Endometriosis…There, I Said It

Endometriosis Fighter

I haven’t ever written about this part of my illness and chronic pain journey before, partly because I wasn’t sure it was socially acceptable to do so. I’m still not sure it is, but where the Spirit leads…. I’ve openly written here at my blog about many a debilitation and catastrophe: The Suicide Disease (Trigeminal Neuralgia), infertility, a neck injury forcing prolonged muteness, my home getting totaled four times by natural disasters. But, this one is different. Just tossing a term that references female reproductive organs out into the open air like this, well, it feels risky—out of the accepted ordinary, at least. But, you only live once, so…ENDOMETRIOSIS. There, I said it.

My emotional constitution was created to be (overly so for many a person not created this way I’m sure) naturally comfortable with extreme vulnerability. So, it’s not so much embarrassment that’s held me back. I suppose I’ve hesitated for two main reasons. First, when you write a blog you actually want people to read it. And second, if I’m honest, I’m not 100% sure I can effectively encourage women suffering with endometriosis despite having it myself. And per chance I can’t, then what’s the point here? I’ve felt many a day that I failed to conquer it myself (although my very gracious doctor argues with me over that point, expressing that facing it head on and achieving a high quality of life in the midst of it is a job well done). I don’t want to write a blog that leaves anyone saying, well that didn’t help me a cotton-pickin’ lick.

In other venues of writing I’ve done, I’ve championed alternative and holistic medicine. I haven’t written much about that type of thing in this blog yet (wait for it…I can’t have a conversation for five minutes without dovetailing into it, like I probably am right now…). Normally I come out of my bouts with “uncurable” chronic illnesses and injuries with rather absurd but thank-God true stories of healing using unconventional means and therapies. For example, to my surprise and delight, one session of cranio-sacral therapy freed me from a decade of migraines. And with a good, long focus on lifestyle tricks and food-as-medicine techniques, my holistic heroes won my also decade-long battle with Chronic Fatigue Syndrome/Fibromyalgia (stemming from a chronic infection, adrenal exhaustion and a damaged gall bladder meridian, but I believe the possible causes are many and varied for that diagnosis).

I have no such story today. I had endometriosis for a significant chunk of time—fourteen to 29 years, depending how you label it (29 makes most sense to me in hindsight). In the end, I simply had to surrender and remove the offending organs and tissues. That didn’t feel like a victory to me.

I’m not exactly sure why I saw this as a failure. Someone who removes an appendix or gallbladder doesn’t tend to cry, “I failed!” I suppose after all the healing I’ve experienced when I purportedly shouldn’t have (according to mainstream medicine) I’m an all out, sold out believer in the body’s ability to fix itself given the right tools. And given my all out, sold out belief in a God who heals, I viewed a release from the debilitation of endometriosis without extreme measures as entirely possible.

I’m not going to describe the details of endo. I still see refraining as considerate in a mixed company audience. (There’s actually no person, man or woman, who’s heard every detail of my endo journey, and I guarantee that’s true for every endo sufferer. It’s the nature of the beast.) I do think we best leave some aspects of life to private and rare conversations. But if you have endometriosis, you don’t need the excruciation and utter desperation explained to you. It’s good enough to talk about the effects, not the cause. You know what this illness controls; you know intimately what it steals and how, the times you couldn’t show up or be fully present but couldn’t say, “It’s because I’m hurting SO badly.” You know that even when it lets up, it’s going to be back around again more days of the month than not and the dread that has to be fought every day. And my heart is broken wide open in compassion for you.

I also guarantee that if you don’t have it or even know what it is that you do know at least several ladies debilitated by it. But you likely don’t know that they are or that it absolutely runs their lives. These ladies manage the same life you do without being in control of what days their bodies allow them to live—the truth about most all chronic illnesses, which you know if you have one of the many shades and varieties of them.

It’s the anonymity of the endo struggle that adds to the uber pain already being suffered. I’ve had two utterly overwhelming situations in my life that I couldn’t appropriately speak about openly, because they just weren’t for public, or even semi-intimate, consumption. Only a person or two could rightly know (or handle it responsibly). A favor you can do for the ladies you care about who suffer this is just to understand that gagged suffering (because it’s not a socially acceptable or understood topic of conversation) is the worst type. It leaves the patient engaging the challenge without the support of those they love most—or at least to the degree they’d have it if they had cancer or diabetes or…or…or something readily discussed out loud, NOT that those are things to be wished for either.

So, what can I say directly to these ladies? Can I legitimately tell you to forward this to them, claiming I can provide some comfort or insight? Is there any balm I can apply when the only way out of endo is a painful road with possible side effects, as well? What kind of encouragement is it to say that even when you try to remove this insidious intruder you’re a patient for life, because it doesn’t always work, or work indefinitely, even when you try the most effective solution known?

I find I’m then left with two trains of thought for you or the loved ones you might be thinking of right now. I pray supernatural power into these words to compensate for that which doesn’t feel like enough:

  • I see you, dear women and girls. I see you. When you’re in a fight that must remain invisible to most, there’s such a natural longing to be seen, to have your cries heard, to be embraced and upheld when you’re so bone-weary tired. Of course, I’m not the omnipotent Upholder. I’m not the ultimate, omniscient Embracer. I’m not the omnipresent Hearer or Seer. I pray for each endometriosis sufferer out there that they know Him—intimately know—so He can get them through the lonely times and the times they don’t feel they’ll survive the physical pain one second longer. But, if it helps at all to hear a random blog from a random endometriosis survivor saying, Your pain is important, and you can make it, and you are enough as a woman no matter what body parts you get to keep or which you lose, then I’ll scream it from the mountaintops of Pennsylvania today. God formed you in your mother’s womb (although even that can be a painful phrase during this illness, apologies). He isn’t abandoning you today, like you might feel, and He hasn’t ever. Ever. Ask for His answers, because He has promised to give them. And take them, however he sends them, whenever He does. You are able to endure until His time comes, precious ladies. And though the world knows not fully of your strength today, they will someday.
  • Sometimes the white flag of surrender does work. I tossed it, at a relatively young age. I didn’t want to. Like I said, submitting to serious drugs for a time and, ultimately, permanent and unchangeable surgery felt horrid at first in many ways. I worried it would be all for naught if it resolved nothing (or God forbid, made everything worse). And I personally suffered severe complications for the better part of a year that nearly broke me and so thought I’d made a mistake. (I will say, find the right surgeon. Study, get referrals, ask around, pray. Right surgeon crucial!) But it wasn’t a mistake. It was respite, eventually—beautiful respite. I didn’t fail. I’m human, and I accepted the only help left at the time after trying everything else under the sun at unbelievable personal expense and endurance.

There isn’t failure in faintly whispering in exhaustion, I can’t do this this way anymore. I let go of what I thought could be (biological kids, a female body as it would have been in Eden, avoiding the side-effects of the solution…). I’m not letting anybody down. I’m letting myself down if I go on indefinitely sacrificing myself to this. There are no guarantees, but I have to gamble that a more severe procedure can bring peace, like the threshing floor of wheat is the only way to bring a harvest. It’s a final step in turning an inedible, useless kernel into sustenance for many. You, and only you, will intuitively know the right time to cry uncle.

I’ve never let you know when I’ve cried writing different parts of my story. But, I willingly say that I am right now per chance a dear, suffering heart may benefit. If no one else has known or is able to say to you with a tear in their eye, I know your pain, and I’m sorry, then please hear me now. I do. You are seen. You are heard. You are able. You are strong. Let’s be in this one together, quietly unsilent. Until your healing, I hear, and He hears. I see, and He sees.

With Hope and Heart in Hand,

Carolyn

Presented by Writer’s Block Prose, LLC

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