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


63 Comments

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:

Image

“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


Leave a comment

Updated: Another way to show your supportive yellow!

I’ve just started using PicBadge to try and not only mark/protect my photographs, but also to easily tag photos for Endometriosis Awareness Month. I think this will be a great visual effort and reminder for people adding this to Facebook and elsewhere, and will hopefully continue to bring attention to and questions about endometriosis as a result.

I updated my 2012 endo portrait with the ribbon, and here is the result. You can position the ribbon anywhere on the photo you like. Let me know if you guys have issues with adding the ribbon and I’ll do my best to fix it!

Here’s the link for the Endo Sucks! PicBadge page. Go forth and add ribbons! :: http://www.picbadges.com/endo-sucks/3085495/#

Image


Leave a comment

I put Endo Sucks! in a D.C. landmark.

At Ben’s Chili Bowl, the bathrooms have chalkboard on the walls and chalk at the ready.

So of course I made sure I left a mark that wasn’t my name & the date.

image

Hopefully even one person will see it and check us out!

What are you guys doing for Endo Month?

 


Leave a comment

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!


5 Comments

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!


1 Comment

I CHALLENGE YOU!

Let me just put a little disclaimer out there: When it comes to managing our health, we are all on the same team. Everybody has different ways of handling the physical and emotional aspects of endometriosis, PCOS, adenomyosis, infertility and beyond. You might feel how one person is managing their endo is radically outrageous, or you might be simply offended by hearing someone speak at length about an issue that gets them excited. But nobody is forcing you to change anything, and if hearing new information upsets you, walk away. It’s not a challenge. It’s honesty.

Just a friendly reminder that only spirited discourse will be welcome here. No snide comments, no fighting.

Of course if that were the case everywhere, we wouldn’t be having a raging national political war about how women handle their bodies. But that’s almost not relevant here. ::sarcasm::


Leave a comment

Endo Sucks, Day 12: The best endometriosis video I’ve ever seen

Seriously, this is the best video breaking down what endometriosis is about that I have seen to date. It is perfect for sharing as an introduction to endo or as a refresher.

Click the image to see the video.

Produced by Endometriosis.org, it is currently being featured on the the website of Bradley Method instructor Kim Stanley in Tallahassee, Florida. A doula friend of mine, Erinn Streeter, works with her on her website and they have had this video on their welcome page for the month of March to honor endometriosis. I think that often, endometriosis survivors are so beaten down by the medical system even as we try to work with and fight within it, that they enter childbirth the same way: hands open and begrudgingly accepting whatever the doctors provide, without question. This is probably true for most Western moms-to-be — far too many, in fact. It has produced an C-section epidemic and shot maternal mortality rates so high because we are taught to live life in fear and pain and to ask no questions.

But we have options in our healthcare — and if you take one great thing from endometriosis, PCOS or adenomyosis, let it be the advocacy you are practicing for your healthcare. YOU are the best thing that can happen to you! Nobody else can advocate for you or educate you if you do not take a personal investment in knowing how strong you really are. I was worried a few years ago that doula training might mess with my emotions, but instead it rocked my world and opened me up in awesome ways. I am never more proud than when I am welcomed by a couple into the most powerful journey of their lives, no matter how their birth unfolds. At least they went in educated, open, and knowing not only that they are made of power but that they have a world of loving support around them.

AND SO DO YOU.