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


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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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Endo Month waits for nothing!

Just because I’m on vacation doesn’t mean I forgot tomorrow is March 1 … which means endometriosis awareness month is here again! All month long, I want to see your yellow shirts, your yellow ribbons, your contributions for the 2013 Endo Month Challenge. Go to endosucks.wordpress.com for more information & email your photos to endosucks@gmail.com. You can also tweet it: @endosucks, hashtags #endosucks and #endomonth.

Keep your heads up, and go yellow!


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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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Some winning, some questions and an infertility contest

I recently entered a contest sponsored by Clear Passage Physical Therapy in central Florida. The contest, held wholly on Facebook, awarded physical therapy packages to women with the most votes on a photo of themselves submitted to Clear Passage’s FB page. While I didn’t win (how the No. 1 spot nabbed 700+ votes, I’ll never know), I was in the top 10 and a book is en route to me as I speak. Plus I found a bunch of new people with my same experiences and have a physical therapy center to try! Apparently they offer treatments for everything: endometriosis, infertility, pelvic floor disorders, IC, migraines, chronic pain, and more … you know, all the stuff I have. Though it’s a good 2-hour drive from where I am, I am looking forward to trying it!

This month, Clear Passage is sponsoring another contest for infertility treatments. You can find out more on their website. I am wondering if I should enter? The contest, Share Hope, wants you to tweet your infertility story to try and win a book or 20 hours of free physical therapy for infertility. Apparently people travel from across the country and the world to visit these clinics: there’s on in Gainesville, FL; Irvine, CA; and a clinic will open in Washington D.C. this summer.

So what do you think: Should I enter? Will you be entering? Let me know in the comments section.

Click the banner below for more info from Share Hope, which offers support from experts and authors in women’s health, such as the awesome Dr. Christiane Northrup.


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Day 31: Tie a yellow ribbon

three important ribbons

That went fast. Anybody else think that went fast?

Online and in person, Endo Month was pretty darn successful for Endo Sucks! People around the globe made the promise to wear yellow in support of women living with endometriosis, and with the number of people joining the Facebook group (largely invited by their friends), I have serious hopes for the Web site once it it launched. Also, people in Jacksonville have said they’re interested in a support group, so I look forward to getting that rolling.

Today I sent off March with a bright yellow shirt despite the rainy day. Unfortunately, there was a hole in the shirt over my left breast — small enough to escape my notice until it was too late, large enough to attract everyone else’s attention. I thankfully had a black cardigan with me (with a yellow ribbon) so I put that on at work, but had to keep pulling it over my front. I looked like a bumblebee.

As we come into April, we come into another important awareness month for me and too many that I know: sexual assault and sexual violence. I thought I was going to be able to do a benefit this month but with doula training and the time and stress from work and getting through March, I don’t think I can. I will still make my gift to RAINN, and I hope you will too!

The ribbons on this page are important ones for many different groups, but here, they are representatives of endometriosis (yellow), PCOS and rape (teal) and infertility/miscarriage awareness and support (pink and blue). Take them, display them, find your own, or heck, look at the list of colors and representations online. It’s unbelievable! (FYI – May is Celiac month!)

Despite the weirdness and not perfect events of the day, despite the mild pain today and the fear of an impending moon, I am hopeful and happy that maybe I am helping others in this world, and that I have a long life of service ahead.

Thanks again, everybody — Happy April!

–Chanel–


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Day 14: Fear, Part 1

I’ve already said that endometriosis has cost me a relationship. In reality, it was one of the factors, though I don’t think the primary one (at least, I hope not).

Here’s the facts: I want to live pain-free, I am willing and able to have a hysterectomy, but I also have a stubborn streak the size of Guam and refuse to accept that being pregnant — something that comes so easily and unexpectedly for so many people I know, and to people who should never have the right to be parents — could not be for me. Someone says I can’t do something, I stick out my chin and say, “Watch me.” Already deemed a high-risk pregnancy candidate, it is this attitude that my mother fears will kill me if I fall into a worst-case gestation.

And above all else, I refuse to wait forever to be a parent. I always assumed I’d be a young mom — not 19 young, but not 35 young either. That’s my choice, to not wait ’til my mid-30s to be a parent. Part of it is fueled by how I feel about myself and my daily life. I am tired, always tired. I’m ready for this ridiculous uterine adventure to be through, even though I’m feeling better than I used to. And at the time of the aforementioned discussion, I was against having a surrogate, though I have changed my mind since then.

But for sure, the possibility — probability — of having a family sooner rather than later that helped to change his mind about me.

“You need kids sooner rather than later,” he said, “and if it were up to me, I’d have kids at 40.”
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