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The Difficult Choices I Face With Severe Endometriosis

How would you feel if a doctor told you your illness is severe enough to be considered life-threatening but you still aren’t sick enough for them to really help you?

I struggle with this every single day. It eats away at me. I’ve been sick since I was 12 years old with endometriosis. I’ve been on my cycle for going on nearly two years now. I’ve been in severe debilitating pain almost every single day since I became sick at a young age. I don’t even remember what it’s like to live a day with absolutely no pain. To be able to breathe in fully with no restrictions.

I’ve been on different forms of birth control, I’ve been on steroids, I’ve been given a laparoscopy, a DNC and eight broncs on my lungs. I’ve been put through medically induced menopause at around age 14. I’ve gained uncontrollable weight from different hormones and steroids, I’ve watched my hair turn dark and fall out. I’ve watched my body slowly being taken over by this illness that is hardly known to people.

I’ve been to pretty much every doctor known and I’ve been to so many hospitals that my medical debt is untamable. It all ends the same. Every doctor and hospital visit ends with the same conclusion – I’m sick, but not sick enough that they can help me.

I’m severely anemic but not anemic enough. I’m coughing up blood clots from my lungs but my lungs haven’t given up on me yet so I’m OK. My endometriosis is so severe they would recommend a hysterectomy but I’m too young so they won’t do it.

Instead, they again want to give me a form of birth control that basically shuts off your ovaries, stops your period and puts you through menopause. They tell me this is my best option. They tell me my form of endometriosis is life-threatening and this is the best option for me.

I’m only 22 years old. I should be enjoying my life, going out and having fun. Graduating from college. My entire “adult” life should be starting right now. It shouldn’t feel like it’s ending. I shouldn’t have to wake up every day in pain, bleeding. I shouldn’t have to cancel plans almost every day because simply walking seems like an unbearable task.

So tell me, what would you do? Would you give in and try a drug for the second time in hopes it won’t make you as miserable as it did the first time? Would you take that chance? Or would you fight for a better option?

Seems like a pretty crystal clear option, right? Keep fighting since it is your life, your body, your choice. But is it really? Could you handle the late night hospital trips because you can’t breathe or your cramps are so severe you can’t stop crying and throwing up? The constant comments from people saying, “Oh you just have bad period cramps, get over it.” Could you handle it? Could you handle a pain so debilitating that pain pills, heating pads, ice packs and TENS units can’t touch it? Could you handle living with an illness that does not normally kill you but can make you wish you were dead?

Keep in mind, one in 10 women have endometriosis. Someone you know might be struggling in silence. Someone you know might be seeking help but is being turned away because so many aren’t aware of what endometriosis is really capable of doing. Do your research, get involved. Help us who struggle get access to more treatment options. We shouldn’t be turned away, we shouldn’t be treated like less than human.

It’s not just period cramps. We aren’t faking it. We are warriors. We are survivors. We rise up every day.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Thinkstock photo via Comstock.

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