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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A new look: I know, it’s about time

Let me know what you think of the new look of the Endo Sucks! blog in the comments below!

Hopefully the change in theme will eliminate some of the problems people had with image sizes, but if you have any problems, please be sure to comment on the post in question.

Thanks for sticking with us since 2008 and our old format — which, I have found, isn’t even a theme offered by WordPress any more. Talk about vintage.

x – Chanel


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Need another reason to stand up and #educateDrDrew ?

Oh, if you insist.

I have seen this several places tonight. Here is an entry from Grass Fed Girl – her report, and her educational story.

Click the photo or this web address: http://www.grassfedgirl.com/dr-drew-hassles-jennifer-esposito-about-her-celiac-disease/

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This is what you call “not helping your case”

Some interesting screengrabs of Tweets from Drew Pinsky, his wife Susan, and the ditch they are digging themselves into more and more today with terrible handling of Pinsky’s misguided (at best) comments about endometriosis and IC during the Loveline show on Thursday night.

Apparently the situation at hand may be discussed on his show on Monday, April 28. We shall see. Even if it is, Susan Pinsky makes it sound like we’re in for another shit sandwich.

To follow what’s going on, you don’t even need to have a Twitter account. Mine is twitter.com/endosucks (or @endosucks if you do have an account). Drew Pinsky is @drdrew, @loveline and @drdrewHLN (yes, he’s on CNN too), though he does also have others (like for the podcast). Susan Pinsky is @firstladyoflove.

If you want to respond, tweet at these accounts, and/or use the trending term #educatedrdrew.

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And then this treasure happened. Why would Dr. Drew love something sent out by a dietician who specifically deals with IC, a disease he believes has no genuine pathology? HMMMM. My response is below; for some reason, it isn’t showing up on his feed any more.

Patriarchy like whoa.

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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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Confessions of a Health Activism Blogger

endosucks:

A good read! We are and must be our own best advocates!

Originally posted on Do I Look Sick?:

You know, for as much of my life as I’ve devoted to health activism and being open about invisible illness, I am still nowhere near where I want to be as an activist for myself. I’m really happy that I’ve helped so many people stand up and speak out for themselves and that I’ve brought a little bit of light to issues that are still very much in the dark. But every now and then I can’t help but let my own shortcomings get me down.

I thought I might feel a bit better if I got some of this off my chest, so I’m coming clean with you. These are my confessions. As always with “downer” subject matter, I’ll keep the mood light with gifs and memes.

Confession #1: I am still not open about my health with my parents.

Yes, my own flesh and blood. The people…

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