Endometriosis Awareness Month

I hope to make entries on this blog a weekly affair, but I was overly optimistic when I put the first post live the week before our move…I actually have two more pieces on pain medication drafted, but I want to interrupt the series before March is out to mark Endometriosis Awareness Month.

My Story: Silent Suffering

Endometriosis impacts the lives of millions of women and, in turn, every person who loves those women.  In my case, I suffered from increasingly painful, heavy periods that only got worse as I entered my mid-20s.  It wasn’t simply a matter of popping a Midol…the pain was often overwhelming and made it hard to function.  Still, perhaps because of all the silence surrounding women’s health issues, I said nothing.  Gradually, the number of days each month that the pain impacted me increased until it was present the better part of the month.  Not every day was intense, but it wasn’t confined to “just” the days right before and during my period.  And the heavy flow days began adding up too.

I thought about seeking help but I didn’t.  In fact, I had an annual exam with a gyn and was ready to say something, but he never asked about my periods and I got shy (easy to feel when in such a vulnerable position!).

What finally made me speak up?  I passed out from the pain at work, sending my chair clattering, and leading to my secretary putting me in a cab and sending me to my GP.

Speaking Up and Learning About Endo

Once I spoke up, I was lucky and the docs listened.  Endo can only be diagnosed surgically so they investigated other possibilities first including via ultrasounds, a barium enema (awful!), and an upper GI series (a barium swallow).  Each time, I felt an odd mix of frustration and relief when the tests turned out negative.  I had, however, been pretty certain that endo was the culprit from the first time it was mentioned and eventually a pelvic laparoscopy (an outpatient surgery) confirmed my hunch.

There is no cure for endo – a frustrating reality given how much suffering it can cause.  Endo involves tissue that would normally be found in the uterus being located elsewhere.  This can cause pain when it responds to hormonal shifts.  While not every woman with endo has fertility trouble, but it is one of the most common causes of female infertility.  It can also cause crippling, debilitating pain and loads of lost productivity.  It is a tricky beast and the amount of tissue growth doesn’t necessarily correlate with the impact on the woman.  A woman can have small tissue growths that cause terrible pain while another woman might have quite a lot of growths and not a single symptom.

In some ways, I’m lucky.  I take continuous birth control pills meaning I go from week three in one pack to week one in another, never taking the inactive pills and never getting a period (btw, a period on the pill isn’t truly “real” anyway and there is no medical need for that week off).  For me, that has helped a lot.  Truthfully, endo also fell lower on my radar when severe back pain began to dominate my life and the pain medication (woohoo, sorta fits in the midst of my meds series!) I took for the back pain dulled the endo too.  As I’ve stopped those meds and gotten at least some relief from back pain (a whole separate story…still have some pain, still have hope I’ll improve), the endo has made itself known again.  I’ve had three surgeries to remove endo tissue and wonder when (not “if”) another will be on tap. 

Why Observe Endo Awareness Month?

What do I hope to accomplish by sharing my story?  First, I hope to make at least one other woman feel less alone.  I know that finding other endo sufferers online helped me.  Second, I want to increase awareness about endo and help fight the stigma around issues surrounding menstruation and women’s health.  Too many women suffer in silence and too few people understand how much endo can impact a woman's life and the lives of her family, friends, and colleagues.  Heck, my blogging platform doesn't even recognize the word.  Third, I want to be one more voice encouraging increased research (and funding for research) into the cause of and treatment for endometriosis.  Maybe it is just a view colored by being an endo patient, but I really believe that if men got endo there would already be a cure.  That aside, this condition is far too common and causes far too much suffering (both in terms of pain and fertility) to remain a bit of a mystery.  

Pain Medication Part One: Band-Aids and Desperation

The proper thing to do would probably be to start with a general introduction to the blog.  Or maybe an introduction to me (though you can find a bit of both by clicking on the Introductions tab).  Or a post that starts, well, at the beginning.  Or, at the very least, a post that steers clear of controversial issues.

But, I don't really feel like being proper.  This is what's on my mind these days.  And in...or, more accurately not in...my body.  So this is where the blog will start.  It is shared with the hope it shines a light on a sometimes difficult to discuss part of life with chronic pain.  Side Note: To be honest, I must admit I started writing this series several weeks ago so "now" isn't quite now...I wanted to have drafts for a few poss before going live.

• The Big Debate

There are few issues as controversial in the chronic pain community as pain medication.  I believe this is a decision each patient needs to make for herself (or himself...please assume all pronouns are intended to be inclusive).  There are very valid reasons to steer clear of strong pain medications.  Opiates and narcotics have MANY downsides.  Anyone considering them should fully educate themselves on these issues (e.g., dependence, addiction, potential exacerbation of pain over time, etc.).  The problem is that all too often this decision is tainted by stigma and judgment.   

Here's the plain truth -- Pain medications exist for a reason.  Pain medications have VERY valid uses. There IS life after pain medication.  Pain medications are NOT inherently bad.  It is not fair to let the misuse of medications result in the shaming of those who use them properly.

This is my journey through the maze of medication (well, technically, this is part one....I ramble and I need to break this story up...).  Spoiler Alert: Despite the downfalls, despite  the very real pain of physical withdrawal, I do not regret my choice to use pain medicine.

• Pain: Where It All Starts

I'd used pain medications before, both in my journey with endometriosis and in the period leading up to and following my first back surgery.  Approximately six months after my first back surgery, I found myself spiraling.  I stopped physical therapy, in part because of insurance reasons and in part because it had gotten so hard that I was dry-heaving just minutes into my routine.  The pain that had seemed to be remitting bounced back.  Fiercely.  I knew then, years before the doctors confirmed it, that something was wrong.

I think I've blocked out the full force of the pain but I remember knowing that it had hit a new level when I couldn't manage to follow the silly banter of Hoda and Kathie Lee on the final hour of the Today Show.  They outwitted me and, if I don't mind saying so myself, I'm typically a smart gal.  I went from feeling so overwhelmed by pain that all I could do was watch tv in bed to feeling even more overcome so that all I could do was watch the ceiling fan spin.  I watched for hours.

There are no words to describe that place, the place where pain takes over and overtakes the self.  Where intense pain dominates your every thought.   Where you resist waking...that is, assuming, you've managed to sleep...because you know that all the day will hold is more pain.  Where time goes so slow and yet other hours pass in a fast fog when the pain overwhelms your mind and you just kind of go away.  Where you are defined by the pain and you have trouble imagining anything else.

• Band-Aids & Cures

I'll talk about that place in the future, probably many times.  Even though I couldn't recall what it felt like NOT to be in pain, I was still committed to fighting with every ounce of energy I could muster.  Some days I had to hit "pause," the energy wasn't there, but I committed.  I needed to believe that there was a future, even if it felt far away.  I knew in my bones that my pain had a source and  I had to believe that someone had an answer.  It was hard to hope, but it would have been impossible not to.  As I say about many things in pain-land, you do it because there's no viable alternative...you do it because you do it, even if that sounds a bit trite.

The experience I had in those days with one pain clinic will also be fodder for another day's post (tentatively titled: A Healthy Sick Gal's Top Five(ish) List of Care-less Care Providers), but I needed HELP.  Desperately.  And, for me, I felt pain medication could provide that help.  I told myself every day that pain medicine was a temporary measure.  I believed (and still believe) that pain medications are often a Band-Aid, a way to stem the symptoms while you look to answer the real question, the "Why" of the pain.  They let you live (and I truly believe they saved my life) through the bleeding while you find the source.  Thankfully, I found my GP agreed and believed in me and my commitment.  He saw my pain and my truth...a vision for which I will be eternally grateful (and that will make another post, the Healthy Sick Gal's List of the Very Best Caring Care Providers).  He recently told me he remembers seeing the pain in my eyes and thinking he could help act as a central contact while I worked with specialists to track down the problem.

• To Come --> A Long Journey, A Hope, and the Battle to Break Free

That's the start.  Still to come..my journey with pain meds, a tendency towards tolerance, a search for an answer, a fight to break free...

Note: I understand there is no true privacy online.  I realize my story can be found, even if I (for now, at least) don't sign my name.  Could someone find this and judge me?  Sure.  Let them.  If they looked hard enough, they'd learn the facts anyway so they might as well hear the story behind them.  I KNOW that I have used pain medications in the way they are intended to be used so I say loudly that I did NOTHING wrong and have no reason to be ashamed.  I am proud to have fought my fight.  

(Pills image by Pam Roth; Bandage image by Philip Bump)