Endometriosis, You're Up Next

It has been awhile since I've done any sort of comprehensive blog post detailing the sole aspect that dictates my life...MY HEALTH! Or lack thereof, I should say. Haha! I genuinely did laugh at that as I typed it out. Probably sounds morbid, but the truth is that I've had far too much coffee today to be affected by anything. Is this what being invincible feels like?!

Back to the subject. Almost 7 months ago to the date, I wrote a post titled The Progression which answered many of the questions I was receiving from friends and family regarding a rather major upcoming operation. I'd like to say this time it's not as *serious,* but the fact of the matter is that every surgery my body undergoes from this point forward is going to be considered high risk. Especially when we're dealing with the abdominal/pelvic region.

Perhaps I've peaked your interest? Now you'll read the entire post and end up knowing wayyyy more than you ever wanted to when you clicked this link. Major TMI about to go down. Consider that your warning!

Yesterday, I had my pre-op exam/labs for a laparoscopy at the end of October. As per usual, this next surgery involves a rather private? sensitive? uncomfortable? region of the body. In August of 2015, an ultrasound revealed significant endometriosis growing on the outside of my uterus. The images clearly showed that my uterus was/is also what they call "retroverted" or "tilted." Let me break that down a bit...

Endometriosis is a disorder in which the tissue that typically lines the inside of the uterus grows on the outside. Usually, if the spots/growths are small and directly on the uterus, strange bleeding and pain is pretty minimal (full disclosure, though: EVERY woman's body is different in responding to this awful disease). There is no way of telling or knowing who will develop this messy disorder and, to put it frankly, endometriosis knows no bounds. 

This stuff is kind of like that 3-year-old kid who is all over everybody, all the time. You know what kid I'm talking about? The one who doesn't understand the concept of personal space or the fact that most people have a "bubble." (I love strange analogies, but even I'll admit comparing a child to uterine tissue growth is too weird. LOL!) These unwanted growths can spread to the intestines, ovaries, fallopian tubes, and even the bowel causing severe, daily pain as well as menstrual irregularities.

Retroverted uteruses on the other hand are completely, fully, 1000% genetic. Some people are more "predisposed" to them than others and some people go their whole lives without knowing they have one. However, if there is an autoimmune presence, this tilt becomes significantly more "pronounced," as they say. Perhaps I was born with this finicky uterus; perhaps the presence of autoimmune inflammation and eventual endometriosis caused it to tilt. We will never know and at the end of the day, it really doesn't matter. It is what it is.

I found out about my endometriosis in August of 2015 when I saw a gynecologist for the first time. She discovered all this nonsense and additionally noted "significant fluid within the pelvis and presence of multiple cysts." As we went over my imaging, she prescribed me birth control pills and told me to come back and see her when I wanted to start a family. She dropped the words "probable infertility" due to my autoimmune history and the state of my uterus...then sent me on my way.

I went back to see her several times -- particularly when my bleeding/pain was incessant. Each time she suggested IUD insertion. For a host of reasons, I was squeamish about this option at the time and denied it at every visit. We tried a few different kinds of birth control pills and nothing seemed to improve.

If I'm honest, I would say my symptoms have increased by 50% since I first saw her last August. Finally, last month, I knew I had to make some sort of change/decision/commitment. I had gotten my period the 2nd week I was back here at school. For the first 5 days (of a SIXTEEN day cycle...SIXTEEN DAYS) I was constantly laying on the heating pad and taking excessive amounts of Tylenol. Running low on endurance and hope, I ended up calling the nurse line and they scheduled me for an appointment with a new gynecologist at the same clinic within a few days.

I went to my appointment that Friday and immediately the new physician said "why the h%#$ haven't you had a laparoscopy yet?!" With hormones and emotions running high, I was able to utter out the words "I don't know" in between sobs. She sat with me, handed me tissues, and assured me that I would not be leaving that exam room without a plan. Her biggest concern at this time is that the scar tissue that has already formed and settled will render me infertile...especially if we allow it to continue to grow and make a mess of my pelvic/abdominal cavity. "Probable infertility" were words uttered from her mouth, as well.

We discussed several options and narrowed it down to a laparoscopy in which she will cauterize every little bit of endometriosis she sees, biopsy cysts/abnormal tissue, and insert an IUD. Sounds straightforward and simple, but with my previous colectomy incisions-- "we are going in blind," as they say.

The concern is that the scar tissue from April's subtotal colectomy will have caused organs like my bowel to "shift" or find themselves resting comfortably in a new region of my abdomen. Since there are wide open spaces in there (Dixie Chicks reference anyone???), it is very possible that things have settled where they typically wouldn't.

To prevent any life or death situations, a general surgeon is scrubbing in with my gynecologist right away. (She is speaking my love language by being preventative!) It is possible I'll stay the night in the hospital depending on what everything looks like post-op, otherwise it'll be straight-up outpatient.

I haven't had an excessive amount of stress or anxiety about this upcoming operation (surprisingly) but I have had a hard time "grieving" the concept of (in)fertility. I just turned 21. I have no plans to get pregnant any time soon and for most of my life, I have pondered the way in which I desire to build a family when the time is right. Adoption has always, always been "the frontrunner" and I can't think of any other way I would want to bring precious babes into my life.

But the fact that adoption is so uniquely beautiful doesn't negate or invalidate the grief I feel about having heard the words "probable infertility" over and over and over again the past year and a half. 

Young girls become teenagers...eventually those teenagers become women-- and their whole lives through they watch the women around them carrying precious babes, giving birth to precious babes, and repeating the process. By the time we enter womanhood, we have been socialized into thinking that one of our "duties" [as women] in life is to carry a child in our womb.

Now, I am not trying to rip on anyone's decision to build their family through having biological children. I am not saying that the way God created women's bodies is not remarkable or intricate and so wonderfully fascinating. In fact, I support both of those things wholeheartedly. As a nanny, I have watched the process. And that process-- the process of building a family-- continually leaves me in awe, truly. What I don't support, though, is the stigma or "less than" mentality that one can experience when biological reproduction is not in the cards for them.

You're probably thinking "Kenzie, you don't need to worry about that right now." To that, I will say "yes, I do." At my appointment two weeks ago and again at my pre-op appointment yesterday, the discussion of removing my uterus, ovaries, and fallopian tubes was placed on the "long term plan" timeline. Long term meaning "whenever you solidify your decision to not have biological children, Kenzie." Long term meaning "whenever you've reached your maximum pain threshold and the endometriosis has grown back with a vengeance, Kenzie." 

That is the future of my biological womanhood. That is the future of my overall health and quality of life. That is a decision that certainly takes time to process, reflect upon, and ponder. That is something that my significant other (one day) must accept about me.

These are the ramblings of my heart...the things that keep me up late at night and then inevitably work their way into my dreams. These are the thoughts and feelings I choose to share here on a public blog. Why? Because I know I am not the only one. From just 2 Instagram posts [regarding endo] over the past few days, over 30 women have messaged me privately to tell me about their experience with endometriosis, chronic pelvic pain, and infertility.

What is harrowing to me is that more than half of those women stated "I thought I was the only one." What is even more harrowing? That the number 30 only surveys my small community and does not account for the women who did not feel comfortable speaking up.

I refuse to shut up (as many of you faithful friends have noticed)...and I think that's where the remarkable Ask Me About My Uterus movement stemmed from. Women who wouldn't shut up. In the best way.

So, label me a worrier, over-thinker, over-analyzer, and the like. You wouldn't be totally false. But you would be grossly generalizing over 176 million women, including myself, who face incredibly tough decisions about their biological womanhood daily due to endometriosis. I'll leave it at that.

Cheers and prayers to October 28th and my first official laparoscopy!


A Response to Being Diagnosed with Hypoglycemia

Today: Fewer words typed out. More words spoken. And even a few tears cried. On video.

I don't know for sure why I felt so strongly I should to film this video the other night. I don't even know if I successfully articulated the things I was attempting to get across! But what I do know is that I want this space to be real and raw, and in order for it to be just that we all have to share the hard things, too. In fact, not too, but especially. We have to share the hard things especially.

The things that would be easier to keep to ourselves. The things that hurt and haunt us. Our stories....pasts, presents, and futures...no matter how daunting, messed up, or complicated...are the very things that hold the healing we so desperately seek.

I truly, truly believe we do ourselves and the God who created us a HUGE disservice when we ignore an opportunity to share the way difficult trials can truly be revolutionized into an opportunity for more assured and solid hope. When we are vulnerable and honest, however, we can move to a place where we are the furthest thing from alone. In addition, we give others the freedom to learn they are not alone, either.

Since my subtotal colectomy, I have struggled intensely with low blood pressure and what we most recently recognized as low blood sugar. Though I know adding hypoglycemia to my laundry list of diagnoses is not the end of the world, it is something that has greatly affected my independence the past few months...and last week, hearing those words affected my emotions greatly as well.

Watch the video below, and I'll fill you in a bit more...

I have gotten quite used to Methotrexate (chemo) Saturday nights and Humira (biologic) Wednesday nights. I have worked through a fear of needles and conquered these injections week after week all while learning that I can only do my best. Some occasions hurt worse than others-- sometimes tears fall and sometimes they don't even scratch the surface-- but all in all, injections have inevitably become a part of my life.

Checking my blood sugar will become a part of my life in the same way. I will figure out this "new normal" and learn the ins and outs of how to maintain this crazy blood sugar of mine. I will eventually learn I can't "forget" to check my darn stats before I eat a meal, after I wake up, or when I'm feeling all sweaty, insanely shaky, and shivering my ever loving booty off. I'll learn. And as I learn, I'll continue to grow.

One step, one finger prick at a time. :)