Monday, April 23, 2012

Convulsion Shits

This morning I awoke to the most god awful pain in my left side.  My pain, that endometriosis or my fucked up back may or may (have) not cause(d), has always been left-sided.   Maybe I was born a political lefty.  There is no way that can be genetic.  My dad had the bad back, my mom has the endometriosis, neither the political leanings I do.  The left ovary is the one that I blame for this whole mess.  I hope you are rotting in hell, you worthless piece of shit ovary.

My left ovary was removed last May.  It kept exploding with cysts.  Some may beg to argue with my characterization of ruptured ovarian cysts as exploding cysts.  I experienced them as exploding cysts.  They sent me to the ER on more than one occasion, most notably after exploding during sexual intercourse with my boyfriend.  Fuck you, left ovary.  That left ovary was stuck to my bowels with adhesions on my last two trips into surgery land for my endometriosis.  Adhesions--yet another term Firefox does not recognize.  It is scar tissue.  And, if you are wondering, yes, adhesions cause pain too.  They prevent organs from freely moving as they are intended to in your body, especially in your abdominal cavity.  Firefox really needs to add some medical terms to its dictionary.

My surgeon tried to save the left ovary.  I don't know why.  It was a worthless piece of shit and still causes me pain even though it is gone now.  I suppose I understand why the surgeon wanted to save it.  I've tried to save worthless piece of shit relationships, worthless piece of shit people, and this worthless piece of shit world on more than one occasion.  [Have I told you about the punk anarchist that sits on one shoulder and the hippie on the other shoulder?  The punk anarchist is screaming today.]

Following the god awful pain in my side were some bowel movements that sent me into convulsions on the toilet.  I have no shame anymore in sharing the bodily functions social mores have taught us to hide.  I want the world to know what it is like to live with this disease even after LAPEX (laparoscopic excision surgery), the "gold standard" of treatment for endometriosis. 

Although I have no scientific evidence for this belief, I believe that older bodies and minds scar more easily.  If you have ever watched a kid fall really hard and bounce right back up, you know that kids' bodies can more easily absorb impacts.  Although it seems devastating at the time, teenagers seem to recover more quickly from broken hearts.  I believe younger bodies and minds recover more easily from injuries, broken hearts, and surgery.  Less scar tissue is left behind.

Parents, grandparents, friends, and other loved ones, please listen to your girls.  If they tell you they are in pain, believe them.  If their menstruation pain cannot be resolved with over-the-counter medications, if it makes them miss school or family activities, if it makes them lie in bed curled in a fetal position, it is NOT NORMAL.  Talk to them.  Get them to a gynecologist that specializes in endometriosis, preferably an excision specialist.  I hope for a day when we do not have to cut girls and women open to cut out the endometriosis lesions that bleed and bind abdominal organs together [Shut up, you fucking hippie.].  We are not there yet.  But, we do have more and better LAPEX surgeons than we did when I was a teenager.  They are the best hope women with endometriosis have for living a relatively pain free life.  

I'm screaming on the left inside today from what may have been left inside. 

That is today's crotch report.

Signing off,
Jen Pem

Saturday, April 21, 2012

What do I do?

What do I do?  Many people ask that question.  In our society, when someone asks you that question, they want you to tell them what your occupation is or what you do for a living.  What is it that you do that makes you worthy of numbers appearing in your bank account so that you may have a place to live, food to eat, clothes on your back, and perhaps a little left over to do something for fun?   When most people I don't know ask me that question, I tell them I am a professor.  They seem quite impressed and often shocked as I do not look like the typical professor.  I look relatively young.  I am a woman.  And, I don't wear a tweed coat or smoke a pipe.  I am always taken aback by how impressed or shocked they seem.  I'm not that impressed.  Like David Byrne, I often wonder how I got here.

They typically follow up by asking what I teach.  I say sociology.  That is when many stop being impressed.  Most do not know what sociology is.  Hell, most sociologists don't know what sociology is.  If they do have some vague idea about sociology, most assume that I am a card-carrying communist and worship at the altar of Karl Marx.  (As a side note, I do love me some Karl Marx.  He is one of the reasons I was drawn to sociology.  He saw suffering and injustice and imagined a utopia free of suffering and injustice.  I don't know what is so wrong with that.  Without the imagination for a new and different world, nothing will ever change.)  If they don't know what sociology is, they usually ask if it is like psychology.  I say, yes, in that both disciplines study people, but sociologists tend to focus on groups of people rather than individuals or individual states of mind.  I then try to divert the conversation away from that topic because, quite frankly, it is quite difficult to explain what I do.  And, most people in our country equate Karl Marx with communism and communism with totalitarianism.

I have a PhD in sociology.  When I am feeling well, I teach "sociology" at a liberal arts college.  I chose sociology as my discipline because I am easily bored, and I figured I could study anything I wanted to with a PhD in sociology.  It is also the discipline that spoke to my lived experience as a young woman from a white, working-class family, or what some might see as "southern white trash."

Sociology is not much of a discipline as it is an approach to critically examining the world.  I try to get my students to be THINKERS more than anything else.  I think I frighten many of them.  If I reach a few, I feel I am doing my job. More than anything I want to write about mine and others' experiences with endometriosis to expose the atrocities that women with endometriosis, and women in general, face in nearly every place around the globe.  I am working on this.  You will see a link on this blog and elsewhere for a study I am conducting on those with endometriosis. It is under construction. I want to give voice to those who have been silenced for far too long.

I am unabashedly a feminist.  When I say this, most assume that I am also a butch, lesbian man-hater. Some who call themselves "feminists" do hate men.  I think those people are just as uninformed and narrow-minded as those who label me a lesbian pinko commie when I tell them I am a sociologist.  

I am also a troublemaker when I am feeling well.  Troubling people makes them evolve.  I am constantly troubling myself by reading anything and everything I can get my hands on.  

Telling you what I am, however, is not the same thing as telling you what I do.  If I were being truthful, what I do now is go to doctors and pharmacies.  The number of doctors are staggering.  I have a primary care physician, an endometriosis excision specialist, a gynecologist, an endocrinologist, a cardiologist, a urologist,  a neurosurgeon, and a physical therapist on my payroll. In the past several months, I cannot remember how many times I have had my feet in those stirrups. I don't have a horse, but I ride that examination table like a filly.  I sleep a lot, once I fall asleep. Falling asleep is difficult for me these days.  I dread waking up.  When I wake up, I am in pain.  When I am asleep, at least I am not aware of the pain.  

What do I do?  I have been asking this of myself lately.  It is quite a different question when you ask others, "What do I do?"  They can suggest.  No one can really decide for you.  I know I cannot keep sleeping to avoid pain.  So, what do I do?  I am preparing for my fifth surgery (one of them a back fusion surgery) in less than two years.  Unfortunately, there is no way to tell what endometriosis is doing to the insides of your body other than to cut you open and find out.  There are no treatments other than to suppress your ovaries with GnRH agonists like Lupron (which I refuse to do...check out the side effects and the lawsuits regarding this drug) or trick your body into thinking it is pregnant with birth control pills. I took birth control pills for fifteen years. They helped keep the endometriosis at bay but ravaged my body and mind in other ways. I now have hypertension and am too old to take birth control.  Unless there is an endometrioma on your ovary or a large lump on your uterus (which I no longer have anyway) indicating adenomyosis, you cannot see endometriosis on an MRI, CT Scan, ultrasound, or X-ray.  So, under the knife...err laser (my endometriosis surgeon does not use a scalpel)...I go again.  I hope this time it will be the last. There has to be hope for a utopia for me anyway.

I do know that I cannot let keep letting the days go by wondering how I got here.

And, that is today's crotch report.  
Signing off,
Jen Pem

Friday, April 20, 2012

Introduction to The Crotch Reporter

My name is Jen.  I am human.  I have feelings, emotions, and thoughts.  I also have a disease called endometriosis (en-doh-mee-tree-OH-suhs). Although I believe I have suffered from this disease since at least the age of 12, when I started menstruating, I was not diagnosed until I was 34.   Endometriosis is a disease that is widely misunderstood.  It is pervasive, affecting approximately 10% of women or 176 million girls and women worldwide (Please see the Endometriosis Research Center at for more information).  Yet, Firefox does not recognize its correct spelling and provokes me to change it with its red squiggly underline.  I am really considering writing or calling Mozilla about this issue.  Are you listening Mitchell Baker??? Time listed you as one of the most influential people in the world in 2005.  You are a woman.  Yet, the product that you helped market as an alternative to Microshaft IE does not recognize the word, endometriosis.  I am losing respect for your product as I write.

I cannot remember the number of doctors I have been to in my lifetime to report the debilitating symptoms, most notably PAIN, of endometriosis.  Yet, it took 22 years for these numbskulls to diagnose me.  (More on these various numbskulls later...)  I am starting this blog to document my struggle and my journey.  It will primarily revolve around my experiences with this illness. I have other interests, so I will occasionally write entries about them too.  This blog is an attempt to reclaim the humanity that endometriosis and countless doctors robbed.  This blog is crotch journalism.  There are other crotch journalists reporting in wonderful and varied ways.  I am thankful for them as they have inspired me to find my crotch's voice. 

I must credit a thoughtful and wonderful colleague of mine who asked for a crotch report yesterday.  Here is my crotch report for today:

I have no kidney stones and no UTI (Urinary Tract Infection).  I was hoping that the primarily left-sided pelvic pain, flank pain, and pain under my ribs was (a) kidney stone(s).  It is sad when you are hoping for kidney stones. I went to a urologist yesterday who tested my piss and did an ultrasound of my kidneys. Ironically, I was reading about the Rolling Stones in Keith Richard's Life as I waited for an hour to see the urologist. I'm still waiting on one culture that was sent off to a lab.  I don't expect it to be cloudy.  That ends today's crotch report.
Signing off,
Jen Pem