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.

That said, I have made some changes that have helped a lot. No pyramid schemes, no hipster bullshit remedies, no essential oils. I added probiotics to my everyday diet and have eliminated virtually all gluten (don't look at me like that).  I still hurt a lot, but I haven't gotten a UTI or had any other complications since I made those changes.  Every woman is different.  You're going to have to figure your own shit out and that sucks, but it's necessary if you want to stay sane.

When a doctor tells you that it may take up to three months for your body to adjust to birth control, be aware that after three months if you complain about lingering issues, they will tell you that some women take up to six months to adjust.  And so on.  Tell your doctor to fuck off if he or she doesn't acknowledge that spending months bleeding is unacceptable.  

Regarding recurring UTIs:  If a doctor asks if you wipe front to back tell them to fuck off.  This is not your first rodeo.

If someone looks at your social media accounts and says, "Well you don't look like you're in pain..." 
Yes.  Tell them to fuck off.

Thursday, February 23, 2017

You Aren't Special : Part II

I waited a little while to publish this, because I recently sent a letter of complaint to the company and was hoping for a response.  I didn't get one.  

Here's the email I sent:

Two years ago I was in the middle of my wounded animal phase.  (That period of time following disaster when you've limped off into the woods to recover in private.) I was still pretty beat up.  I had stopped writing completely.  I was having increasingly obsessive thoughts, which wasn't really new for me, but the intensity and frequency in which they took over was a little scary. And all of this was made worse by my endometriosis, which had returned after a long hiatus.  This meant medical appointments, ER visits and experimental treatments, all knitted together with the same fine thread of uncertainty.  Psychological and emotional struggles are heavy, but paired with physical pain, the weight was oppressive and constant.  Every day was the same.  Every day was bleak.

It was a lot, all at once, and I was just trying to keep it together.
        "I need something good.  I need a win." I thought.
And then I got the interview, and it was just so perfect.   I think if it had just been a midlevel encounter, I really might have kept floundering.  But it wasn't. It was the extreme I needed.  It was AWFUL.  It was bizarre. So bizarre that I suddenly had to write it all down. For probably the first time in my life I didn't have a notebook, so I had to go buy one.  I recorded it in detail. The decor, his tone, his expressions, his condescension and how it felt.  I didn't want to forget any of it.  In the time it took me to write it all out I wasn't obsessing over death, illness or guilt.  It felt wonderful.

I was still a bundle of bruises, but I was out of the woods.

Saturday, February 18, 2017

You Aren't Special : Part I

About two years ago my husband and I moved to Southern California, initially settling in San Clemente.  I immediately started applying for jobs (I tend towards depression when I'm not working), quickly landing my first interview at a local tech company.  They had a solid reputation and the position (project manager) sounded pretty interesting. I arrived for my interview at a large, industrial building.  Very sleek, with lots of stainless steel, glass and hard edges. Like a fancy morgue. After waiting for a few anxious minutes pretending to look over the resume I had brought along, I was called into a conference room with my interviewer.  We'll call him Mr. D. 

 Mr. D was underdressed in jeans and a t-shirt, seemingly reveling in the juxtaposition of the setting and his casual indifference to it.  This meant that in my new pantsuit,  I was extremely overdressed.  So in addition to standard interview nerves, I felt sort of silly.  Like I was trying too hard.  He sat back in his chair, relaxed, and started the interview.  He had an accent but it was difficult to place.  Somewhere between British and over-enunciated English.  (Like Madonna, post-Guy Ritchie). The motion sensor conference room lights did not turn on automatically, so after we sat he stood back up and flapped his arms around to activate them.

     “So…tell me about yourself.” 
     “Well…I just moved here from Japan.”
     “Oh Japan! I love Japan!” He says.  “International experience is so important for Americans.  What were you doing there?”
      “My husband is in the military, so we were stationed there for three years.” 
      “Ehh.  A military wife.”  There is so much blatant disapproval in his voice I almost think I must be imagining it.  No one would be that rude. 
      “Question.” He says, abruptly. “Would you rather kill or be killed?”
I think for a moment, then reply, “Kill. If my life is in danger.”
He shakes his head in disappointment. “No. Wrong.”
      “Do you think it’s okay to invade a country preemptively because you think they might eventually attack your country?” He doesn’t care about my response.  I can already see him formulate a rebuttal to whatever I might say.
      “Well…I guess if you have evidence---“
      “You don’t.” He interjects.
      “Okay.  Then no.  I don’t think it’s okay to invade a country without just cause, because you think that at some unknown point in the future they might turn against you.”
He’s not listening to me as he continues.  “Preemptive is the most dangerous word in the English language.  Americans use it to justify all sorts of horrific acts of war.”

[At this time the motion-detecting lights went out and Mr. D stood and waved his arms vigorously.  This would happen three more times over the course of the interview.]

      “So…I see here on your resume that you worked in the psychology department of a university in…Indiana? What were you doing there?”
      “I grew up in Indiana.”
      “Oh God.” He sighs.  “The Midwest. Is there a more horrible, ignorant place? And now you’re here.  Girl from the Midwest in sunny California.  You’re probably like, (He puts his hands up to his cheeks, widens his eyes and raises his voice) 'Oh my God! California! I can't believe it!' I hate it here.  The traffic is terrible.  The people all so superficial and stupid."
      “Well, it’s not as though I grew up on a farm.  I was actually born in LA.  I grew up in Indiana, but the town is large and fairly liberal.”
      “Liberal FOR THE MIDWEST.” 

I have to get out of here.  I can’t breathe.  If I stay much longer I will die and he'll stand over my body shaking his head, saying something horribly condescending like, “Small town girl in the big city.”

      “But a psychology department.  That’s interesting.  The human mind is so interesting, don’t you think?  Have you read ‘De Anima? By Aristotle?" 
      “No." I admit.  "I didn’t study psychology.  I worked for the department’s PR department.”
      “But how can you not be interested in the human mind?!?  How can you not want to know why you do the things you do?” he asks, incredulous. 
      “Did you major in psychology? I ask.
      “Okay, okay, let’s get down to business.  Do you know what this job is even for?  Do you know what you’ve applied to be??”
He interrupts me. "It’s a project manager position.  Software developers are lazy.  They don’t like deadlines.  You have to make them finish their work on time.  Can you do that?  Can you be assertive and tough?"
I tell him that I think I could, to which he dramatically raises his eyebrows and stands over the table to mock asses me from head to toe.  "I doubt that very much."

And so it went, for nearly two hours, until he stood abruptly.  The interview is over and I have no idea how it went. 

He shakes my hand and says, "You're not special.  You must know that?"
And I say, "Yes."  Because I can't think. 
      "You see, I've interviewed probably twenty girls exactly like you.  Twenty girls who think, like you, that they could do the job.  But you can't.  I think you know that.  It's above you. But thank you for coming in."

And he was gone.  I walked out to my car, just sort of shell shocked.  I called my husband, who assumed it must have gone really well, since I'd been gone for so long.  After I told him what had happened and convinced him not to defend my honor with a good old fashioned midwestern stabbing, I drove home with the radio off.  I was mad, but mostly with myself.  Yes, he had treated me like garbage, but I let him. Why didn't I walk out after five minutes?  Why was my response to being told I was a nobody to AGREE POLITELY?! 

There were many times in the following months when I would hit a low point and hear his voice in my head.  "You're not special.  You must know that?"
And my response, "Yes."