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

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Endo Sucks, Day 15: Be at peace (Co-worker support part one)

Last night was a stressful night that ended in a spurt of rage. I was super irritable and irrationally angry the two days before that. And I’m already anticipating feeling pissed at least once in the next 24 hours. Not a really good boost for positive health.

But after some venting about it on Twitter, my co-worker Al sent a remarkable tweet. First he asked if there were any “calming beverages around” (there were none; I was still at work and we have little alcohol at home). Then we had the following exchange:

A fine mantra for us all.

It seriously froze my anger and gave me calm; calm enough to start thinking about why dumb comments from strangers should be allowed to affect me so. And they shouldn’t. But because I am so deeply wrapped in this, and care and fight for my health and that of others, yeah, it’s going to spark a fire when you challenge or insult that. But I have to let it go.

And so I also present to you a photo of Al, my co-worker who is apparently also Buddha. He has been supportive of the Endo Sucks! movement and Endo Awareness Month, and even tweeted me specifically a while back to request a yellow ribbon from me. And so here he is:

Al, repping for Endometriosis Awareness Month!


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Let me just put a little disclaimer out there: When it comes to managing our health, we are all on the same team. Everybody has different ways of handling the physical and emotional aspects of endometriosis, PCOS, adenomyosis, infertility and beyond. You might feel how one person is managing their endo is radically outrageous, or you might be simply offended by hearing someone speak at length about an issue that gets them excited. But nobody is forcing you to change anything, and if hearing new information upsets you, walk away. It’s not a challenge. It’s honesty.

Just a friendly reminder that only spirited discourse will be welcome here. No snide comments, no fighting.

Of course if that were the case everywhere, we wouldn’t be having a raging national political war about how women handle their bodies. But that’s almost not relevant here. ::sarcasm::

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Endo Sucks, Day 12: The best endometriosis video I’ve ever seen

Seriously, this is the best video breaking down what endometriosis is about that I have seen to date. It is perfect for sharing as an introduction to endo or as a refresher.

Click the image to see the video.

Produced by Endometriosis.org, it is currently being featured on the the website of Bradley Method instructor Kim Stanley in Tallahassee, Florida. A doula friend of mine, Erinn Streeter, works with her on her website and they have had this video on their welcome page for the month of March to honor endometriosis. I think that often, endometriosis survivors are so beaten down by the medical system even as we try to work with and fight within it, that they enter childbirth the same way: hands open and begrudgingly accepting whatever the doctors provide, without question. This is probably true for most Western moms-to-be — far too many, in fact. It has produced an C-section epidemic and shot maternal mortality rates so high because we are taught to live life in fear and pain and to ask no questions.

But we have options in our healthcare — and if you take one great thing from endometriosis, PCOS or adenomyosis, let it be the advocacy you are practicing for your healthcare. YOU are the best thing that can happen to you! Nobody else can advocate for you or educate you if you do not take a personal investment in knowing how strong you really are. I was worried a few years ago that doula training might mess with my emotions, but instead it rocked my world and opened me up in awesome ways. I am never more proud than when I am welcomed by a couple into the most powerful journey of their lives, no matter how their birth unfolds. At least they went in educated, open, and knowing not only that they are made of power but that they have a world of loving support around them.


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Another crazy weekend

Because of the wackiness that is journalism, my weekend is Thursday and Friday. But it came in handy today as it was International Women’s Day and I was able to participate in the third annual international Join Me on the Bridge event. The event began when women of Rwanda and the Congo met on a bridge to sore they could literally bridge all the issues between them and unite in peace. The idea caught fire and now women around the world -particularly war-torn countries – are participating to end gender-based violence. In jacksonville, we marched downtown to the Main Street Bridge with signs and tossed flowers into the St. Johns River to honor the many women who have lost their lives. It really was amazing, and it was very well attended! Photos will be posted tomorrow.

After getting rain-soaked on my walk back to my car, I went by my friend’s office to visit her and borrow The Hunger Games. (Jen was supposed to attend the rally with me but was feeling under the weather.) After that, I visited my mom at her job at the hospital and went to get some dinner, brought it to my mom’s house, sent some photos to the paper (unused but that’s OK), fought with Verizon sucking, and fought with all in my RX arsenal but eventually succumbed to a piercing migraine.

As soon as I got home, I took took two codeine and let nature take its course. So here I am: at home, finally eating dinner, little dog curled up with me on the couch, and watching random reruns on TV. My lips feel numb. And it’s only 9 p.m.

Just another wild “Saturday” night.

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Everything I do, I do it for you

I love you guys. Seriously.

I want to take a second to thank everyone who still checks here and apologize profusely for not making more time for this blog. With March (Endometriosis Awareness Month) just a day away, I’ll be back into the annual blog-every-day swing and hopefully that will keep me on track.

I’m also inspired to write here right now because of a long, personal and very touching email I received the other day from a dear reader named Kelly, who at age 21, has had a real fuck of a time dealing with shitbird doctors and the medical malice that is endometriosis, as so many of us do. Her email was extremely touching because she took the time to reach out to me, a basic stranger, and share her story. She also let me know that finding this site, and hearing our collective kvetching, made her feel less alone. And I hope she doesn’t mind me sharing the following snippet from her email:

“I kinda just needed to know someone else out there truly understands the fucked up reality that your body can be your own worst enemy. Thank you for some distorted version of renewed hope :) ”

I received her email when I checked Gmail on my new telephone, while I was at work. And I cried. And I wrote back some words of (I hope) support, information and encouragement. I haven’t heard back yet, but I hope I do.

I started this blog and the Facebook Endo Sucks! group a lot for me to connect to other people, to share and connect, though I assumed it would be mostly me shouting into the vastness of the digital landscape.

I was happily wrong.

I have found so many other people, in my town and far-flung across the globe, who share so many of these experiences practically verbatim. New people join the Endo Sucks! group every day. And with the Twitter feed, I’m getting to talk to even more people, organizations and even celebrities who are standing side by side in this maddening battle.

We exchange ideas. We support the bitching and the baby news. And most of all, we are all there for the primary purpose of helping each other. We are a diverse group who, with the twist of a chromosome, are united into one collection of daily warriors. And we grow every day.

It has served its initial, limited purpose of helping me know I’m not alone. It saves me every day. But it’s so much greater than that now. And from what you’re telling me, it saves you too.

I could ask for nothing better. So I promise to do right by you: to expand the reach of Endo Sucks! and to be more consistent here. Because you deserve it and I need it. We all need it.

Thank you for making this more than one thin voice in the dark.

Side note: Kelly tells me she found this blog by Googling “fuck you endometriosis”. I tried it myself and Endo Sucks! was the first non-paid link to appear on the results page. It makes me feel like a motherfuckin’ warrior. That is too awesome. Try it yourself; I did. The result:



Endo and Endo Sucks! is now in print!

“How much do you really know about endometriosis?”

So reads the title of my first-person informative article on life with endometriosis, published this month in H Magazine. The free magazine is published monthly and is distributed to public racks, doctors’ offices, hospitals and other medical institutions across Florida’s First Coast. I had massive anxiety about it and I think made my editor believe I had a rotten time with it, but in the end, all the positivity has been worth it, because that means people are reading, sharing and knowing they are not alone. That makes it all worthwhile.

Below is a copy-and-paste version of the article. You can also read it here through the month of September. If you like it, e-mail Editor in Chief Joy Batteh-Freiha and let her know (and definitely forward me a copy of your thoughts to endosucks@gmail.com)!

Thanks, everyone — hope you are all feeling well today!

How much do you really know about … endometriosis

At age 16, I knew I had it. I was lying on the floor of my parents’ living room drifting in and out of consciousness. I had gone from a quiet day alone to intense pelvic cramps and heavy bleeding. I remember calling my doctor before being too overcome to stand and hearing the receptionist insisting I respond. When I couldn’t, she sent an ambulance and I soon found myself in the emergency room with IVs in both arms.
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