This is a new segment on Endobitch. It’s kind of a filler segment to keep us all connected in between our longer blog posts.

Every week, we’ll offer up a short little ditty (Endobitch: Meaning, a question or thought…) on an important or controversial topic for your consideration. We’d love to have you – our followers – weigh in on these “mini-posts.”

 Be well!

 Rant #1

Okay. So we all know that endo often starts when we’re teenagers, right after our first period begins. But somehow, this fact is lost on the rest of the world. We’re posting a short blurb from an article on Connect for Kids that deals with this very topic.

We’d love it if you would read this short excerpt, check out the video of a teenager with endo that went misdiagnosed – and then rant away with your thoughts and comments.

Endometriosis in Teens Often Misdiagnosed

Wednesday, January 31st, 2007                 Emily Halevy/CWK Producer

So often, a young women’s severe cramps are written off as something she has to get used to.” – Robert B. Albee, Jr., M.D., gynecologist

Over five million U.S. women suffer from a disease that very often goes undiagnosed. And for two-thirds of those women, the condition begins during their teenage years.

19-year-old Bethany Monroe is one of them. She woke up one morning in severe pain.

“It was awful – it was just – I, I didn’t want to be awake,” she remembers. “I just wanted to go to sleep, ‘cause it was so bad. It was just a constant throbbing and really sharp pain.”

The diagnosis: endometriosis – an abnormal growth of tissue in the pelvic area. It can cause inflammation, severe pain and sometimes infertility. And doctors say they’re seeing it more often today, in teens.

“The question would be are we starting to open our eyes more and making the diagnosis earlier, or are we truly seeing more of it,” says gynecologist Dr. Robert B. Albee, Jr. He thinks many doctors are just more aware of endometriosis now.

Either way, it’s often misdiagnosed. Bethany was told she had kidney stones; another doctor said appendicitis.

Dr. Albee says there are two reasons why it often takes time for a correct diagnosis. One, he says, “I think that a lot of people start with symptoms that are not necessarily specific.”

Another, he says, is “ignorance. Not considering the diagnosis – there are doctors that don’t believe teenagers can have ‘endo’. What a shame.”

Endometriosis is a Pain in the Ass

Note: This edition of Endobitch is dedicated to my very best friend in all the world (you know who you are.) For all that you have suffered so terribly at the hands of endometriosis, and for all that is unknown in the world of medical science. I love you P.

It’s a beautiful day outside. The sun is shining, the sky is a brilliant shade of blue, and by all accounts, there is little if any humidity. In our book, that makes today damn near perfect. Now if we just could get rid of that nagging pain in our asshole, all would be right with the world. We know, even though you’re in pain, you laughed at that one didn’t you? We did too. Even though endo can be unbearably painful at times, it’s like they say, (Endobitch: And, by the way, who the hell is “they”?) if you don’t laugh, you’ll cry. And we cry way too much, so we’re laughing in spite of ourselves.

We thought today would be as good a time as any to delve deep into the issue of pain. Why not? It’s got to be laid out (Endobitch: Splayed out?) at some point. We’re talkin’ ‘bout the deep, body-shaking, nerve-wracking pain that is one of the classic hallmarks of women with endometriosis. It is a nemesis that haunts our daily lives and is often something so truly excruciating that it is unspeakable. It can destroy even the simplest joys in life – such as a cloudless, endless blue sky, sunshine wrapped day – and turn it into a dark and unimaginable hell hole. So there’s really no good time – and no time like the present – to delve into the world of pain and all its many faces.

All righty then. Let’s get down to it.

Today’s issue is: What’s this pain in my ass?

Yes, uncomfortable as it may be, many of us have asked this very question. (Endobitch: Not us. We’re fully aware that the pain in our ass is your shoe giving us a good swift kick…) Endometriosis is a fickle sister, but when she comes to party, she parties hard. Contrary to popular belief, Endo does not walk alone. Endo has made some very loyal friends along the way and one of them is Pain. For those of you that don’t know this already, Pain is Endo’s best buddy – her life-long friend. Endo and Pain went to kindergarten together and used Elmer’s glue to stick the new teacher’s uterus to her left ovary. They stuck by one another (Endobitch: And our insides.) through the changes that come with puberty, giving each other high fives when young women doubled over in agony. When high school came, they double dated with their boyfriends, Colon and Cul-de-Sac. It really was a beautiful thing, but it didn’t end there. Pain and Endo supported one another through several difficult marriages and failed attempts at conception. Their ex-husbands, Pelvic Floor Dysfunction and Total Hysterectomy, were taken to the cleaners in a nice divorce settlement. Through it all, Pain and Endo have always remained solidly together.

So today, we thought it only appropriate that a formal, categorical guide to Pain and Endo be forever immortalized in writing. We’re sure you’ll agree that Pain and Endo are truly deserving of this prestigious honor. We can think of no two conditions that have worked harder to destroy our sense of self-esteem, self-worth, and quality of life.

So here’s to you, Pain and Endo: May you forever take pride in the fact that you’ve managed to weather so much and still come out our backsides smelling like shit.

The Endobitch Reader’s Categorical Guide to Pain and Endo

The following is our attempt to categorize the many different types and levels of pain that women with endometriosis must suffer through on a daily basis. If you don’t see what you’re looking for listed here, feel free to make a suggestion (including a description) and we’ll add it to the list.

Pile Drive

This Pain scenario is easily recognizable. In most cases, you will find yourself face first in the plush pile of your living room carpet. (Endobitch: When only a moment ago you were standing upright, drink in hand, chatting with your mother about next week’s brunch.) Additional symptoms include watering eyes, lack of breath, and a general inability to function until the Pain subsides, which could be hours from now.

Freezer Burn

Hallmarks include the inability to move even a fraction of an inch. You may find yourself stopping mid-stride as you cross the Target parking lot, freezing in place, and excruciatingly waiting rather until the Pain decides to give it up and move on. This can last anywhere from several minutes to a few hours. The sensation that you’ve burned all your bridges and have no way out of this mess may be particularly strong during these episodes. The most difficult part of this situation may be when curious passersby ask if you need help and you politely answer, “No, I just thought I’d stand here and admire the shopping cart corral for a few minutes. Thanks anyway…” through gritted teeth.

Curl Up and Die

Indicators that you are experiencing this syndrome include a curled-up fetal position, an oversized heating pad strapped to your pelvis with extra strength Velcro, prescription strength Ibuprofen that has taken but is not working, and a low, guttural moaning (Endobitch: Ours is a high pitched keening sound.) coming from deep somewhere in the throat. An additional indicator is the feeling that you would rather die than live with this Pain one more second of one more day.

Hot Cross Buns

This scenario includes hot flashes, sweat dripping down your face and armpits, a general feeling of dizziness and inability to think, causing you to fall back on your ass and exude a general attitude of bitchiness and non-compliance. This is often accompanied by significant bone loss that makes breaking appendages much more likely. The most common cause is the regular application of a drug fondly known in the Endo community as Lupron. The taking of this drug may also be accompanied by unknown individuals admonishing you for taking Lupron by screaming, “Nooooooo! Don’t take it! It will destroy your body! It’s a terrible drug!” and your general response of flipping them the bird, such has the mantle of your pain become.

Waking the Dead

Indicators include waking up from a dead sleep in the middle of the night (or sometimes early morning) and actually wishing you were dead. General symptoms include severe Pain in any area of the body, but especially where Endo has decided to infiltrate, grow, and swing like a monkey in a tree from one organ to another. It also includes the inability to get up (at all) and calling in sick to work, even though you’re risking your job because you’ve already used up all your sick days. Finally, you will know this syndrome by the simple realization that you haven’t changed your bed sheets in a month because, well, you can’t get up.

Gut Bomb

This entails the feeling that someone, somehow has implanted an explosive device in your abdomen, which has now detonated, and requires surgical intervention. Tell tale signs include various organs that are misshapen and stuck to one another in configurations that would seem to be impossible, the inability of prescription pain meds to do their job, and the politely appropriate but horrified look on your surgeon’s face when he/she tells you they did all they could and… you’re good to go! (Endobitch: When you secretly know they’re just passing the buck because your insides are so fucked up that it’s really impossible to know where to start to fix this mess.)

Have Pillow, Will Travel

This one is pretty straightforward. Your pain has become so frickin’ severe that you’ve taken to carrying your own special pillow with you wherever you go. Seriously folks, nothing else – and we mean nothing else – will do. Your arsenal may also include your own special chair, heating device, or whatever may make any small, marginal difference in pain management. It may include special pressure garments to control fluid build-up, progesterone cream for your skin, special food for a special diet you’ve started to try and control the growth of endo, and your special lucky red ponytail holder. (Endobitch: Because, there may be a very minute change that  it really does have magic powers.) Seriously, those of us with Have Pillow, Will Travel have developed a whole regimen around specific items we believe may help to reduce our pain. Deal with it.

Code Blue

This scenario is about going in for a basic laparoscopy to remove adhesions and waking up in the hospital due to a code blue bleed out during recovery. Day surgery becomes a week-long stay in the hospital and 10 weeks of recovery and multiple trips to the ER for follow-up. Sound familiar? The tell tale sign would be allowing a non-endo specialist to operate on endometriosis.

As you can see, Pain and Endo are two sides of the same coin. They are Laurel and Hardy, Lucy and Ricky, Carson and McMahon. You don’t see one without the other. We would give our left arm if Endo and Pain would become like these couples of yesteryear: remembered but no longer present. Now that would be something to shout to the world about.

So, to all of you suffering every single day with the intolerable, agonizing, debilitating pain of endometriosis, we lift our glasses in your honor:

We wish you moments of peace.

We wish you moments of laughter and lightness.

We wish you moments of kindness and support.

We wish you love.

But most of all, we wish you freedom from the pain and agony that has become your life.

There. We’ve said it. Got it? ‘Nuf said.

All righty then. Let’s get right down to it. (Endobitch: Yay!)

 

Today’s topic:

Why does the UK have such a fabulous endometriosis awareness campaign and the U.S. has absolutely squat?

The United Kingdom has gone and done it again. They certainly don’t let the grass grow under their feet. They’re not afraid of controversy, and they’re certainly not afraid of offending someone. They’ve created the coolest, most effective endo awareness campaign we’ve ever seen. (Endobitch: You mean there’s more than one? We’ve never seen anything that comes close to an awareness campaign.)  It’s called Bloody Hell. Seriously, what could be more appropriate than that? (Endobitch: Nothing. Nada. Not a thing, Endobitch girlfriend.) We just like saying it: Bloody hell. Bloody Hell. Bloody hell. Why? Because it’s so frickin’ true.

Endometriosis is not a new thing, now is it? Our cruel little buddy (Endobitch: Let’s call him Bastard Buddy!) has been around the block a time or two and has learned how to kick the asses of all the nice little neighborhood girls. And we’ve put up with him. We’ve put our tails between our legs and let Bastard Buddy kick us to ground. We’ve learned how to suffer and keep our mouths shut. Why? Well, we can give you one good reason out of many: Because there is no national awareness campaign in the U.S. that really gets to the heart of the matter. There is no one out there kicking and screaming and shouting: We’re mad as Bloody Hell and we’re not gonna take it anymore! No, we’ve left that to the Brits. Without an awareness campaign we will never, and we mean never, get the kind of attention, care, and funding we need to find a cure for this devastating disease.

So here are a few key questions we’d like everyone to consider:

• How can there be more women with endometriosis than breast cancer, but no one seems to know (or care) about it?
• Why is there no specialized funding source dedicated to conducting research for a cure, when so many women’s lives are ruined by this disease?
• Why do our families, friends, and co-workers think we’re faking it every time we’re in agony?
• Why do people that know nothing about endometriosis compare our pain to the kidney stones they had when they were twelve?

We’ll tell you why. Because nothing has been done educate those in power. What does that mean? Those in power = those with the ability to change this crappy situation. Those that can designate funding for research. Those that have the ability to create understanding and awareness about this disease. Those that have the keys to endo city. (Endobitch: Politicians. Health officials. Millionaires. Where did the idea: “Do the most good for the most people” go?) They don’t know enough to be concerned enough to take action. There’s always something more important. (Endobitch: Right on, endosister.)

We think a national, U.S. endometriosis awareness campaign is in order. It should be advocated for, initiated, and funded by the National Department of Health. But not in isolation. Just for fun, let’s throw collaboration into the pot and say that the Edometriosis Association and other national initiatives working toward a cure should help to create, implement, and fund this campaign. Let’s get serious about kicking this disease to the curb. This campaign should include funding for research, a national “walk” to raise money for research, a national media campaign to raise understanding and awareness –  and while we’re at it – let’s throw in money to cover all the medical expenses not covered by our insurance. And we’re just getting started. Screw the a-wipes that don’t care because “this isn’t a life threatening disease.” Are you totally messing with us? Seriously? Since when does a disease that prevents us from working, paying our bills, taking care of our families, enjoying the one life we have, and going under the knife over and over again not qualify as life threatening? Challenge us. We dare you. (Endobitch: Sorry. No can do. You’re kind of scarey Endobitch…)

And since we’re stirring up the pot, we’ll kick the whole thing off by making the first contribution. We’ve come up with a couple of campaign slogans that we think would garner a wee bit of o’ttention. How about these:

• Life’s a bitch –  and so am I – because of endometriosis.
• Don’t let life cramp your style when endometriosis can do it for you.
• Stick with endometriosis and it will stick your insides to you.
• There is one pain I often feel, that you will never know, and it is endo.

We could go on, but why bother? Until the major players in the endo world step up to the plate and take this on, we’re just wasting our time. We’re doing our part, now it’s their turn.

There. We’ve said it. Got it? ‘Nuf said.

Okay, so here we sit. All’s quiet on the Western Front. We’re hoping to create some controversy, some conflicted emotions and feelings. We want you to get riled up in a positive way – so that others will sit up and take notice. We have no idea if it’s working. So far, we have just three (Endobitch: Count ‘em three.)  comments on our blog postings. Now we’re not knocking those three comments – hey – gracias amigas. But, ultimately, we define our own fate, right? So we figured we’d just weigh in on our site and how we feel about it. (Endobitch: You go Endobitch girlfriend.)

We think our blog is absolutely stellar. Fab. The rage. Bitchin’. (Endobitch: Right on!) Problem solved. We hope you agree.

All  righty then. Let’s get down to it.

Today’s issue is:

Some women only have hard decisions left to make.

We’re thinking about all the women out there tonight that are suffering. Pain. More pain. Terrible, excrutiating, unbearable pain. (Endobitch: Say it with us, sistas! Get yer’ heating pad and turn it on high!) We know you want this to end. We know you feel like you just can’t take it anymore – and you probably can’t. Faking it at work. Faking it at home. Faking it at the charity ball where you’re trying to raise funds for some other worthy cause. You have this cross to bear and, well, it’s just too much. We hear you, we really do. Maybe no one else does, but really, we do.

That being said, we personally know many women with endo – from mild to severe. We’ve all been through the ringer  – and it’s not about to stop. We’ve tried changing our diets. Cut out the sugar. Cut out processed foods. We’ve just about cut out our digestive tracks and while we were at it, tried to rip out our stomachs. We’ve tried acupressure, acupuncture, physical therapy, occupational therapy, and drugs.  Oh, speaking of drugs – can you say true friend and arch nemesis at the same time? We need the drugs to function, but then we’re labeled as “drug seeking” because of it. What the hell? (Endobitch: We want Vicodin…oh! And while you’re at it –  Percoset!) Drugs = relief. Drugs = addict. Are you kidding us?? We all know it’s because the people prescribing the drugs have never had endo and if they had, they’d be standing on the street corner handing out free samples.

Let’s get down to brass tacks. (Endobitch: The bottom line, so to  speak.)The reality is, that some of us only have hard decisions left to make. We’ve tried everything there is to try. We’d stand on our heads and rub our vulva’s at the same time if we thought it would make a difference. Why do we keep fooling ourselves that some alternative treatment will fix the problem? Why do we think that suppression – by Lupron, birth control, or some other drug – will keep the endo from coming back? (Endobitch: F-ing Lupron. We can feel our bones whittling away as you write.) It won’t.  It may lesson symptoms. It may improve our functioning, to some degree. But it isn’t a cure. It won’t fix things long term. We want it to, but we’re here to tell you, it won’t. Many of us are at a crossroads: continue trying alternative ways of fixing the problem or go in deep and have surgery. Face it, surgery has become the only option in many cases.

So what’s the problem? A little anesthesia, some slicing and dicing, and wha-la! Problem solved. The problem is that this is only the beginning.  One surgery leads to another, and another, and then still another. When will it ever end? Hard answer: It doesn’t. One surgery does not a problem solve. Many of us are in it for the long haul. That means that just because you’ve had surgery, does not mean you will not have another surgery. And another. And so on.

And there’s a dirty little secret related to all of these surgeries that very few of us talk about.  The secret is that too many endo surgeries can do more harm than good. It may help with the endo, but it can then cause a whole new set of health problems. Complications from trying to dig that crap out of our organs, pelvic floors, and whatever else you care to name. (Endobitch: Can you say “double bind”?)

This is why many of us only have hard decisions left to make. We can’t fix this through diet, exercise, and positive thought programs. (Endobitch: Thanks Tom Cruise.) We have to seriously consider going under the knife over and over and over again. We have to risk exposure to a whole new set of health issues due to way too many endo surgeries. Truth be told? That seems to be the only real solution, doesn’t it? Until enough funding is designated for diseases that affect women – and only women – we will be sentenced to suffer. Period. (Endobitch: I’ve got mine!!)

There. We’ve said it. Got it? ‘Nuf said.

Need we say more? (Endobitch: Nope.)

No Good.

Nightmare on Endo Street

In the Dark

Red Endo

Too Much Information...

'Aint it Purty?

Hey, What's THAT?

Ewwww. Ouch.

Anyone coming to this blog must have a damn good story about endometriosis. (Endo Bitch: We know we do.) But rather than share our own stories, we would like to hear yours. Seriously. Use the comment section of this post to blow off some steam, let your hair down, and let ’er rip. We are so there with ya sistas. 

 

This is our very first entry on our fab new blog – Endo Bitch. We hope we just keep getting better from here on out, but we’re not making any promises. Since this is our first post, we felt it should be one with teeth. (Endo Bitch: We love controversy…)

Before we start, we want to say one thing. There are a hell of a lot of good OB/GYNs out there that perform excellent annual exams, help us with our female problems, and get us through pregnancy, labor, and delivery. We sincerely thank you for all you do. You play an important role in our lives and we need you.

All righty then. Let’s get down to it.

Our topic for today is:

There are just way too many OB/GYNs out there with a God complex.

Yes, that’s what we said: A God complex. Maybe you’ve heard of it. If not, no problem. We’re totally into the whole community service thing, so here’s a definition to make sure we’re all on the same page. Urban Dictionary defines God Complex like this:

A person who is said to have a “God complex,” does not believe he is God, but acts so arrogantly that he might as well believe he is God or appointed to act by God. (Note: Some believe that “God complexes” are particularly common in arrogant, highly educated, worldly, or powerful people.)

That’s it, the good ol’ God Complex. Arrogant? Yes. Always knows best? Yes. Powerful? Yes. That describes many of the doctors we’ve worked with over the years. This whole God complex thing is one of the biggest barriers to getting effective, proper treatment in the endometriosis community. We’re talking about doctors that really don’t know a damn thing about treating endometriosis, but want us to believe that they do. (Endo Bitch: They probably believe their own total bullshit.) It is also something we haven’t spoken out about for fear of losing the care we so desperately need. (Endo Bitch: Refer back to note about arrogant, powerful, etc. etc.) Speak up and you could lose your doctor. Speak up and you could be left alone to suffer in agony while your doctor plays the 9th hole in a round of golf. Whatever happened to free speech?

Well, screw that. We’ve had enough of this craptastic treatment. We’re done being cut open and closed up by doctors that don’t know how to help us. We are sick women. We are vulnerable. We want to believe our doctors can help us and we’ll do just about anything if we think it will deliver us from pain and debilitation. So we do the surgeries. We take the medicine. We get down on our hands and knees to beg for any small glimmer of hope our doctors can give us. The problem is, we need experts. Experts in endometriosis that know what they’re doing.

So we’re here to set the record straight. We’re calling you out. We’re takin’ it to the mattress. Bottom line? We’re asking you to knock it off. We’re asking you to do your job – which means referring us to a specialist when you are out of your league. Really, we don’t want to be forced to post your picture on our Endo Wall of Shame (Endo Bitch: Just kidding. We don’t have a wall of shame, but wouldn’t it be great if there was one?)

Our List of Demands

You’re probably thinking right now that a couple of sick women with a list of demands for OB/GYNs that have a God complex is rather hilarious, if not pathetic. (Endo Bitch: It is funny. But what the hell, we have one anyway.) Go ahead and laugh. What do we care? The Constitution probably started out as someone’s “To Do” list on a piece of wood that just kind of morphed over time into this really important document that shaped our country as we know it today. Our list? It’s a sticky note destined to become part of the Hippocratic Oath – an addendum so to speak. It’s dedicated to all the OB/GYNs out there that have screwed us over, left us in agony, and that have shattered the hope that we could get help and get better. All so that you didn’t have to admit you didn’t really know what you were doing. (Endo Bitch: Oh! We just love dedications. Nice.)

There is no nice way to say this, and anyway, we’re sick of being nice. So listen up:

• Quit acting like you’re an expert in endometriosis. A medical degree and the title of OB/GYN does not qualify you to open us up to dink around with our insides.
• Quit pretending that you have the knowledge, skill, and expertise to conduct surgery to remove endometriosis, when you don’t.
• Quit telling us that there is nothing that can be done for us. The only reason you do this is because you don’t know how to help us.
• Quit telling us you “cleaned us out” and we’re good to go. You did absolutely nothing but open us up, do a lookey-loo around, confirm we have endo, play with your laser gun to remove a lesion or two, and then close us back up.
• Quit telling us it’s all in our heads and we should probably see a psychiatrist. It’s not in our heads, it’s on our organs. Like our uterus. And ovaries. And fallopian tubes. And bladder. And kidneys. And colon. You get the picture.
• Quit acting like you’re the last stop on the route – that if you can’t help us – no one can. It’s not true, and you know it.

Christ almighty, when it comes to endometriosis, just refer us to a specialist. Believe it or not, they do exist. You won’t lose our business or our respect. In fact, you will gain our allegiance and our loyalty. Be honest with us when you don’t have the knowledge or the skill to operate. Tell us that you don’t know enough about endometriosis to do us justice. You will gain our trust and save us from an unnecessary surgery by a person unqualified to perform it.

As the line in Jerry McGuire goes:

“Help us to help you.

Help US to help YOU.

HELP US TO HELP YOU.”

(Endo Bitch: Ah, the line was actually, “Help me to help you.” But, well… never mind.)

There. We’ve said it. Got it? ‘Nuf said.

Welcome to Endo Bitch. We’re glad you made it to our site. We are the Endo Bitches and we’re here to bitch about endometriosis. If you are a woman with this disease, then you know what we mean.

We hope you will come back to visit often and we welcome you to post comments on our bitch sessions.