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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Guilt over not participating in my own life (or at least Star Wars Weekend)

Can I just vent for a minute?

I am really getting down and sick of how unpredictable and uncontrolled my endo and adeno pain is. I am trying to live any sort of social life but end up just going to work, surviving, going home to sleep, and repeat. And I’m getting upset over ridiculous things. Tomorrow, for example, I have been dying to go to Star Wars Weekend at Disney in Orlando, especially since this is the last weekend of the year and Mark Hamill and Billy Dee Williams will be there. I have been talking it up and getting excited. Today, I wake up and I am beyond thrashed. Well, I say wake up, but I really mean “have several short naps from 3 a.m. to 2 p.m. and finally pour myself out of bed and stumble around the house like a zombie.” Hell, I’m still in pajamas right now! I haven’t even taken anything for pain, even though I’d like to! I am trying to work myself up to go out to have dinner at 7, I can hardly fathom getting on the road at 7 a.m. to spend the day in the heat in Orlando and drive back that night. And what about my pain management? I am back to rationing my meds each day, and the codeine I’m sorry to say is not really effective. It’s a difficult admission. So I have people here and in Orlando that know I *might* come, but I might not, and it affects not just me because there’s getting the dog cared for, and making sure I have clothes I can actually wear through the day, and staying comfortable. I just don’t know. I’m exhausted at the very thought. Another opportunity for fun, probably down the drain. Another year of planning to go, gone.

The pose on this statue by Rodin just cries Shame to me. Image found via Google Creative Commons.

Statue by Rodin, image found via Google Creative Commons.

I already had to decline the wedding invitation of a friend I’ve known for 20 years because I’d be in Chicagoland alone, and with as weird as my pain has been, I can’t risk being stuck in a hotel room or banquet hall and not able to get around, or not be able to wear pants, or swell up to pregnancy size. Or worse, being in total incoherent pain and not able to care for myself, or get back to my hotel, or having to explain myself to someone there, spending the money and not being able to go or drive safely, and and and … I just can’t risk it.

I know I get stuck in this cycle of making decisions based in a place of fear. But I feel like I’ve done a hell of a lot pushing through my pain, especially college and beyond. Now I feel like it is catching up to me. And I feel such extreme guilt over not being able to do participate in my own life. It can’t be healthy.

These aren’t the first events I’ve had to sacrifice in the name of endometriosis. I guess they won’t be the last. And that is infuriatingly sad.

I wish very much that I could just make decisions and go and do and not have a million “ifs” and items to tick off the list. Isn’t that what normal people do? They get to go and do things and not have their pain sitting on their shoulder (or anywhere else, for that matter), guiding their life experience? I can’t be the only one who feels like this.

Maybe I’m finally getting to a point of making that Very Difficult Decision.


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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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The battle for the orange bottle continues

English: This is a picture of a Walgreens pres...

This is a picture of a Walgreens prescription bottle. It is not mine. Personal information about the patient is censored. (Photo credit: Wikipedia commons)

If it’s not one thing, it’s another!Ladies and gents, always remember that YOU are your own best advocate and you must be diligent when it comes to your health care. I called Walgreens’ automated service this evening to check the status of my refill orders. I’m glad I did before I got there, because I was surprised/pissed to find they were trying to charge me $160 for FOUR (1-2-3-4) Relpax pills for migraine. Thankfully the fix came easy this time: I called the pharmacy and found that, for some bizarre reason, they had run it through some random coupon program and not my insurance, causing it to be rejected. But I was assured that it will be its usual $10 when I pick it up tonight.

Sadly, this is not the first time for me or for any of you, and it will not be the last. While I know Walgreens staff are humans too, I can’t tell you how many times I’ve had to fix something with them. They fill the wrong med even though I use the automated system and enter the prescription number myself. They don’t send refill requests. They give me someone else’s medicine and give mine away. They’ve asked me out loud, in front of other customers, why I’m taking birth control. And they frequently run medications incorrectly so that insurance at first doesn’t cover it until I tell them, ask them, fight them, beg them to re-run it.

Not that  insurance is innocent: They’ve put up more than a few fusses and tried to charge more or refuse coverage on different medications, but will pull back and charge the co-pay amount when I’ve pushed back. You never accept a first offer, and you must never be afraid to push back for what you need or when you know something is not right — and even if you don’t know for sure, you ask, question, verify. Don’t just trust that everyone is doing their job to a T; make sure of it.

Your time, money and health are yours, and they are precious. Live it and love 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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Greetings from migraineland

Hi everyone! It’s been very exciting to see the blog numbers go up recently. Thank you all for being here!

We’ve had a new work schedule implemented at my “day job” and while I’ve started several posts

and saved them as drafts, things have been so wacky on the desk that I’ve been unable to complete them. I would have turned to them after hours but Phil had terrible food poisoning so I spent a few nights at his place trying to keep him from dying (very dramatic). I left work early tonight but alas, it is because of a migraine — pouring rain today destroyed my brain, and the menses mind doesn’t help either. I figure once you’ve got sunglasses on at night in the office and it feels like tiny Uma Thurman is recreating “Showdown at House of Blue Leaves” in your head and the back of your eyes are getting stabbed, it’s probably best to call it a night.

If you know what comes next, you know how crappy I feel. Shit gets real, son. (GIF found via Google, creative commons)

But rest assured there are several posts coming your way. Among the topics: the very-long-awaited Mirena IUD follow-up, different endo realities, seeing a new doctor, baby dreams, and — spoiler alert! — poop.

See you real soon. Follow the blog to get notifications as the new posts go up!


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Ups, downs and the timing of the universe

The universe giveth, the universe taketh away and says “No no no, not in my house!”

After weeping my way through four hours Friday of trying on dresses (and walking away empty-handed) for an Easter brunch that ended up canceled by Saturday morning, my uncle shows up with a big basket of Jacksonville delight: Peterbrooke chocolates.

So much chocolate ... plus a yellow stuffed bunny. Mom gave up her white chocolate rabbit; her loss!

So much chocolate … plus a yellow stuffed bunny. Mom gave up her white chocolate rabbit; her loss!

Oh my. Among the bounty: chocolate covered potato chips; white chocolate covered Oreos; chocolate dipped pretzels; and of course, Peeps. In chocolate. Peterbrooke is the best. I always give their chocolate covered popcorn as gifts and — wait, why no chocolate covered popcorn in there?! Party foul, Peterbrooke, but know you are so easily forgiven.

This was the most amazing timing, as my Aunt had decided to come to visit about an hour before this basket arrived. You know, my favorite Aunt — and yours — Aunt Flo.

This is the first time the universe has ever sent me a gift basket. Never mind the whole chocolate-period cliche, I’ll take it. Hopefully I can eat some of it once I stop feeling nauseous. Stupid endo.

To complicate things, my mom and I just ordered a delightful set of meals from Jacksonville’s beloved Metro Diner as our Easter brunch and dinner (I still have to go to work, unfortunately). We’re talking poundcake french toast, bacon, lox & bagel, and the best grilled cheese on sourdough ever. EVER.

But as I was getting ready to go with her, my body decided that kick-in-the-head migraine you woke up with isn’t enough. No, the universe punched me in the gut, made me throw up all the water in my stomach, and I think it may have stolen my credit card.

My mom came running in all panicked but I’m sorry, this is what goes with the territory — not always, just when you need it least.

She went to get the food alone. Sorry, mom.

Off to wash colored dishes for the Easterland patio. I’ll post pictures later. My mom did a great job out there.

A merry pagan ova day to you all! Hoping for the ripping pains in my gut will subside and all will be well.