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


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A staff meeting of bizarre levels, or The squeaky wheel gets the cold hard cash

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We just had a meeting with some of the upper brass about our revenue and numbers, which aren’t terrible. There was the usual spread of cookies, cupcakes and rugelach from Publix, and the added thrill of everyone receiving a blue ticket for a cash raffle after the meeting. When a reporter took the necessary step of asking if we’d ever see raises again, our President of Something Important began a long explanation which, after about seven words, you already know is too many to be a “yes.” So that hope is dashed for another quarter.

BUT IT GETS BETTER.

The raffle. Oh, that raffle. I have terrible luck with these things so I didn’t expect a prize. What I could not have expected is not only would the newsroom clean up — a coworker that left and came back as a part-timer won for the second time (the first was in December), a sports desker and a new reporter and wire chief took home some serious cash money (between $200 and $500 each) — but my raffle number was 620. Phil, sitting on my right, was 619 and won $100. Robert, sitting on my left, had a completely odd number series and won $100. The woman two rows ahead of us was 621 and she won $200. Even when they drew a few cash cards based on random employee ID numbers, I did not win. I was a little steamed as we walked out, having literally been surrounded by cash winners while we’re on deadline. So as we’re walking out, The President of Something Newsy — who was also the day’s gift-giver — was shaking hands and thanking people for coming. I shook his hand, and before I knew it, I was telling him “I had some bullshit luck today, and here is why.” (Yes, I used those words.) And I pointed out Phil, Scott, Andrew, Robert, the lady with No. 621. I was just expecting to get a laugh. Instead, this member of the Upper Brass pulled cash out of his pocket and tried to hand me a $20 bill as a consolation prize. I threw my hands up, being surprised and scared to take money from him. Ultimately he talked me into it, agreeing that I’d had some seriously crap luck today and I’d earned it. And I walked out of there with $20 that I feel weird about but now can’t return.

Now I’m working on a locator map for a new Greyhound station that will be my second graphic in print for this newspaper this weekend. Not bad, considering I only started official graphics training on Tuesday. However, I’ve been walking stiffly and hunched over the last few hours, my heating pad scalding the crap out of me, as I start on day one of a brand new birth control that I’ve been reminding my gyno about for over a week (and going without in the meantime). At least it was free. Thanks, Obama! Please find a way to make my uterus behave.

So what did you do at work today?


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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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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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Endo Month, Day No. 6: Stabilize This

My OB/GYN and I met in January to talk about the continuing weirdness that is my cycle. I’ve had some odd changes since my surgery in 2010, including PMS like I literally have never had before (including serious irritability) and shorter, still irregular cycles. She seems to feel my remaining ovary may be struggling since the oophorectomy, and that I need to go back to the reproductive specialist to check my hormones again, and for more Clomid or stronger tests. (Happy new year!)

But beyond needing to go back for fertility tests, it came down to two management options: try a new birth control and try to tame the symptoms, or be prescribed a mood stabilizer so I wouldn’t care as much during my period.

Wait a minute. My options are pill, or … pill?

Choose carefully. But both will eff you up.

I wasn’t keen on adding another medication to my list, so I opted for Lo-LoEstrin Fe, the tiniest of the minipills available to date, even though taking progestin-only pills never helped me before.

It strikes me as odd that those would be the only options, or that a mood stabilizer would even be offered in an “either or” situation. She didn’t name any potential medications and I haven’t taken time to look them up.

I’m working on my third month on the birth control so I’m waiting to fully judge it until I’ve finished the 3-month trial, but it hasn’t really affected me yet so I’m not expecting any miracles. On the plus side, I’m not throwing up all the time, so there’s always a silver lining.

For some reason it kinda pissed me off that the mood stabilizer would even be offered. (Maybe that means I should have taken it.) You really have no more options for me, Medicine? It’s come down to just trying to keep me from bitching about how bad I feel as a management technique?

But perhaps I’m reading too much into this. What say you, Internets? Have you taken mood stabilizers, or would you?


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Day 30: Estrogen doesn’t help anything

Finally getting some energy back … thankfully! However, that doesn’t prevent the weird sleep schedule. That’s going to be a beast to get rid of, as 4 a.m. has become the new bedtime. And one of my crazy neighbors has a rooster that crows around that time, which has me totally boggled as well as slightly irritated. He’s become my 4 a.m. alarm.

Talked with Amazing PCOS Doctor (APD) last week about my crazy terrible moon, finally. He seemed rather concerned about how bad it had been but there wasn’t much to do as far as changing the pill cycle because the moon had just ended. The headaches are also bothersome. He’s attempting to counteract that with putting me on low-dose estrogen instead of my placebo pills, since the combination pill I’m on now is actually not doing me any harm. I haven’t realized it til now, but I haven’t been throwing up. Or totally crazy. Or depressed. Hot damn. This might work!

Except, of course, for the heavy, crippling periods and increased migraines.

Which leads to another thought … anybody on Microgestin ever have difficulty sleeping?

This would of course be perfectly timed with having to drive across the state for required doula certification this week. I start the estrogen on Wednesday and have to drive 3 hours after leaving work around 9 on Thursday night. Apparently I have to space out when I take codeine and the estrogen by three hours, but the pharmacy didn’t say why. This should be interesting.


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Day 20: Surprise!

Don’t you love surprises?

Pool Shark or Monthly Curse? I'll take Pool Shark.

Nah, me neither.

Today was my first day off of a three day weekend, but I had plenty to do. I’ve been feeling slightly off — headaches, sore chest, pelvic pain, other issues — but I can chalk all those up to a new birth control, change of seasons and stress, what with the rough week behind me, including a big pay cut for all the company’s employees and having a bad “relationship talk” and planning for my upcoming doula workshop. Plus, with Walk for Freedom on Sunday and me trying to sell the shirts (you want one?), naturally I’m stressed.

But today seemed an OK day. I did a great job at urban ballet on Thurdsay night and can really feel the difference as my body quickly returns to some form of fitness. I spent the day with my client and friend J, whose baby I will help deliver in August, as well as her boyfriend, Se, and her two beautiful, funny sons. After lunch at an Indian buffet (the little ones love that palak paneer), we carpooled to St. Augustine to visit her midwife (a doula’s role is to support, after all, and I can use all the contacts I can get) and spent most of the day in a welcoming home, talking babies and ordering raspberry leaves in bulk for comfort tea and watching J’s BF and the midwife’s husband perform an impromptu drum circle while the boys, ages 6 and 3, danced and drummed and the midwife’s young daughter, 8 months, bounced feverishly and nommed my fingers.

But on the way home, I started feeling a twisting cramp that came and went suddenly. J noticed; I just told her I was having a bad day. She understands and supports me; so does her BF. But it was one of those pains where it erases any other intention you have and you feel suddenly and solidly justified in canceling all your plans to go home and curl up like a pill bug. But J and I also take a belly dancing class at one of the local universities and both missed last week’s class, so as soon as we got me back to my car, I went straight to the university to get changed and ready for class while J and company got themselves sorted.

I should have known something was up when I called four people in rapid succession because I somehow couldn’t remember how to get to the university from where I was and left increasingly panicked/angry messages for all my friends. (I got there perfectly, without directions, and half an hour early.) And when I went to the bathroom to change into my dance clothes … SURPRISE! My period.

“Irrational fury” is the only way I can describe my reaction. Thankfully I was alone in the ladies room, but I found myself having to use an o.b. because I was caught off guard and didn’t have my Diva Cup. I’ll talk more about o.b. vs. Diva Cup in another post. But of course I was surprised — I only ended my moon 12 days ago, putting me on a 20-day cycle when I’m used to at least 30 these days!

Hurting, shocked and hating my body, I really threw myself into the class. I felt so good after the first class; at the start of this one, I could barely stand up, so this one didn’t have the same effect. However, I was really “angry zen” about it, so I excelled at the routines and am pleased to be getting some of my previous talent back.

Sigh. If nothing else, at least this explains why it physically hurt too much to do some of the abdominal exercises at ballet on Thursday and why I’ve been feeling so rotten lately. But did it have to happen the same weekend as I’m leading a charity walk?!