Posted by: endobitch | July 14, 2009

Endometriosis is a Pain in the Ass

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.

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Responses

  1. Great list ladies! I’m certainly no stranger to a bunch of those. I laughed so hard at “No, I just thought I’d stand here and admire the shopping cart corral for a few minutes. Thanks anyway…”

    That is sooooo me! lol! too funny! Another great post!

    To the P in the dedication I hope you are doing well on your recovery. xoxo.

  2. Loved this list…so true!!

  3. Utter raw & sarcastic comments. I was suggested a hyst as I was recently diagnosed at Stage 4 but I am sure that doesn’t surprise you. Thank you for making some dark humour on this shitty disease. All the best to You & P. Hang in there sisters!!

    • No surprise at all. It seems that a hyst is always recommended when a doctor doesn’t know what else to do with this disease. It may, in fact, be the right treatment in some cases. So we don’t want to bash the hyst – in some cases – this may be critical and necessary, and may help. But in many, it is not helpful and may not make any difference at all. Unfortunately, we think it’s recommended all too frequently when there may be other ways to deal with the disease before having a hyst. Other ways, meaning excision by a specialist in endo. And of course, if you are reading our other posts, then you know that this is not reimbursable by insurance to the extent it needs to be in order to really treat this shitty disease. There in lies the problem… Thank you for your post. We’re sending our best thoughts your way for a pain free day – at least one!!

      • Just wanted to update you, saw an excision specialist & going to try that he told me & I don’t know if this is BS but there is hope at Stage 4?

  4. Hey Endobitch,
    This is P. As I lie here not knowing if I will recover enough from the effects of this disease to even go back to work, your humor, as usual, keeps me smiling! I am not sure what you would call this one, but I am currently experiencing a one-thigh potty move. That’s the one where if you sit on the pot straight on after endo surgery, the swelling and inflamation won’t let you “go”, so you you tip against the wall, and balance on one thigh and eureka!!! W are good to “go!” Proud to be your life-long EndoSis and we are never gonna give up!

  5. okay, not more than half way through the paragraph on todays issue and i burst into laphter so hard it hurt (and that has been rare since the perscription tramadol was given to me)

    “they used elmers glue….” hehehe. will likely make a 2nd coment if i get to finish reading. thank you for that. it just made my day!

  6. Hey Endo Bitch, When I think about the lack of health care in this country it makes me crazy. Folks with endo have a hard time getting the treatment they need because insurance won’t pay for it. I was so so angry yesterday when I heard that the Senate Committee for Health Reform was going to take a Public Option off the table! OMG! Why are we protecting insurance companies?! We have to do something. Perhaps your readers might be interested in signing the petition Cititzens for Real Health Care Reform and a PUBLIC OPTION — http://ga3.org/campaign/healthpetition

    Every voice counts and we need all the help we can get!

  7. Brilliant. Thank you so much.

  8. I laughed so hard I cried… or maybe it was the other way around… Thanks. 🙂

  9. See pdf’s on

    http://www.endometriosisexplained.blogspot.com

  10. My pain has worsened to the point of waking up many nights from the pain.

    This week I’ve only just realised that what I have is most probably Endo…and I keep getting a dislocated hip. Appointment with pain clinic and then I’m back at the docs insisting on a Lap test. Wish me luck.

    Humour – such as yours helps. That and emotional support are essential. I hope you post again soon and that your own pain is more managable now. 🙂

  11. This was the first time I have ever heard someone succeed in explaining my pain. I am in tears! Reading this was like hearing that song for the first time, you know that song? The one that the artist had to have taken the thoughts right out of your head to write.

    Your last blog post was quite a while ago, so I don’t know if you will get this comment. But if you do, it would make my entire life to get a response. If you are interested in keeping your blog going with guest posts, I would happily jump on the opportunity.

    I just started my own humble blog, my first blog ever, with the hopes of accomplishing for others what you just did for me. I humbly ask you to please visit it at http://www.endofriendo.blogspot.com. so we can chat.

    Either way, thank you for describing my pain & letting me know that I am not alone in this torture!

    Take care,
    Jenn

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  13. I vigorously (as vigorous as one can be with endo) second Jenn’s comments. I’ve been so so down because of the recent endless pain, and I read this blog and laughed to the point of tears. It didn’t just make my day, it made my whole month. I’m so sorry to see how long ago your last post was and hope you will post more, but if not, thank you thank you thank you. You are an awesome writer! I wish you would write a book about endo. It would be so entertaining and hillarious and unflinchingly true that everyone would want to read it. That’s my idea of the perfect awareness campaign!
    Next time somebody asks me what endo is like, I’m referring them here.

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