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


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Pro tip: What not to drink for your ultrasound prep

So I chugged this 33.8 fl oz bottle of caffeinated water (my beloved Water Joe) to be ready and “full” for ultrasound. Wait an hour past my appointment. First thing the tech says when I get called back: “Use the bathroom and empty your bladder. The internal pictures were much better last time so I’m just going to do those.”

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All that delightful Water Joe for nothing, on an empty stomach. That’s 120mg of caffeine, equal to two cups of coffee, or two espresso shots. It doesn’t sound *so* bad, but my thumb is shaking as I tap out this post. I can feel my eyes are HUGE, almost pie-eyed, and there’s an odd pressure in my head. Oddly, I do not feel any more awake. In fact, I’ve been yawning through my heart flutters.

I do still have to pee.

DEAR GOD I’VE MADE A TERRIBLE MISTAKE

Live and learn … At least the good news today is that my 3.6cm cyst is now 2.5, so no cyst removal for me!

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The garbage bag dismissal of Dr. Drew Pinsky (or, why can’t ‘celebrity doctors’ just get a grip?)

These “celeb doctors” are at it again. (Link to video at the bottom of this post.)

On Loveline last night with Dr. Drew Pinsky, a man from Florida called in presumably with a question about his fiancee. He states that his fiancee has endometriosis, IC, lactose intolerance and stomach issues and, before he can really even ask a question, he is interrupted by Drew and Crew with the following statements, which are both disgusting and damaging:

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“These are what we call sort of functional disorders. Everything you mentioned, everything you mentioned, are things that actually aren’t discernibly pathological. They’re sort of — they’re what we call ‘garbage bag disorders,’ when you can’t think of anything else, you go ‘eh, well it’s that.’ So it then makes me question why is she so somatically preoccupied that she’s visiting doctors all the time with pains and urinary symptoms and pelvic symptoms, and then that makes me wonder, was she sexually abused growing up?” The caller goes on to say that his fiancee received these diagnoses before they were together, and Drew takes this smug, laughing tone, and tells the caller “TRUST ME, she saw *lots* of doctors before you were together in order to get those diagnoses. So, was she sexually abused growing up?” (Turns out she was.) Drew is gleeful, his staff laughs. “It only took 16 minutes” to get this “proper” diagnosis from Pinsky, states a female member of his crew. Drew presses on and insists that “unexplained pelvic pain” is often associated with sexual abuse because that’s the only way the body “can tell its tale of woe.” He then tells the called his fiancee “really needs to see a trauma specialist, and not a urologist. So really work on that.” The end the call without actually hearing a question or issue from the caller. Mike then proceeds to joke that another way a person can have unexplained pelvic pain is by having sex with [that evening’s guest] Alan Thicke.

All this happens in a matter of less than three minutes. He doesn’t even know why the Florida man called in; no question is asked, just background on his fiancee. LESS THAN THREE MINUTES. That’s all it takes for a radio show doctor to plant seeds of doubt in the mind of a fiancee, to dismiss a woman who has suffered and is about to now question herself and her mental health, and to reinforce the horrific, damaging ideas that anything causing pain in women comes down to being preoccupied with being sick and as a result of sexual violence. And these statements will stick, because Drew Pinsky makes himself known and visible and somehow “trustworthy.”

So much for “do no harm.”

I don’t deny that sexual violence causes damage to body and mind. I don’t disagree that she could benefit from seeing a specific counselor. I don’t even deny that some people really are preoccupied with being sick, and that is its own disorder.

But I began suffering with endo at age 10, before any sexual violence in my life. Can you tell me that a child just entering puberty has a preoccupation with being sick, Drew Pinsky? Really? What is your quick-hit radio doctor opinion on why, at age 12, I would be incapacitated during my period, to the point of fainting from pain, blood loss, clots? And can you explain the burns and lesions and adhesions our doctors took pictures of when they were inside our pelvis, trying to cut our organs apart from each other, trying to save our intestines and our fertility and give us a better quality of life for, at best, six months? Have you been hiding in our corners all this time, knowingly watching as pain meds fail and fertility treatments fail and birth controls can’t bring our monthlies (or daily pains) to heel?

OF COURSE YOU WEREN’T. Because you are not our doctor. You are not the doctor(s) of the fiancee you were so quick to judge and toss aside. You are not a women’s pain specialist or an expert in endo, adeno, IC or PCOS. You haven’t seen it or lived it.

We have. Millions and millions of us.

We have seen our photos and videos from surgery. They’re out there on YouTube if you haven’t. We have been to doctor after doctor — yes, including therapists — and suffered the consequences every day of being in pain and trying to function. Being in so much pain that even yoga pants hurt to the touch. Missing work and school because we can’t get out of the fetal position and if we do, blood is rushing down our legs. Missing sex. Miscarrying. Having very real complications, like endometriomas (which cause my right ovary to explode), and GI inflammation. Endometriosis and interstitial cystitis both have very real, tangible, observable pathologies. Just because Drew Pinsky doesn’t have experience with it doesn’t mean it is a “garbage bag” diagnosis. And since you don’t know what you’re talking about, Dr. Drew, maybe you should just shut up before you do more harm than you already have.

And I say, tell him so. Tell him now. On Twitter (@drdrew and @loveline). On his Facebook page. In your local newspapers and on blogs and the news.

I’m about to post to his page, and Twitter. Please do the same and tweet at me too when you do. (@endosucks) I’ve already posted in the Endo Sucks! Facebook group, on.fb.me/endosucks.

We deserve so much better.

Here is the link to the page and video; it begins at 30 minutes in. http://www.lovelineshow.com/b/Loveline-Live-w/-Alan-Thicke-04/24/2014/820367087189488288.html#commentsection


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Update on the little man

This is a follow-up to a post I made recently, detailing some health issues with my dog, Pippin.

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On one recent Sunday, I took Pippin to work. He’s the best in the biz.

Long story short: NO SURGERY FOR THE SMALL DOG! The ultrasound shows a nodule on his pancreas, and some of his organs were a bit enlarged, but there’s no cancer, no foreign object stuck in his gut, and absolutely no need for surgery, as the first vet had pressed so firmly into my brain.

Basically, his big tummy was full of air and food that was fermenting, which was the culprit in his gastro issues. He’s a small dog that’s getting older and the high-fiber vet food just wasn’t right for him. I put him on soft food of a different brand for a bit, but when that didn’t stop the gastrointestinal distress, we put him on the tried-and-true diet for doggy diarrhea: chicken and rice. He’s been eating it since with only one short-lived gastro issue over the weekend when we relented and gave him a bite of egg white.

No more panting all night like a cow in labor. No more shitting himself. No more tear-inducing farts that wake us up out of a dead sleep in the middle of the night.

My dog did not have cancer. My dog had to take a shit and change his diet. THANKS, VET NO. 1, FOR THE PANIC. I guess doctors of all shades can be total dipshits.

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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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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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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