A place for endometriosis survivors & supporters, and all that goes with it.


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#TBT to the first time I published my #endostory

I recently had to clean out my desk and pack up 10 years of memories and collectibles (and, let’s be honest, papers and condiments and dusty old fortunes). Among my discoveries: the long-lost copies of H Magazine from 2009, in which I lay out my excruciating and embarrassing first emergency room visit for extreme pelvic pain and heavy bleeding, describe some of the more graphic details of life with endometriosis for all my coworkers to read, and required our senior Graphics Editor to make a graphic of what endometriosis and adhesions look like. (Sorry not sorry, Steve.)

The story took a big edit and you can’t even find it online any more, since the magazine is no longer in print, but I was still happy — and maybe a little strangely nostalgic — to find these copies and to know they haven’t been totally lost and forgotten. I’d love to take another crack at this and rewrite this article, to update the facts and improve the prose. Maybe now that my schedule has “opened up,” as they say, I’ll have both the time and resolve to do so.

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Pro tip: What not to drink for your ultrasound prep

So I chugged this 33.8 fl oz bottle of caffeinated water (my beloved Water Joe) to be ready and “full” for ultrasound. Wait an hour past my appointment. First thing the tech says when I get called back: “Use the bathroom and empty your bladder. The internal pictures were much better last time so I’m just going to do those.”

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All that delightful Water Joe for nothing, on an empty stomach. That’s 120mg of caffeine, equal to two cups of coffee, or two espresso shots. It doesn’t sound *so* bad, but my thumb is shaking as I tap out this post. I can feel my eyes are HUGE, almost pie-eyed, and there’s an odd pressure in my head. Oddly, I do not feel any more awake. In fact, I’ve been yawning through my heart flutters.

I do still have to pee.

DEAR GOD I’VE MADE A TERRIBLE MISTAKE

Live and learn … At least the good news today is that my 3.6cm cyst is now 2.5, so no cyst removal for me!


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Guilt over not participating in my own life (or at least Star Wars Weekend)

Can I just vent for a minute?

I am really getting down and sick of how unpredictable and uncontrolled my endo and adeno pain is. I am trying to live any sort of social life but end up just going to work, surviving, going home to sleep, and repeat. And I’m getting upset over ridiculous things. Tomorrow, for example, I have been dying to go to Star Wars Weekend at Disney in Orlando, especially since this is the last weekend of the year and Mark Hamill and Billy Dee Williams will be there. I have been talking it up and getting excited. Today, I wake up and I am beyond thrashed. Well, I say wake up, but I really mean “have several short naps from 3 a.m. to 2 p.m. and finally pour myself out of bed and stumble around the house like a zombie.” Hell, I’m still in pajamas right now! I haven’t even taken anything for pain, even though I’d like to! I am trying to work myself up to go out to have dinner at 7, I can hardly fathom getting on the road at 7 a.m. to spend the day in the heat in Orlando and drive back that night. And what about my pain management? I am back to rationing my meds each day, and the codeine I’m sorry to say is not really effective. It’s a difficult admission. So I have people here and in Orlando that know I *might* come, but I might not, and it affects not just me because there’s getting the dog cared for, and making sure I have clothes I can actually wear through the day, and staying comfortable. I just don’t know. I’m exhausted at the very thought. Another opportunity for fun, probably down the drain. Another year of planning to go, gone.

The pose on this statue by Rodin just cries Shame to me. Image found via Google Creative Commons.

Statue by Rodin, image found via Google Creative Commons.

I already had to decline the wedding invitation of a friend I’ve known for 20 years because I’d be in Chicagoland alone, and with as weird as my pain has been, I can’t risk being stuck in a hotel room or banquet hall and not able to get around, or not be able to wear pants, or swell up to pregnancy size. Or worse, being in total incoherent pain and not able to care for myself, or get back to my hotel, or having to explain myself to someone there, spending the money and not being able to go or drive safely, and and and … I just can’t risk it.

I know I get stuck in this cycle of making decisions based in a place of fear. But I feel like I’ve done a hell of a lot pushing through my pain, especially college and beyond. Now I feel like it is catching up to me. And I feel such extreme guilt over not being able to do participate in my own life. It can’t be healthy.

These aren’t the first events I’ve had to sacrifice in the name of endometriosis. I guess they won’t be the last. And that is infuriatingly sad.

I wish very much that I could just make decisions and go and do and not have a million “ifs” and items to tick off the list. Isn’t that what normal people do? They get to go and do things and not have their pain sitting on their shoulder (or anywhere else, for that matter), guiding their life experience? I can’t be the only one who feels like this.

Maybe I’m finally getting to a point of making that Very Difficult Decision.


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A new look: I know, it’s about time

Let me know what you think of the new look of the Endo Sucks! blog in the comments below!

Hopefully the change in theme will eliminate some of the problems people had with image sizes, but if you have any problems, please be sure to comment on the post in question.

Thanks for sticking with us since 2008 and our old format — which, I have found, isn’t even a theme offered by WordPress any more. Talk about vintage.

x – Chanel


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Need another reason to stand up and #educateDrDrew ?

Oh, if you insist.

I have seen this several places tonight. Here is an entry from Grass Fed Girl – her report, and her educational story.

Click the photo or this web address: http://www.grassfedgirl.com/dr-drew-hassles-jennifer-esposito-about-her-celiac-disease/

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UPDATED: Ovarian Age is just a number

I waited all week to call and find out my anti mullerian hormone results — it was a crazy week at work and I didn’t want to add to the madness if the news was bad.

Good call.

I heard back from the fertility institute within an hour of calling today. And it seems my AMH level is poor … 1.4. The doctor is in Tallahassee and will call Monday to discuss plans/what this means, but they told me the number over the phone. Depending on which AMH scale they used, it’s either poor/low or basically menopausal. Waiting for the nurse to call back and clear that up.

I knew at 23 that my ovaries were starting to age; they could see it during surgery, but my reserve was good then. But I also had two ovaries still.

Did I miss my “chance” after all?

Am I a 30-year-old who blogs about this now?

They had these bracelets at the check-out desk at the fertility institute; I was upset when I saw it at first. Now I wish I had taken one. What I hope for … I’m still not sure.

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I was going to go to the driving range, but now I’m feeling pretty dizzy … may be a day to stay home …

**UPDATE!** The nurse already called me back, and the scale they use is ng/mL. So my number for AMH is 1.4 ng/mL — not a 100 percent disaster, but still not good.

The nurse is of course careful to remind me that there are other factors at play as to what this might mean: my age (which is young!), previous infertility (facepalm), and the number of follicles he could see on my ultrasound without stimulation (it was about 4 when I saw this doc for the first time). But still … there’s a big difference between 1.4 at age 41 and a 1.4 at age 30.


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Go out and grab…

My mom’s quote of the day


My mother’s kick-in-the-pants, go-out-and-do-great-things-because-you’re-awesome, inspiring words of the day. So good it deserved to be made with sparkly text.