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


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The 2013 Endo Challenge: A prep for Endometriosis Awareness Month

Holy hell, folks.

It’s the end of February. Which means it’s almost March. Which means (you maybe guessed it): Endometriosis Awareness Month is here again!

It’s a celebration of US, y’all. (Found on Google Images using Creative Commons license filter)

In previous years, I’ve tried to blog every single day for Endo Month. Sometimes that’s worked really well; other years, not so much (i.e. I’m still trying to get over the fact that I abandoned ship in the middle of the month in 2012 after a traumatic gyno visit, about which I *still* have yet to talk to anyone about).

This year, I’m going to take a different approach that I think we all will enjoy: More articles, more reblogs from other awesome endo folks, more photos – maybe not every day, but certainly no blogging famine either.

And in that spirit, I present to you a challenge. THE 2013 ENDO CHALLENGE, to be specific.

Here’s what I want from participants in the Endo Challenge: Set a goal, know why you’re setting it, and then go ahead and do it. Blog about it, tweet about it, post it in the Endo Sucks! group, email me about it — however you want to communicate it so we can share together.

For example, my first Endo Challenge for myself: NO MORE SODA. No sugary drinks, no sugar-free drinks. I don’t know how many more articles and charts and studies I have to see before I give up the ghost and admit the negative effects my caffeinated indulgence can have: cellular damage, the terrible effects it can have on metabolic rates and sugar spikes, inflammation, the unsavory effect it has on your teeth …. UGH. As the many 2-liter bottles around my desk can attest, we drink way too much of it, even if I work a night job. I’ve given it up before, I’ll survive. I’ll just have to take up Water Joe again when I really want caffeine!

I’ll start there, but how will you challenge yourself this month? Here’s a few ideas from the top of my head:

* Start a positivity journal. Write down something good that’s happened to you every day, to remind you that you are living a life, not just a life with endometriosis.

* Participate in a local endometriosis awareness event. For example, The Great Endo Balloon Race 2013 is a way for endo survivors worldwide to pick a day to hand out yellow balloons to strangers, doctors offices, hospitals — pretty much anywhere — and attach information about endometriosis to it, as much or as little as you like — a definition and a URL of an endo blog or a group like the Endometriosis Research Center, the is a good place to start. They also have tips on more eco-friendly balloon choices and other ideas. Join the group and tell them Endo Sucks! sent you! :D There’s also races, meet-ups, the endo quilt — possibilities abound!

* Get in touch with an endo group. Most countries have endometriosis associations; just check out how many I follow on Twitter or what groups have pages on Facebook, or just Google it! Don’t have one? Consider starting one. Small steps lead to great journeys. The ERC is one; other places to start include the Endometriosis Foundation of America and Endometriosis.org.

* Make a change. Change your exercise routine. Start an exercise routine. Eliminate known food triggers from your diet and see how you feel. Drink more water. Eat less gluten. Again, it’s amazingly up to you. Be sure to give diet changes at least two weeks to judge their efficacy and change one food at a time so you know exactly which food is or isn’t helping.

* Talk it out. Make time for this. Talk to your mom and ask her about her experiences. Talk to your friends and make them know that they need to meet you a little more than halfway when it comes to what you can and can’t do with endo. Talk to your partner and gently explain how you feel and what you need from them when you have an Endo Day. Post to the Endo Sucks! group. Talk to a counselor. Unburdening yourself and educating others is a great way to find support you may never have known was there. Don’t be afraid to ask for what you need!

* Do your research. Did you know many women with endo also have Interstitial Cystitis, and some of your pelvic pain may actually be bladder pain? Did you know the company that makes Mirena is coming out with a smaller IUD called Skyla that is supposed to be better tolerated by women who’ve never had children, and can help with adenomyosis pain? Challenge what you think you know about endometriosis and related conditions, and know that doctors work for YOU — you have the DUTY to ask as many questions as possible and explore every avenue of treatment.

* Ask your job for Intermittent FMLA. This is something I believe every single working woman should do. The Family Medical Leave Act offers Americans specific, paid protections of their job when it comes to surgery, chronic conditions, maternity leave and caring for others — but they may not come out and say “Hey, did you know you can fill out the FMLA form, get Intermittent FMLA, and have your much-needed endo days at home paid 50 percent by FMLA and 50 percent by your paid time off?” My job didn’t. You don’t have to tell them WHY you need an Intermittent FMLA form — just sit down and ask for one. You’ll need your doctor to sign off on it, but it is SO worth it. (A guest blog is coming soon on this topic!)

* Take time for you. Dare to take good care of yourself. Get a massage. Don’t get out of yoga pants all day if you don’t feel like it. Treat yourself to a movie. Learn to make a new favorite meal. DO FOR YOU and don’t take no crap from nobody.

That’s what I can think of for now. Leave me a comment and tell me what YOUR 2013 Endo Challenge will be — and if you have a blog about it, please link to it in the comments!

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In truths that she learned, or in times that he cried

So how do you measure a year?

This is one of everybody’s favorite songs from RENT, “Seasons of Love.” I was and am a giant RENThead and was able to introduce the movie to Phil on Christmas Eve. Not as grand as the stage version, but I’d actually forgotten just how powerful it is. And it always strikes me extra hard that the writer, Jonathan Larson, never even got to see just how far his story would reach into the world: He died of a heart problem the night of RENT’s final dress rehearsal, the result of his until-then-unknown Marfan’s Syndrome.

Here’s the video I meant to post for the New Year (see previous entry as to why it was delayed). I chose this one over one from the movie because it’s more full and is the original Broadway cast (OBC) version. There’s plenty of videos online if you want to see it sung by the actors; it’s moving.

Lyrics:
ALL
Five hundred twenty-five thousand
Six hundred minutes,
Five hundred twenty-five thousand
Moments so dear.
Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life?

How about love?
How about love?
How about love? Measure in love

Seasons of love. Seasons of love

JOANNE
Five hundred twenty-five thousand
Six hundred minutes!
Five hundred twenty-five thousand
Journeys to plan.

Five hundred twenty-five thousand
Six hundred minutes
How do you measure the life
Of a woman or a man?

COLLINS
In truths that she learned,
Or in times that he cried.
In bridges he burned,
Or the way that she died.

ALL
It’s time now to sing out,
Though the story never ends
Let’s celebrate, remember a year in the life of friends
Remember the love!
Remember the love!
Seasons of love!

JOANNE(while ALL sing)
Oh you got to got to
Remember the love!
You know that love is a gift from up above
Share love, give love spread love
Measure measure your life in love.
Seasons of love, seasons of love


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Is anybody out there?

So many times it can feel like we are shouting into an endless, deaf void, one where not even our own voice can return to us. But other times we realize that our shouts are in fact hitting even a few chords. And those chords shake the ones near them, which affects the ones tied to those, and even with small movements we are making a movement.

Which is why I have a love-hate obsession with the stats tab of the WordPress dashboard. Today, for example, this blog was mostly read in the United States. But it also made movements in Canada, Ireland, Hungary, New Zealand and Indonesia. How about that! I love to see where people are reading this blog, and hope that they are getting useful information and connection out of it, especially when so much could be lost in translation.

And in another gift from the universe, I’ve been asked to write a guest blog on another endometriosis site about FMLA and our rights in the workplace. Score! It makes me feel like a welcome member of the community with something valuable to say. And it happens that I am working on getting even more information on this subject right now, so look for that very soon.

Is there anybody out there? Absolutely. Even if you don’t get the echo back or feel the reverberations, your voice is making movements with someone, somewhere.


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Endo Month, Day 16: ‘It’s always darkest before the dawn’

Got home late on Thursday night because I chose to fight the inclination to stay at home on my day off and went out with my mom and her co-worker, Angelique, for a cheap but grand wine tasting evening at a cozy local spot in San Marco called The Grotto. Five dollars for seven wines, not including the cost of the flatbreads and cheeses we ate. I’ll post more about it later today.

It was a definite toss-up on what to feature for my first post today, but in the end it came down to the following: It’s Friday, we need a power song, and I certainly need a power song as I head off to meet with a new doctor whose specialty is apparently endometriosis and is a minimally-invasive surgeon. So please keep me in your thoughts until I come back to you to share them.

I love Florence and the Machine, and this song is pure magic. It’s like soaring. I can feel something deep and dear puff up in my chest and I think of standing with pride and flying when I hear it. And it definitely speaks to what’s in us, calling on us to shake off the weight of the world. As the chorus says, “It’s hard to dance with a devil on your back/So shake him off.”

If I could have this song pumped into my ears when I need it the most, I’d definitely pay for that luxury.

So without further ado, here is “Shake It Out” by Florence and the Machine (lyrics below, some special ones bolded). A strong and beautiful day to you all.

Shake It Out” by Florence and the Machine
Regrets collect like old friends
Here to relive your darkest moments
I can see no way, I can see no way
And all of the ghouls come out to play

And every demon wants his pound of flesh
But I like to keep some things to myself
I like to keep my issues drawn
It’s always darkest before the dawn

And I’ve been a fool and I’ve been blind
I can never leave the past behind
I can see no way, I can see no way
I’m always dragging that horse around

All of his questions, such a mournful sound
Tonight I’m gonna bury that horse in the ground
So I like to keep my issues drawn
But it’s always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah

I am done with my graceless heart
So tonight I’m gonna cut it out and then restart
Cause I like to keep my issues drawn
It’s always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah

And given half the chance would I take any of it back
It’s a final mess but it’s left me so undone
It’s always darkest before the dawn

Oh woah, oh woah…

And I’m damned if I do and I’m damned if I don’t
So here’s to drinks in the dark at the end of my rope
And I’m ready to suffer and I’m ready to hope
It’s a shot in the dark and right at my throat
Cause looking for heaven, for the devil in me
Looking for heaven, for the devil in me
Well what the hell I’m gonna let it happen to me

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah


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Endo Month, Day 13: Life as a Type E personality

I came cross this video of Dr. Tamer Seckin — co-founder of the Endometriosis Foundation of America with Padma Lakshmi, who is also an endo survivor — talking about Type E personality. It’s a short but powerful discussion of how women live their lives with endometriosis pain. And while having endo doesn’t always equate pain, nor does lots of endo equal lots of pain, he talks about the mask and strength we don to get through our day — a pride without vanity that weighs heavy on our shoulders until we just can’t take it any more.

Click below to watch the video

That’s right, click here!

To quote Dr. Seckin:

“I have come to convince myself there is a Type E — Endometriosis — personality. Here is why: I have been treating women in New York City from all origins. They are high achievers — PhDs, lawyers. They would not accept any sign of pain on their faces; they won’t show it to you. … These women — pain they can suffer, but they cannot show their pain. For years they live the same thing over and over, every month. However one day comes, they close the door, they sit in front of you and say ‘I can’t take it any more. I need something to be done.’ …”

He goes on to say that there is no cure but, with good surgery, even women who have tried everything — many doctors, birth control, diet, nutrition, exercise, acupuncture, etc. — can find relief, even if it’s only for a while, and that when endo returns, just knowing what it is and what they can do makes them better prepared to deal with it.

I am definitely a Type E. I won’t tell you I’m in pain unless I have to. Too many days have been spent at work with a heating pad strapped around me, lips and hands numb from codeine, because I must persevere. To do anything else is an admission of defeat.

Then a horrific day will hit me, or my mind and emotions give way for a while, and the whole damn thing collapses. It does nothing for our self-esteem, or our state of health — mental or physical.

Are you a Type E?


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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.

AND SO DO YOU.


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Endo Month, Day 10: Yoga for endometriosis

Today’s post is a little late, but I do have a fine excuse: I spent almost the entirety of Friday enjoying quality time with my boyfriend. And when I say “quality time”, I mean “hours playing Dead Island, beheading zombies and eating pizza on the couch.” Which meant a late wake-up time today, and I had to be in early to a short-staffed workday with early deadlines thanks to the time change. Big fun.

But now that is behind me and I can introduce you to a site I recently found called YogaYin. On this site, yoga teacher Alannah describes her practice on focusing on women’s health and fertility, which takes on more weight when you consider she has severe endometriosis herself.

We’ve all been told that exercise helps manage endometriosis, adenomyosis and other pain, but when you are feeling like shit just walking from bed to bathroom it can be hard to muster up the will to go jogging or get to a gym. But I can say that, except for one truly brutal day, I always felt great and was really able to push through my belly dancing classes, just like when I was a competitive cheerleader. And my hips felt so loose and everything felt fluid rather than tight and twisting which was a great benefit.

So I present to you Alannah’s videos on Yoga for Endometriosis. I encourage you to check out her site, and definitely check out this video. Yoga is a gentle but effective exercise tool, all the more accessible for endo, adeno and PCOS women. Here is part one for endometriosis and flexible hips; you can find part two on her site and on YouTube. Let me know what you think!