a sharp, matter-of-fact tone as she tossed her gloves away and looked at me with the same expression I'd received from doctors for years, the one that clearly said they thought I was being dramatic. What was dramatic was having to go through dozens of transvaginal ultrasounds and pelvic exams only to come up- pardon the pun- empty handed. I'm no prude but usually when someone's that deep inside me, they at least buy me dinner first.
"You don't understand," I told her. "My periods are ruining my life."
You should know that I am the world's biggest fan of hyperbole, but there was never anything exaggerated about this statement. The twisting, knotting sensation would turn into sharp, knife like jabs. My back would ache incessantly and my thighs burned like I had run a marathon when all I had been able to do was lie in bed, feeling helpless and pathetic. Ovulation pain was unbearable. My uterus felt heavy like I was carrying a rock in my belly. I bled so much I would get faint. I felt out of control.
"Some women just have a lower pain tolerance than others." She handed me a tissue so I could wipe my nose, streaming from all my crying. "You just might be a delicate flower." She was the sixth doctor to dismiss my concerns, and would not be the last.
Endometriosis is an incredibly common and incredibly misunderstood disease. So misunderstood, in fact, that my previous insurance company denied every claim I submitted, saying the care I wanted wasn't "medically necessary", despite being unable to function. It's where tissue that's normally found inside the uterus grows outside the uterus in the pelvic cavity. It looks like tiny red freckles, and can grow on everything. Ovaries, uterus, bowel, bladder, intestines, even your kidneys and up to your diaphragm- it's all fair game. And every month during your period, the lesions bleed too, spreading the disease and creating scar tissue that acts like an Elmer's glue spider web, sticking organs to each other, or to the pelvic wall. The main symptoms are pain and infertility, although some women have severe disease and report little to no pain. For the women that do have pain, it is at the very least disruptive, and its worst, debilitating.
A whopping 1 out of 10 women have this disease. On average, a woman goes 7.5 years from the onset of symptoms to a diagnosis. Surgery is the only way to get a diagnosis, and it takes on average 5 different doctors before she gets the surgery. Does that make you a little angry?
It took me 12 years to get diagnosed. I saw many doctors, many urgent care visits for pain, and when it was at its worst, I would take 10mg of Vicodin and 500mg of a muscle relaxer, and still be in so much pain I had trouble catching my breath.
My name is Emily, I have endometriosis, and once I showed up at urgent care, explaining to the nurse that something was wrong, seriously wrong. My ovary was killing me, the pain was unimaginable, and I sobbed and asked for help with the nausea I felt. Without doing any examination, I was told I had a back strain. They would not give me anything for the pain and sent me home.
Are you angry now?
I started having my period at eleven years old, and I vividly remember standing in the teen fiction section of our local library when I felt a wholly unfamiliar pain settle low in my stomach. When I got home and found blood in my underwear, I was almost elated. I felt like I had made my biggest step yet in transitioning from being a girl to a woman. Two months later the pain was nastier, but 400mg of Ibuprofen helped.
By 12, I was having periods every two weeks. The pain had turned from just unpleasant to awful. It would leave me breathless and crying, curled up in bed while my insides felt like they were being contorted.
At 13, I began vomiting from the pain and missing school. I absolutely hated my gender. All of my excitement towards having "become a woman" two years prior was gone. I hated periods, my uterus, and everything about having to go through this ordeal sometimes more than once a month. I envied boys while I puked in front of all the girls in the locker room before P.E., and envied other girls who never ever missed school for something as minor as a menstrual cycle. I wished constantly that I had to deal with unwanted public erections instead of this menstrual nonsense.
By the time 15 rolled around, my body had not yet regulated my cycle the way I had been promised, nor had the pain done anything but worsen. The stabbing pain made me reconsider my disbelief in Voodoo dolls. My cramps would come in nauseating waves, blooming into a gnawing sensation that would leave me breathless. Once again, my mother and I explained to my primary physician the severity and frequency, and that I was missing days of school at a time. I was handed a packet of birth control pills and a referral to a hospital downtown. We made the appointment that afternoon and I started the pills that night, convinced that this unfortunate lady-time trouble would be nearing its end.
The pill made me gain a lot of weight and didn't do much to help the pain, and certainly didn't help my already poor self image. By the time my hospital appointment came around, I had put on 15 pounds. When you're barely five feet tall, there's no way in hell you don't show that kind of weight. I would gain 15 more in the next month. When I was describing my symptoms to the doctor, my mother asked her- "Does this sound like endometriosis to you?" She shook her head and assured us I was too young to have that disease, that it was something that affected older women. And no, she would not perform a laparoscopic surgery in order to rule that out, because it was too invasive.
I gave up trying to figure it out, and just accepted that I had bad periods. I went on with life, high school, and trying not to dread my time of the month. Unable to handle the weight gain, I stopped taking the birth control. I still hated being a girl, but I had a steady boyfriend who cared and made me feel pretty which helped mitigate some of that frustration. When I started having sex however, the dissonance I felt came back in full force. Penetrative sex was always uncomfortable, and bordered on painful. I had no idea what to make of this and so I blamed myself. The divide between me and my femininity grew from a crack to a canyon and I didn't see an end in sight.
One of the most frustrating things about this disease is the disbelief you face. Whether it's from health care professionals telling you condescendingly that "all women go through this", to bosses and coworkers outright accusing you of lying, to losing friends over the umpteenth cancelled plan because you don't feel well, it's enough to make you crazy. I had taken such high doses of NSAID medication for so long trying to find relief I had given myself an ulcer and could no longer take them. By 21 I was having pain every day. I had no idea why, no doctor could find anything wrong, and yet I was constantly hurting, with no validation. I developed awful IBS symptoms, had a difficult time eating without being nauseated, and dropped 25 pounds. That led to a colonoscopy for fear I had Crohn's. They found nothing and once again, I was invalidated.
I felt like a hypochondriac. At 23. I was missing an additional week of work every month because I couldn't function, and was leaving early constantly, unable to finish my shift, and yet nobody could find a reason why. I hated myself, I hated my body, and I hated having to constantly defend myself to people around me who called me a liar. I finally got my diagnostic surgery in April of 2015, at the age of 24, 12 years after the onset of my symptoms. I awoke in recovery to find out I had stage three endometriosis. The surgeon told me they removed an endometrioma (a specific kind of ovarian cyst related to endometriosis) and cauterized some of the disease they found, but could not get everything. My disease progressed and six months later I was unable to work full time.
I was told I would need a full hysterectomy at age 24 in order to be free of my symptoms. Having never wanted children and desperate to be pain free, I agreed, only to be told I was too young for a hysterectomy and that no doctor would do it. I was being damned to a sub par quality of life by people who didn't think it was all that bad and who insisted I would want children more than I wanted to live a pain free life. I was told I could try Lupron, which would put me into an artificial menopause, or that I could have surgeries every few years to "clean out my pelvis". I was refused further pain meds. Heartbroken, I joined my local support group, and learned more about this disease than any doctor I had seen so far had told me.
Laser ablation is, as it turns out, highly ineffective in treating the lesions, leading to a very high recurrence rate. Lupron, a medication that was recommended to me countless times, is not a cure and has potentially permanent and upsetting side effects. The biggest reason we need greater awareness towards this devastating disease is that even a full hysterectomy is not a cure. And yet, there are plenty of women who have wanted children and have gone this route because their doctor told them otherwise, only to have symptoms return.
Excising, or cutting out the endo has become the gold standard of treatment. Laser ablation only cauterizes the surface of the lesion, while cutting it out removes all of the diseased tissue. Pioneered by Dr. Redwine, he dedicated his practice to helping women who suffered, and fought to change how the medical community treated this disease. He understood it for the harmful, progressive beast it was instead of the harmless nuisance a large portion of practitioners perceived it to be.
Presently, effective treatment is still hard to find, with only a handful of endometriosis specialists nationwide and persistent misconceptions running rampant in many doctor's offices. For women who live in a state without a specialist, the cost and time involved in traveling for surgery is sometimes prohibitive, leaving these women to fall into the trap of ineffective treatments which do nothing but allow the disease to progress and her quality of life to decline.
I was fortunate to have a loving family and husband who were in the financial position to get me down to a specialist in California, where he was able to save my reproductive organs. What he did find in surgery was shocking; my ovaries were stuck to my pelvic wall, my colon had adhered to my cervix, and endometriosis covered everything it could, including my rectum, blood vessels, nerves, intestines, and bladder. I was diagnosed with stage four endometriosis, as well as adenomyosis, which is when endometriosis grows into the uterine muscle.
It cost me so much of my life. While it was doing damage to my insides, it was doing damage to my relationships with friends and love interests. It cost me weeks of school, missed trips, and thousands of dollars in surgical fees, missed work, and medication. I didn't have to worry about wanting children and losing my fertility. I didn't have years of surgeries that did nothing but allow it to progress. I am fortunate in this regard and it still felt like I went to hell and back. It absolutely doesn't have to be that way.
We need more doctors in our corner, and excision specialists in more states so women can get the help they need without having to hop a plane just to see someone who believes them. We also need to stop normalizing killer cramps. There is nothing normal about pain that cannot be controlled with over the counter medications. Don't be afraid to advocate for yourself and see different doctors if you feel your concerns aren't being addressed properly. Irregular cycles, super heavy bleeding, painful sex, and terrible cramps are just a few of the symptoms to watch for. You know yourself better than anyone. This disease is so much more than just "bad periods".
As I write this, I am five weeks out from my excision surgery, and at 25 years old, have never felt better. It isn't the end of the road with my fight, and I have a lot of healing to do in regards to repairing my relationship with my gender, but for the first time in many years I have hope, and you can bet I'm going to fight like a girl.
For more information, visit Endopaedia
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