Wednesday, March 1, 2017

Endo Comprendo

You know what I really don't like talking about?  My period.  Your period.  Anyone's period.  
And yet here we are, because in a cruel twist of irony I have been battling a disease that requires me to talk about my period.  A lot.  And while I'm not entirely comfortable with it, nor have I ever written about it before, I also recognize that it's a very isolating and scary thing to experience.  It's always a comfort to talk to or hear from someone who knows exactly how it feels.  It's like being thrown in jail and hearing a quiet voice ask, "What are you in for?"

What is Endometriosis?
Endometriosis ("endo") is a chronic disease in which tissue that normally grows in a woman's uterus decides to go on a walkabout. 
Every month the ovaries produce hormones that tell the cells lining the uterus to multiply. If a woman doesn’t get pregnant, these cells are shed as menstruation. When these cells are found living and growing outside of the uterus, that’s endometriosis. These endometrial cells grow just like they would in the uterus.  Although endo usually stays in in the pelvic region, in rare instances it has been found in the kidneys, lungs, heart and brain.

What does it do?
Hurts, mostly.  
Common symptoms are pelvic pain, killer cramps, bowel or urinary issues, heavy menstrual flow, long or irregular periods, pain during sex, infertility and nausea.  (I would also argue anxiety.)  In my first outbreak I had a cluster of it between my uterus and my bladder, making it sort of feel like I had a UTI.  For a year. There is also a lot of a lot of new research coming out that endo contributes to vaginal and urinary tract infections as well.

What causes endo?
Nobody knows.  It is the Bermuda Triangle of diseases.

I was diagnosed thirteen years ago during a laparoscopy to see what was going on in my uterus. I had my first child via cesarean section, so I attributed my pain to that for almost a year before realizing that it wasn't going away. My symptoms included constant pelvic pain and the urge to pee when I didn't really need to.  Sit down, ouch.  Stand up, ouch.  Bump into something, ouch.  Have sex, OUCH. You get the drift. During the laparoscopy the doc removed a few cysts and a mass of endometrium from between my bladder and uterus, and for the next few years I felt pretty good.  Little did I know that sneaky-ass endo was ramping up for a come back.

It happened slowly.  My periods have always come exactly twenty-eight days apart, like clockwork.  I have bad cramps the first two days and then I'm good.  Suddenly I was having cramps for three, five, ten days. My lower stomach/pelvic area became bloated and tender to the touch. When I laid down flat on my back I felt a lump just under my c-section scar (endometrium had amassed under my c-section scar, which formed a lump.). I put off going to the doctor because frankly, the Naval Hospital is not my favorite place to be.  I always seem to get the fresh out of med-school doctors who view signing a referral as a form of failure.  And daddy didn't raise no quitter!  The problem is that these bright-eyed Doogie Howsers are in such frequent rotation that I rarely see the same one twice in a row.  That means that every time I go I have to re-explain my entire medical history. It's a bit like going to urgent care for every appointment.  There's no continuity and they see too many patients to remember you, or even what disease you have.  (Although one doctor did remember my cervix.  No joke.)

But I sucked it up and went.  And went. And went. Over the next few years I saw countless different doctors, each with their own ideas of what would help me. 

*FYI they prescribe birth control for endo not as a cure but as a way to try to control the process by which the endometrial cells develop and thus, spread. 

 At least ten different kinds of birth control pills, sometimes getting prescriptions for two at a time, one to counteract the effects of the other (hormonal hell/weight gain/acne/lots of breakthrough bleeding). 
Ortho Patch (like wearing a dirty band-aid every day).
Depo shot (heavy bleeding for five months).
Mirena IUD (spotting for eight months).
Pelvic floor therapy (I'm sorry, there's just no way to dress it up.  It's vigorous fingering.)  
I went to the ER three times, had countless ultrasounds and doctors appointments and lots of breakdowns.  
The symptoms mirror a lot of other, more serious and scary things, so sometimes when a new symptom hits you think, "I hope this is the endo and not something worse."
Often when you voice your concerns, doctors shrug them all off or give you that "Whaddya gonna do?" look.  And usually, I can tell it's because they really don't know enough about it to have any idea how to treat it.

Four months ago I was exhausted and defeated.  I had endured two solid years of experimental treatments and side effects and I was DONE. I had the IUD removed, stopped taking the hormones and demanded to be put in the primary care of a gynecologist (until then I had to get a referral from my family doctor for EVERY gyno referral). Most importantly,  I started doing a lot of research, having realized that in order to be my own advocate, I had to educate myself.   It has taken these four months for my body to get back to a semi-normal state.  I am not "cured."  Normal for me is constant pain, but at least now I don't have side effects on top of that pain.

It's very disheartening.  In the past I ignorantly categorized chronic pain almost as a psychological issue. Perhaps a mild case of Munchhausen Syndrome mixed with hypochondria.  The reality is that chronic pain becomes a psychological issue, in that it starts to wear on your psyche. It's difficult to remain upbeat.  It's exhausting. And it's lonely.  So I guess that's why I'm writing this.