#IAmSubject Project

I am participating in Diane DeBella’s #iamsubject project http://www.iamsubject.com/the-iamsubject-project/  Here is my #iamsubject story.

Surgery. A word that summons images of clean whiteness, sterile air, and rubbing alcohol. The smell of rubbing alcohol strikes more fear into my heart than a thought of a needle piercing my skin. Last year was my year for needles, so I’m not fazed much by them anymore.

I learned a lot about my body last year. I learned to listen, and demand that I be taken seriously for my pain.

My cramps had become steadily worse—and then stopped altogether. Then after a month or so, they’d start up again, worse than before, with a lot of heavy bleeding. I wasn’t on any form of birth control and I knew—I knew—something wasn’t right, and I was scared enough to go to the emergency room.

This is where my story picks up with a lot of other women: the dread of male doctors, mansplaining to me what I already know—it’s cramps!--and a condescending pat on the head with a: “There, there, it’s just your period, take two Advil and go home.” He actually shook his head at me, sighed, and prescribed some birth control pills, and no pain reliever. He actually made it seem like I was putting him out, and that I was overreacting. I felt stupid and like I was wasting everyone’s time.

Pain is warning that something isn’t right. Your body knows it and you know it.

You’d think people trained in both logic and medicine would come to the conclusion that if all it took were two Advil, would I be here curled up in a fetal position, leaking blood into two pads in four hours?

A follow up with a (male) OB-GYN confirmed, indeed, something wasn’t right. The pain was persistent. Something was so off, as a matter of fact that a transvaginal ultrasound (really uncomfortable) followed by an (extremely painful) biopsy of my uterine lining were ordered. Both of which revealed that things were growing in my uterus that aren’t supposed to: cysts and adhesions. The nastiest ones were about the size of two tennis balls.

It wasn’t until the surgical laproscopy that I found out I had Stage Four Endometriosis, one of the worst cases the oncologist had ever seen. My two hour surgery turned into four hours where I had the lesions and cysts removed (“Think of these giant cysts as being two large balloons filled with thick chocolate syrup,” my oncologist said. “And it’s superglued to a piece of wood. My job is to remove those balloons without breaking anything.”) Imagine walking around with these two giant syrup filled balloons in your abdomen. Pain is a warning that something is wrong.

But I made it into recovery, and it took me almost 5 weeks to feel like myself again.

Now, less than a year later, the cysts and legions have returned, along with the pelvic pain. Also something different this time. This time they found a tumor in my uterus.

And like last time, they can’t tell what kind of tumor it is until they cut me open and take a look inside.

I have a decision to make.

On one hand, I can’t keep doing a 10,000 dollar surgery every year. I can’t afford it financially, emotionally, mentally, spiritually. I also can’t afford the strain on my marriage, and the toll being sick and hurt all the time takes. (Although my husband and I did learn what “in sickness and in health” really means—as he carefully and gently helped me shampoo my hair and wash my body, not to mention other bathroom functions. Find a guy who helps you wipe, and you know its true love. )

I have to be realistic. My uterus will grow nothing but adhesions, cysts and tumors. My ovaries will develop nothing but cysts that never burst. And the possibility of cancer scares me to death. I have to think of my own quality of life, as well as my husband’s quality of life.

On the other hand, what all this means is I’ll most likely have a hysterectomy. It’s hard even to write that down. It’s even harder to write down that I will never bear a child of my own. All the stuff I went through last summer was supposed to give me a chance at conceiving—and we tried, but as soon as I went off birth control, all the problems I had before came back. I could try to preserve my fertility this time around by going on a series of cycles involving hormone and fertility therapy, tracking ovulation, injections to the stomach, running to the bedroom when it was the right time. And I could do that if I had to.  Other women have.

But I can’t do it for a less than 1% chance of conceiving.

Heartbreak hurts way worse than getting cut open.

How elastic and fragile the body is, and how complicated. A paper cut can hurt like hell, but an incision is nothing, and heartbreak takes years and years to heal.

I’m terrified.

I don’t know what this will mean for me, I don’t know how my identity will change. I do know part of me is broken. Well, parts, if I’m going to be honest. My heart is broken that I will never have a child of my own. I’ll never go through the process of pregnancy, labor, birth and motherhood.

My heart breaks for every story of neglect and abuse I see on the news, thinking every single time—why does this person get to have a precious child, and I don’t? And people say (of course) “Why don’t you just adopt?” Anyone who has been through adoption knows it has its own heartbreaks. It’s a lengthy process with its own pitfalls and expenses. “Just adopt” isn’t as easy as it sounds. I’m definitely not ruling it out, but one thing at a time.

I have so many questions. What will it mean to have a hysterectomy? Losing part of you that makes you a woman? How will my life change? How will my womanhood change?

Will I ever experience maternal love?

Then there’s those evil little what-ifs: What if male doctors had taken me seriously about my pain, could we have caught the endometriosis sooner? My own personal experience was that of condescension and arrogance, which made me reluctant to seek help. What if I wasn’t afraid of being dismissed as just another girl on her period and so avoided getting diagnosed sooner? What if I had access to affordable health care before things had gotten this bad?

My story is still in progress, but if I could share any story with another woman about pain and health it’s this: don’t ignore it, and don’t let your doctor ignore it either. Killer cramps are not normal. It’s not a “part of life” or “part of being a woman.” It’s real, and it’s not in your head. If a doctor tells you that, get a second opinion, or a third.

Always, always trust that little voice that says something is wrong. Sometimes it’s really hard to hear it when our lives demand so much from us. Be active in loving and taking care of yourself. And don’t let anyone dismiss you. 

Word Count:  1230

Photo Credit: Free Digital Photos.net