You Cut Me Open and I... Still Need Surgery

11:37 AM

Chronic fatigue has clearly dulled my senses, so I bought reading glasses.
(I didn't know what picture to use for this, so I used one of me in my new reading glasses. After 25 years of perfect vision, I think my eyes are finally going. Either that, or chronic fatigue has officially dulled my senses.)

First of all, happy Endometriosis Awareness Month, everyone! If you're doing anything really cool to promote awareness in March, let me know in the comments. I just submitted a letter to the editor to my local paper that I hope gets picked up.

I kicked off this month right by visiting my ob-gyn this week. Fun times all around! If you've been following my recent posts, you'll know that I haven't been feeling well lately. 

I described my pain ever-so-eloquently to my husband, Andrew the other day as "It feels like someone took a needle and just stabbed my uterus all over. And then, they went to my right ovary and punched it a bunch of times. And then, they grabbed everything and squeezed it in their giant hands. And then, they probably poured rubbing alcohol over it or something, and now, I'm upset."

It's obvious that I'm a writer.

So it was clear I needed to see my doctor. I actually tried to get in earlier than this week, to no avail. As I sat in the waiting room, I ran through all of my symptoms in my head, trying to rehearse what I was going to say. It's hard to remember everything when endometriosis has such a variety of side effects that, in my case, like to change from week-to-week.

"Okay, so I have to mention the stinging because that's new. And if she asks how much pain I'm in, on a scale of one to 10 (ugh such a great question...), I'll say an eight. Oh, and I can't forget to say what happened two weeks ago because that was important. And..."

My ob-gyn walked in as her normal, chipper self. I appreciate her optimism in the face of my frustration, especially when the advice I got from my previous ob-gyn was "Just go have a baby, and that'll fix it."

Actual footage of my reaction to this suggestion
My current doctor always seems to have some sort of idea or another thing we can try when my medication finally fails me. But when I began to describe my new symptoms to her, she frowned for the first time ever.

The first thing she did, unsurprisingly, was offer Lupron. I immediately shook my head and said, "No. I don't want to do that." 

If you're unfamiliar with Lupron, it shuts down your uterus and sends you into a brief menopause to help manage endometriosis. Unfortunately, it comes with a slew of just awful and horrifying side effects. I know that's a bit of editorializing on my part, but I haven't heard a single good thing about this medication from anyone who has taken it. Most experience things like like bone pain, weight gain, additional pelvic pain (lolwut) and your traditional menopause symptoms. And yet, it's often offered as a cure-all for endo. (READ: It's not. Endo can still grow while you take it...)

Thankfully, my doctor respected my decision to not take Lupron. But she then said, "Well, I've been treating you for about a year now. And usually after a year, if medication isn't working anymore, I'd like to do a surgery."

Surgery.


I had a feeling this was going to happen soon. But I had really, really hoped I could push off a surgery for a little while longer. My first (and most recent) one was when I was diagnosed in December 2014. So now, just slightly over a year later, my endometriosis has likely grown back and, judging by how I feel, spread.

My doctor noticed my discomfort and said, "Well, excision is the only real cure for endometriosis." ...wait, what? Yes! YES! I have a doctor who actually recognizes that! 

If you don't know a lot about endometriosis care and treatment, it's often hard to find a doctor who actually recognizes the importance of excision surgery. (This involves removing growths and scar tissue while preserving as much of the surrounding organs as possible.) Many doctors recommend hysterectomies to women even younger than I am, which, believe it or not, does not cure endometriosis.

Now, if my doctor is an excision specialist, I'm not aware because I'm dumb and didn't even think to ask. (But trust me; I will.) But just knowing she understood the value of doing this procedure made me feel a little better.

But still, is it really time for surgery again? Right now? I really thought I had another year or two to go.



I left my doctor's office with a prescription for the painkiller, Tramadol (FINALLY!) and an appointment for an ultrasound to see if I did need surgery right away. This would detect any major nodules, cysts, tumors, etc. that would need immediate removal and, if there are none, would help determine if I wanted to have surgery now. Also, she tossed around the idea of testing me for interstitial cystitis, which is a bladder condition that often accompanies endometriosis. I'm pretty sure I don't have it, but HEY! Let's check for ALL THE THINGS.

To be honest, I felt a little defeated after all of this. I mean, I got answers and a prescription for a painkiller, which I've never, ever been given. (I've been fighting pain up until this point with Aleve and heating pads. It's super, sometimes, rarely effective.) So that's good!

But it's so, so frustrating to know that virtually the one and only treatment for my disease is surgery.

So, what now? I have one surgery a year for the rest of my life? That's expensive. And diminishes my already decreasing chances at having kids, if Andrew and I so choose.

And on top of that, what will that mean for my quality of life, long-term? It's a minor surgery, yes, but if I end up having five, six, seven surgeries some day, will I be able to do things the way I want to? Will I be able to keep up with my fitness and enjoy going to the gym like I can currently? I can live with a scarred-up abdomen, but will I eventually regret the internal scars these surgeries leave?

I never thought this is what I'd end up doing with my health and my life. But as my mom said, we do what we have to do for our health. And I really, really shouldn't feel sorry for myself, but ugh, seriously? I'm 25, and I have a lifetime of this ahead of me?

It just sucks that this is all we have to offer young women. "Sorry about your uterus. Here's something that will help for a little bit and then not help anymore." Sure, if I see an excision specialist, it would be more effective than having just any ob-gyn perform my surgery. But will my insurance even cover a specialist in another state if my state doesn't have one? And I mean, I'll eventually have to do this again, right? Is it worth the money?

And of course, I don't have good answers to these questions at the moment.


Right now, I'm desperately trying not to get too far ahead of myself. I have great health-care, a decent health savings account and an ob-gyn who believes in me. That's a lot better than many women out there have because yay, endometriosis is poorly researched. 

So I'm taking it a day at a time. I'll face this ultrasound, and then I'll go from there. And if it involves getting frustrated or angry or crying, then I'll let myself have my moment, pick myself up and do what I have to do.

At the end of the day, I just want to feel well. I know I'll never be "normal." But I'll settle for "normal enough."

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