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I’m 31 and Considering a Hysterectomy

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We had been planning girl’s night for over a month. With her husband out of town, a friend had proposed a slumber party — we would get all the kids to bed and then stay up drinking wine, talking, laughing and watching as many chick flicks as our hearts desired.

Pretty much my idea of a perfect night.

Except that I had started my period earlier that day, and for the second month in a row, I was feeling incapacitated by the pain.

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“You guys won’t judge me?” I asked, “If I take a pain pill?”

The kids were now in bed, and with other adults around I felt like I could justify something to get me out of this agony. But I was nervous too, afraid that my friends may peg me as the pill popper I had always fought against becoming.

They looked at me with concerned eyes and said, “Of course not! But how long has this been going on? How long has it been bad again?”

I have Stage IV Endometriosis. For those of you who don’t know what that is, The Huffington Post featured an incredible piece on this disease a few weeks ago, explaining it as a social justice issue — a condition capable of binding organs together and causing knife-like pain. I was first diagnosed five years ago, after seven months of increasing pain levels finally led to a doctor suggesting exploratory surgery. That was the first of five surgeries I would endure over the next three years. The last three were considered fairly major procedures, lasting over five hours each.

I was placed on a drug that was a derivative of chemotherapy. My hair thinned out, I found myself repeatedly throwing up meals, and the fatigue I experienced was almost as incapacitating as the pain the drug was supposed to be fighting. This lasted for six months.

Eventually, it became clear I would never carry children as a result of this disease — two failed IVF cycles at the age of 27 leaving me broke and brokenhearted.

This wasn’t just about bad periods anymore. It was about a chronic, debilitating disease that had robbed me of my life.

Even worse, by that point the pain I was experiencing had become a daily struggle. We’re talking shooting nerve pains down my legs, an enduring ache in my hips and low back that made it difficult to walk, tears springing to my eyes every time I tried to pee, and so much inflammation and scarring around my digestive tract that eating had become a battle.

This wasn’t just about bad periods anymore. It was about a chronic, debilitating disease that had robbed me of my life.

I had been an active girl leading an exceedingly happy life prior to the onset of pain at 25. Now, at 28, I was routinely missing work and no longer had much of a social life at all – spending most of my time in bed on a heating pad, taking pain pills far more often than I cared to admit.

And then I found Dr. Cook, one of the leading endometriosis experts in the country. He said he could give me my life back, and he fulfilled that promise with a series of surgeries meant to eradicate my body of endometriosis. For two years, I lived pain free and healthy — finally feeling like a normal person again, like someone who wasn’t sick and constantly bogged down by pain.

Now though, I’m starting to experience that pain again. Not nearly as bad as it was before, and so far mostly just during my period and around ovulation, but it’s bad enough for me to be nervous.

Bad enough for me to be contemplating next steps.

There are no cures for endometriosis. And while Dr. Cook is doing amazing work, with success rates higher than any others I have ever seen, my case was always an aggressive one. We always knew it may come back at some point.

So for the first time, I’m thinking that when (and if) I should need to go under the knife again, I might be ready to let him just cut it all out.

A hysterectomy.

I’ve avoided this option from the start, even though it is one of the first possibilities many doctors will bring up as treatment for endometriosis. I did my own research though, learning that most experts no longer believed it to be an ideal treatment option. For one, those organs serve a greater purpose than just baby making, and ripping them out of a woman a decade (or more) before menopause would naturally occur can often lead to hormone regulation issues and even an increased risk for certain cancers.

Then there is the fact that a lot of women still go on to experience issues with endometriosis even after a hysterectomy. If any diseased tissue is left behind at all, that tissue still has the ability to bleed, scar and cause pain – which is why if I were to decide I was ready for a hysterectomy, Dr. Cook is the only person I would allow to perform it. Because should it come to that, I need to know I can trust the doctor performing my surgery to remove every last ounce of diseased tissue from my body.

Still, we’re not there yet. The goal for now is finding ways to prevent further spreading for as long as possible. We’re talking about trying a new, experimental drug called Low Dose Naltrexone that has been used with promising results for various autoimmune conditions, as well as continuing to monitor the situation and my pain levels on a month-by-month basis.

I have a toddler, a little girl brought to me nearly two years ago now through the miracle of adoption. My biggest concern with another big surgery at this point is her. I can’t be away from her for weeks at a time. I’m her sole parent, and while I have friends who would surely help – it would break my heart to be away from her that long. But a hysterectomy is also a major surgery with a long recovery time, so I couldn’t take care of her during that either.

I’m just thankful we’re not there yet. I’m thankful there should be time, hopefully years, before I have to make that choice.

It may not be cancer and it may not kill me, but it certainly tore my world apart.

Yet I can already feel the panicked dread rising up inside me as I imagine another several years ahead of me spent fighting against ever-increasing levels of pain. As I think about how many times already I have told people, “I’m fine,” because I fear that saying anything else is equivalent to saying, “I’m weak.”

In my experience, people don’t understand this disease they can’t see. They think it is just bad periods, women complaining simply to complain. Or they assume that because it can’t kill me, it doesn’t matter. After all, it isn’t cancer, right?

I’ve actually had people pose it to me exactly like that in the past. “Be thankful,” they said. “It could be cancer.”

But they don’t understand what it is to have your body so completely and totally betray you. They don’t get what it means to be incapacitated by pain when outwardly, you look fine. They don’t know how scary it can be to complain, fearing that others may simply label you another “whiny woman” instead of recognizing the agony of feeling as though your insides are ripping you in half. And they don’t get what it means to want to be a mother more than anything in the world, only to have the hope of carrying a child ripped away from you long before there was even a chance to really try.

It may not be cancer and it may not kill me, but it certainly tore my world apart.

And as ready as I am to be done with this, to move past this disease and never have to think about it again, there is still a struggle that comes with considering a hysterectomy; with the finality of that decision. Despite feeling as though I have come to peace with the fact that I will never carry a child, once those pieces of me are gone, so will be the last shred of hope I may not have even realized I was still carrying.

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Still, I don’t want to be the mom laid up on the couch in pain. I don’t want to be the one enduring until bedtime, and then popping pills in secret to make it through. I won’t let my illness mar my daughter’s childhood.

So when it comes to that, should it come to that, I think I may find myself finally ready to say “goodbye” to those organs meant to create and house a baby.

Because I just want to be happy, healthy and strong. The kind of mother my daughter can rely on. And the kind of woman who doesn’t spend her days in pain.

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