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


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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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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 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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Pain in body and mind

It’s true I’ve been gone a little while.

In the last month, I’ve had a nerve conduction test and more MRIs to check for nerve damage and update my doctor and my understanding of the status of my Chiari malformation. I’ve worked on posts and saved them, complete with photos.

I wanted to tell you all about how I sucked up my pride and messaged a local infertility center, hoping to be seen and find out how my Last Ovary Standing is holding up these days.

I wanted to post photos from Hanukkah, Christmas and New Year’s Eve that were inspirational or at least a “hello” to you all.

Instead, my status as of midnight NYE — what I always considered the most romantic night of the year — brought a very painful end to my 3 year relationship with my boyfriend, the best endo supporter I could have asked for. We lived together for nearly the entirety of our partnership, and now, moving out … I mean, holy shit, how do you dismantle a life? It would be easier if we hated each other; we don’t. We care deeply for each other and had plans for a future. The only thing I’m happy about is that he’s going to seek out what he needs and that I helped open the lines of communication between him and his family in the process.

Not that it makes a difference to the pain of separation. It doesn’t matter if you knew it was coming for months or it caught you by surprise, it’s not fun and it’s not easy.

Right now I’m staying at mom’s house, crying often, hiding in bed not eating (and eating femme stereotype foods like Ben & Jerry’s Phish Food ice cream when I do) and watching movies — favorites like “The Princess Bride” and “Alien.” And according to my Woman Pro Calendar app, I should have started menses on Thursday. I’ve had lots of signs (mostly cramps and pelvic ache and acne) but no Aunt Flo. This is not too surprising as stress will override everything, including your birth control, but it provides me no comfort, having the symptoms but no manifestation.

So if I disappoint with the updates in the New Year, I apologize. We all fight battles. Some are fought with a sword. Others are managed with a heating pad. And still others by letting yourself just be sad for a while.

Here’s to 2013 only getting better from here, every single day.


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Hello, lovers. Yes, it has been a little while since I have been here. I’ll be filling in the adventures and misadventures as we go.

But today poses a particular problem that I know is not unique to me:

Do I stay home or not stay home?

I took the day off for the post-wedding BBQ of a lady I have known since the third grade. We’ve been out of touch over the last year and a half, except for her text about getting engaged and receiving the invite, and any visits she’s planned to my town have been canceled at the last minute. Our job schedules have kept me from taking off time to go down there when she isn’t working. Her wedding was private and held yesterday; today is a casual event by the beach.

Yesterday I was home, on the couch with a heating pad and codeine just from the threat of my impending menses. Today it has arrived and my internal organs are wringing themselves out like a soaked Libman mop.

Suffice to say, two hours each way to an event where I only know the bride and groom is *not* sounding like what all the cool endometriosis is doing today.

So the boyfriend and I are torn between going to show our love & support, and staying here since I’m worse today and not looking forward to being crampy and cooped up.

The biggest motivator? It’s not necessarily the long-standing friendship; she doesn’t seem all that bothered if I don’t show up (I texted her last week to double check the date and she responded “if it’s too far, you don’t have to come”). It’s that I don’t want to feel like I’m missing out AGAIN.

I missed my college friends’ nuptials in May because of a lung infection. I missed the wedding of a 16-year friend because of last-minute training for my job that never even happened. Am I really going to skip even this because of endo?

Is it prideful to go, or prudent? Is it smarter to stay home or suck it up?

Along with “Why me?”, this is the eternal dilemma of the chronic pain patient: Do I stay or do I go.

Neither is a winner.

*AMENDMENT: After further review and discussion, we found that the drive to the venue is 3.5 hours each way. No, just not possible. Endometriosis, serial killer of joy.*


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Taking Endo Sucks! around the world

One of the coolest features about WordPress is the stats page, where it tells you how many view you’ve had, what the most popular postings are, etc., but the best one ever has recently been added: A map that shows you where in the world your readers are. And not in a creepy Google-Earth-caught-me-mowing-my-yard-on-street-view way. It’s a holy-hell-i’m-really-reaching-people way.

Some of the countries that have shown up on my map for the last seven days, besides the U.S.:
* United Kingdom
* Canada
* Puerto Rico
* Malta
* South Africa
* Japan
* Brazil
* Saudi Arabia
* Sweden
* Barbados
* Colombia

Are you kidding me? People in Malta and Barbados stumbled on my blog? How freaking great is that!

If you are here and want to rep your country (including you, my fellow Americans), by all means leave a comment and tell me how you got here. Even if you don’t follow this blog (and you should totally subscribe and follow me). Even if you got here on accident. I am so glad to have you here. Yes, YOU. Please visit again and let me know about you. Because I want MORE. I want lots of people reading in dozens of countries, and I want you to tell me how to get there.

Side note: This also lets me know who *isn’t* reading the blog, and since I have a considerable number of friends scattered around the world — Germany, India, New Zealand, Bermuda, the Bahamas, etc. — this means I know you’re not dropping by the blog. FOR SHAME. Technology being used for both information and punishment; you gotta love it!