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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Happy Endo March all around the world!

Wishing everybody marching for endometriosis awareness a happy, productive, and pain-free weekend! I love seeing the photos from all around the world as I’m perched on my spot on the couch, heating pad on high and little dog laying bored next to me. Keep ’em coming — wish I was with you! (All of you — I attended the original Washington, D.C., march, and who wouldn’t want to march in Scotland or France or South Africa or Canada!)

We’d love to see your favorite photos from your local endo march. Post them to the new official Endo Sucks! Facebook page, and you could see them featured on the Endo Sucks! social media! Be sure to include where you’re from and who you’re marching for.

happy


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It’s Facebook official.

Took us long enough, right?

Help Endo Sucks! grow this month by liking and sharing our official Facebook page, and inviting your friends to really, really like us, too!

Kat+Lia


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Ups, downs and the timing of the universe

The universe giveth, the universe taketh away and says “No no no, not in my house!”

After weeping my way through four hours Friday of trying on dresses (and walking away empty-handed) for an Easter brunch that ended up canceled by Saturday morning, my uncle shows up with a big basket of Jacksonville delight: Peterbrooke chocolates.

So much chocolate ... plus a yellow stuffed bunny. Mom gave up her white chocolate rabbit; her loss!

So much chocolate … plus a yellow stuffed bunny. Mom gave up her white chocolate rabbit; her loss!

Oh my. Among the bounty: chocolate covered potato chips; white chocolate covered Oreos; chocolate dipped pretzels; and of course, Peeps. In chocolate. Peterbrooke is the best. I always give their chocolate covered popcorn as gifts and — wait, why no chocolate covered popcorn in there?! Party foul, Peterbrooke, but know you are so easily forgiven.

This was the most amazing timing, as my Aunt had decided to come to visit about an hour before this basket arrived. You know, my favorite Aunt — and yours — Aunt Flo.

This is the first time the universe has ever sent me a gift basket. Never mind the whole chocolate-period cliche, I’ll take it. Hopefully I can eat some of it once I stop feeling nauseous. Stupid endo.

To complicate things, my mom and I just ordered a delightful set of meals from Jacksonville’s beloved Metro Diner as our Easter brunch and dinner (I still have to go to work, unfortunately). We’re talking poundcake french toast, bacon, lox & bagel, and the best grilled cheese on sourdough ever. EVER.

But as I was getting ready to go with her, my body decided that kick-in-the-head migraine you woke up with isn’t enough. No, the universe punched me in the gut, made me throw up all the water in my stomach, and I think it may have stolen my credit card.

My mom came running in all panicked but I’m sorry, this is what goes with the territory — not always, just when you need it least.

She went to get the food alone. Sorry, mom.

Off to wash colored dishes for the Easterland patio. I’ll post pictures later. My mom did a great job out there.

A merry pagan ova day to you all! Hoping for the ripping pains in my gut will subside and all will be well.


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You know your gyno is frustrated when …

.. You write “want to discuss BC” on your forms for your gyne annual, and when she comes in she’s wincing and saying “Do we *REALLY* have to talk about your birth control? Nothing has worked for you!”

Lucky for her I just wanted to remind her of the new birth controls I now receive for free (thanks, healthcare overhaul). Also lucky for her, I didn’t kick her in the ovary.

To be fair, she’s been my doc for years, and we have literally tried every. single. thing. Every pill, shot, insertion has been exhausted either before I got there or under her care, except for pregnancy (a fallacy!) or hysterectomy. It’s monumentally frustrating that not one thing has given me the promised relief of alleviating my period entirely, which I made very clear to her at this visit.

But it’s also very frustrating and insulting to be actively told you’re “that patient.”  That difficult one. It ain’t so easy on this side of the stirrups either, sweetheart.

Just a flamingly ignorant comment from an otherwise very supportive physician.


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The buttonhooks are back.

English: Buttonhooks with handles made of horn...

English: Buttonhooks with handles made of horn and wood, on display at Bedford Museum. (Photo credit: Wikipedia)

 

These, my lovers, are buttonhooks. These sharp little bastards were used to help cinch buttons into the buttonholes of button-up shoes, naturally.

And for several weeks, the little demon in my pelvis has been using one to get my attention at most inopportune times. Like at work. Or home. Or sleeping. Or just trying to pee. I usually describe my pains to physicians and friends alike as like buttonhooks pulling my insides apart. (I blame the move “Sybil” for working this imagery into my psyche when I was 16.)

And sisters, the buttonhooks are decidedly back.

This is how I felt constantly before my third laparoscopy: lots of ripping and stabbing, sudden sharp tears of pain that moved quickly from the left to right side, or punctured through the right of my pelvis down through the cervix. You ever been punched in the cervix? Probably not, but most endo sisters are going to know what I mean. Guys, try to imagine one of those long slender metal knitting needles being used to get a really bitching penile piercing, except it’s sliding up your urethra.

Yeah. That.

At the end of February I had a pain spell that knocked the hell out of me. I suddenly lost focus of vision, had ripping, dragging pain from left to right in my pelvis, and couldn’t catch my breath — if I breathed in more than a shallow pant, it hurt like hell under my ribs. I suddenly burst into tears, unable to deal with the shock and terrible feelings. I ended up lying on the floor for a good 40 minutes while the waves of pain increased and then gently floated away. I was glad to not be alone, and Phil talked me through it — mostly he was on the internet, asking my symptoms and entering them into a WebMD symptom checker. After each inquiry, he’d tell me the online remedy was “go to the hospital.”

“Try another one,” I’d reply. I’m not going to the hospital unless I damn well need to. Not only do they not deserve any more of my money, but all they’ll do is keep me cold and braless for 6 hours, take an ultrasound or maybe an MRI if they feel adventurous, and send me home with the classification “unknown cause, please follow up.”

Even just tonight I walked to the bathroom here at work. By the time I got there I was gasping — the knitting-needle-to-the-cervix pain left me breathless and sweating. And the damn things go as quickly as they arrive, so had anybody walked in as I was regaining composure, it would have been a bizarre scene indeed.

I know that my intestines aren’t that happy with me. More pain meds mean more constipation mean more pain — you can’t get around it. And my wonky overtime schedule this week has mean I’m neglecting the awesome essential oils I was given that actually seemed to start to make a gentle difference in my stomach situation.

But what can’t be denied is that I’ve been here before. I was a crumpled mess before my last lap (just go back a few pages, you’ll see) and when they went in — DAMN. Massive endometrioma in the right ovary which was stuck to the uterus and that whole clump stuck to the pelvic wall; the left sigmoid colon stuck to itself and the pelvic wall; endo on the bladder, the uterus, and knotting my ureters together (AGAIN) and for the first time, endo in the cul-de-sac and the diagnosis of adenomyosis.

And I knew I was in pain. I was blacking out from it, even behind the wheel. I was going two weeks with no BM (as I have recently, and it is NOT fun). I was weeping and narcotic drunk and not functional. And it STILL took 4 years, three doctors and a third surgery for anyone to believe it could be “that bad.”

I can’t wait that long this time. Nobody should. I may have exhausted my resources locally, but that doesn’t mean I will let my body suffer. I have one ovary left and it is mine, endo can’t have it, and my life is mine, endo can’t have it.

So I guess it may be time to travel again. You know, I’ve never been to New York City …


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Updated: Another way to show your supportive yellow!

I’ve just started using PicBadge to try and not only mark/protect my photographs, but also to easily tag photos for Endometriosis Awareness Month. I think this will be a great visual effort and reminder for people adding this to Facebook and elsewhere, and will hopefully continue to bring attention to and questions about endometriosis as a result.

I updated my 2012 endo portrait with the ribbon, and here is the result. You can position the ribbon anywhere on the photo you like. Let me know if you guys have issues with adding the ribbon and I’ll do my best to fix it!

Here’s the link for the Endo Sucks! PicBadge page. Go forth and add ribbons! :: http://www.picbadges.com/endo-sucks/3085495/#

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