Tuesday, December 4, 2012

Sharing the Journey - Endo Syptoms & Diagnosis

I confess....when I started this blog, I certainly knew I was likely to ramble on about many a random topic (hence the name!).  I did, however, expect to have a few frequent threads including thoughts on health and fitness.  Life took a turn and the gym-rat has been in hibernation for quite some time, while health has taken even more of my mind with the back pain journey. 

I expected, however, to talk a lot more about dealing with endometriosis.   While I joke that the back pain "cured" the endo, it is still a part of my world in many ways.  I promised myself long ago that I'd talk openly about endo in the hopes of helping at least one other woman either feel less alone or helping find her way to a diagnosis.  This post is about the latter...about the symptoms I ignored and the process of getting to a formal diagnosis.  And, yes, it'll have some more detail than some folks might like to hear, but I think that detail is what could help someone recognize the symptoms in her own life. 
  • Signs & Symptoms
I was never one of those girls who wanted their period.  It always sounded like a hassle.  I wasn't happy the day it came and I definitely didn't enjoy sharing the "news" with my mom.  She was excited for both of us....and called EVERYONE...okay, maybe it just FELT like everyone, but I didn't really want to spread the word.  I was 13. 

My mom had "warned" me that it'd likely be heavy.  It wasn't so "bad" at first, but it got heavier with time.  And even in the early days it was more than I think is typical, although I've definitely heard stories of women with "worse" (these are the words that feel right, I keep using the quotes because I dislike the negativity, but I'm going to stop since endo IS negative....even if menstruation is natural and normal).  My periods always lasted 6 or 7 days.  I made a change to tampons because pads gave me a rash and there were times when I'd have leakage problems after less than an hour, even with the higher absorbency options.  Nighttime was pretty awful and I was often too worried about needing to change to sleep much.  Sometimes I'd set an alarm to go off every two hours so I could at least nap between bathroom trips.  My OB bill (my favorite, in part b/c I could easily carry a large number without having to bring a tote bag) was insane. 

And then there's the cramps....a word that doesn't even cover the pain I eventually had.  My mom had said that "we" were lucky and didn't get pain....and I didn't at first.  It built gradually, almost sneaking up on me.  I can't recall when it first hit, but I remember trying Midol at some point in college.  It got bad around age 20, seven years after I hit puberty.  Around that time, I'd have at least one day when the OTC meds didn't help at all and I had trouble functioning.  In grad school, it became my norm to end up in the fetal position for a good chunk of the first few days.  Eventually, the pain not only got worse but stopped being confined to a couple of days a month, first starting a few days before my period and lasting the duration.  Then, in a fairly sudden leap from there, it never stopped.  And one day I passed out from the pain at work.  I fell out of my chair and my secretary put me in a cab.  And I finally spoke up.

Before I move on, I'll add a short mention of the "least spoken" side.  Sex can hurt (and treatment via continuous birth control can severely hurt libido).  At times, I'd have severe cramping for days after.  I'm happy to "talk" more about this side via email to any women with questions but want to limit what I write out of respect for others in my life.
  • Diagnosis
Once I "spoke up", endo was mentioned fairly quickly (which isn't always the case...).  I just knew that was the right diagnosis the first time I read about it.  However, endo can only be diagnosed via surgery so it isn't the first thing they check for when a woman is experiencing severe pelvic pain.  I went between my GP and GYN for months doing tests, especially because the pain wasn't confined to my period (I think that's a bit unusual, but not unheard of).  I had a lot of different tests, including a number looking at gastrointestinal issues.  Despite the fact that I'd waited so long to speak up (or maybe because my journey had already been long), I wanted a label and a reason "NOW" once I did.  I remember going in for a pelvic ultrasound and feeling conflicted...I wanted an ANSWER so a "negative result" was hard to hear even though I knew it was a really good thing since some of the potential diagnoses would have been pretty severe (i.e. uterine cancer).

After eliminating some "easier to diagnose" possibilities, we scheduled the surgery.  A pelvic laproscopy is a relatively minor surgery, but it is still surgery.  I wasn't too worried about it though, I was really just glad to be moving ahead.  I actually "failed" my first pre-op check...they do a check-up before doing non-emergency surgeries and will postpone if you are ill (I ended up failing quite spectacularly since I developed walking pneumonia with the first hints showing the day I went for the pre-op appointment).  When the surgery finally came about, I was more nervous about the answer than the procedure.  When I woke up, other told me that they did find endo and the doc called me after I got home to confirm (he was gone when I woke but we had a follow-up planned and he did call that night).

In many ways, endo is a frustrating diagnosis since it is a chronic and incurable condition.  However, for me at least, just having a name can help someone feel a little less lost and a little more "recognized"...like she isn't insane or just complaining too much.  For me, taking the pill continuously (i.e. no inactive week, no period) has been a big help, but it is far from a cure.  I do still have pain, sometimes severe.  I've had two more laproscopies since the first one...they also try to remove painful tissue growths, so it is used to treat in addition to being used to diagnose. 
  • Moving Ahead
While I know what I experienced...what I still experience...isn't "normal" (like I assumed at first), I also know I'm not alone. It is part of my daily life, at least in the daily pill, but I have learned to live with it and it is MUCH more under control. .  Endo can be disabilitating, but it isn't always and identifying it is a key step to living with it (and, hopefully, keeping the symptoms at bay). 

I've met some great women, many online, who inspire me and who make me feel understood.  If I can be that for someone else, then there will be a positive to my journey.  Please do email me (brand new, blog-focused email address in the right-hand column) if I can answer a question or just provide support. 

  • P.S. 
I started this post on Monday, finished Tues around one (it is now Tues 11PM).  I started to get some cramping in the afternoon, wondered if it was just on my mind so feeling it more (sometimes it hides under the back pain...just not my focus point but does sometime hurt).  I found myself feeling weepy.  Later, I got spotting.  Turns out -- when I assembled my weekly pill case, I somehow missed the BCP (maybe the 2nd time this has happened & I accidentally missed more than a day).  I wonder if my body already felt "different" since, even when I'd only missed one pill (Sunday night's), I felt the NEED to do an endo post. 

Took the Tues pill this evening (saving Su & M...more than once i've dropped and lost a pill so good to have extras of the tiny things!).  Didn't double-up since that makes me feel ill and there's really no need (since normal use has a week off every month, two days in like a year isn't an issue in "regular" functioning of the pill).  Already a good bit of cramping but I think I headed it off.  Plus, I assume the regimen for my back pain is helping with the potential pelvic pain.  In a way, it IS good to know things still function...I know bleeding on the pill is NOT a real period, but it still seems like a positive sign that the spotting hit when it should...shouldn't go beyond that (and I did get much lighter on the "ordinary" pill regime, it also helped confine the duration of cramping, but the pain was still too high).

1 comment:

Annabelle said...

I think it's great that you're setting all this out there. The onset of my health problems were, shall we say, definitive, but it took me forever to get to a very vague diagnosis. And frankly, even now I get a lot of "it isn't well understood," but they've figured out a reasonable treatment regimen all the same. It would have been nice at the beginning if I'd been able to draw on other people's experiences like that.