Thursday, November 1, 2012

Endo

I'm sitting in a waiting room with all the pregnant women who are waiting to see grainy, slow motion movies of their babies. I'm nervous, visibly so, and if anyone notices me they might assume that it's my first appointment and I'm one of those women who never saw this coming. And they would be right- I didn't see this coming. But I'm not pregnant.

In the dark room, the ultrasound tech is not interested in talking with me. I'm lying on the table, shaking, trying to force myself to calm down. She is looking at a monitor that makes alternating clicking and beeping sounds, studying the images with a concentrated frown. I tell her I'm scared. "Do women always get scared about this sort of thing?" I ask, hoping for some reassurance.

She does not take her eyes off of the screen. "I don't know. Everybody is different."

"That's such a cop out answer," I snap back. And then I regret it. Don't be rude, I tell myself. She is helping you, even if it doesn't feel like it.

After a few minutes of silence, she prints out the images and stands up. "I don't see anything alarming, but your exam is only half over. I'm going to go show this to the radiologist. Then we have to put a camera up inside you and get a better look."

I sit up halfway. "What? My doctor didn't say anything about that."

She shrugs. And she says, "Don't worry. Most women find it tolerable."

Tolerable would be an accurate way to describe it. Nerve wracking, uncomfortable, but not the worst of the exams I've had during the last two weeks, as a host of doctors try and find the cause of the ubiquitous, searing pain in my abdomen.
Bouts of pain have come and gone for years, with spells of normalcy in between that are so long that I never worried too much. It got a little more prevalent this summer while I was on the boat. And since I didn't want my appendix to burst in Glacier Bay or the I'm-sure-it-must-be-cancer to spread to my lymph nodes as I talked about whales to passengers, I went to the doctor during a turn day in Juneau. The Jones Act paid for it.

The woman in Juneau told me it sounded like an ovarian cyst and that it would take care of itself. Then she gave me a prescription for Klonopin because maybe it was all in my head.

But it didn't take care of itself. It got worse and worse and worse. Something kicking me in the lower back repeatedly, a twisting, molten, agonizing pain twisting inside my abdomen.

Finally, on a backpacking trip with Andrew, it got so bad I could not walk. I lay down on the trail in a beautiful open valley and gripped at grass with my fists. This can't be normal, I said to him, breathlessly, urging him to scramble up the peak without me. This cannot be normal.

So the melange of doctors visits began. A woman reached her hand up inside of me and pressed on things- does this hurt? "No." Does this hurt? "Yes. Why- do you feel something?"

This is what I do- I try to jump to the bad news before the bad news jumps on me. Do you feel something? Is something wrong? Are you thinking we aren't working out? Are you losing interest?

When she said yes, she did felt something, I was surprised. I didn't expect her to actually say yes. I thought I'd hear what I usually do: that it was nothing out of the ordinary, it would go away on its own, it could be in your head anyway.

And so I was sent to wait with the happily pregnant women as it bucketed rain outside. The uninterested tech and the tolerable cameras. And afterwards, I couldn't stop shaking and feeling terrible about everything. I drank half a bottle of wine and made dinner and Andrew took me out to a movie, and later I cried on his couch and he said all the right things so perfectly.

The ultrasound pictures came back, a few days late but completely normal, and my doctor called and said that it was good news, but it meant we had to keep looking. She asked if I could come in the next day and see another doctor. So I did, another hand reaching up, pressing, asking if it hurt.

This new doctor was very kind and told me she'd taken her two little boys on a Disney cruise over the summer and how much they'd all enjoyed it. And then she asked me a bunch of questions, and I said yes to nearly all of them, and she said it.

"I think you may have endometriosis.

"What we need to do now is take a CT scan of your abdomen. I'd put you on hormonal medicine, but I see in your chart you have migraines with aura, so we can't do that. Let's start with the CT scan."

Endometriosis. It's something I've suspected since I was nineteen. Because some things just could not be normal. I've brought it up a few times, only to be brushed aside by doctors. "Have you tried Advil? Stretching?"

Endometriosis is not a disease that is cured, it's a condition that's managed. It's painful, but it's not the pain I'm worried about so much. It's the possible complications, which could mean, although does not guarantee, that it's really difficult to have kids.

The diagnosis has to be made definite, and then the options and treatment and answers to questions I am not letting myself look up on the internet. I'm waiting a little bit, because my friend Ryan said he was going to take me to his cabin in Montana for a week and get me away from everything.
On Tuesday night I lay there in the dark of his guest room with my bags packed and lined up at the door. Andrew and I broke up on Monday, which may sound like horrible timing, but we've been talking about it for a long time. And I was so dreading the lonely, longing time that would come after our break up that I just wanted to get it over with. And so we did and it was sad, but it was graceful because I prevented myself from saying no, please, forget about it, this is a terrible idea. Or I may have said that anyway. I don't remember.

And so between losing Andrew and letting anxiety take me on a spinning wheel of worst case scenarios, I didn't fall sleep. I lay there awake until Ryan came in at three fifty in the morning to get me up.

"I made it easy for you," I whispered. "I didn't fall asleep."

Ryan turned the light on and looked at me. He said, "Uh oh, hot stuff."

He texted the friends we were going to see: Lina is a wreck. Then he hauled me into the car and drove me all the way to Whitefish, Montana, which is where I am now.

14 comments:

Katie said...

I love you, Lina! I hope I get to see you soon and give you a big hug!

Lee Timmons said...

My mom was diagnosed and got three healthy kids, her best friend was diagnosed and got 3 healthy kids, and my godmother was diagnosed and got 2 healthy kids! That's just off the top of my head... Sending love over the mountains...

Kristan Liechti said...

When you get back to Seattle, lets make a date. Have some special lady friend time. You are good. This is only a small hurdle to jump over. :)

Sarah said...

Thinking of you!!

Bryan McLellan said...


It was 2009 and I had just been through a ironically devastating break up from a brief relationship. A friend had recently broken up with his long term partner, and whilst partaking heavily in alcohol one night a few of us decided some time on the road was called for.

The entirety of the plans were that we would drive straight to Bozeman, then work our way back. There would be drinking and exploring, mostly escaping for a spell. Each day we woke up, found breakfast and picked the next destination.

Its the most time I have spent in Montana. We hung out at old railroad yards in Bozeman, drinking beer and talking. We stumbled into Yellowstone over Memorial Day weekend along with the rest of America, crashed out the parking lot at the mouth of caverns. Then we explored Helena, a ghost town and camped in Glacier. We stayed at a friends cabin at a remote skydiving airstrip. We found a suspension bridge and visited my Grandfathers sister in a small retirement town on a river.

I remember it not washing away my problems at all, and receiving an email reminder of them as I was arriving back in Seattle. But all my memories of the trip are of big sun filled skies, friends and adventure.

Here's to more adventure, regardless.

SJJ said...

endo: a term used by cyclist that refers to the type of crash when one flies over the bike handlebars. "I was flying down the flowtron trail, hit a huge hole and endoed."

endo: short for "endometriosis."

Are you that clever, Melina?

[insert thought here] said...

Hi Melina, my sister Kate shared this blog post with me. I had something similar happen when I was diagnosed with endometriosis this year. It is almost surreal since I was only diagnosed with symptoms since the tests are apparently invasive.

Thanks for writing this, it's comforting hearing someone else go through it.

Erikaa said...

After I wrote my last comment, I have been thinking about my story and I wanted to share it here if you or anyone else reading this could learn from my experience.

I realized that something was wrong around when I was 19 or 20 as well. I was really private about my body and after opening up with some women I realized that how painful my periods were, that I couldn’t even move for the first 24 hours because my upper legs would go numb, wasn’t normal. When I told my doctor, I was put on Ortho-Evra, a birth control patch, to regulate my period to at least know when to expect it. It was debilitating my whole life not to know when I was going to be in so much pain that I couldn’t move so I could at least schedule around it. Ortho-Evra was taken off the market for having the risk of causing strokes and when I was taken off I had such bad migraines that I thought I was losing my vision. My doctor then told me that I wasn’t able to take Estrogen because when you have a migraine it exposes your brain that could also cause a stroke. That left me with 3 options: Progestogen (POP), Depo-Provera and iUD. The POPS seemed the least invasive on my body. All of the others were semi-permanent and I hated the fact that if I had a reaction to those, I wouldn’t be able to do anything about it. The problem with taking POPs is that you have to take it the same time every day for it to work. If you don’t have a regular routine, it can be invasive to your life. It also doesn’t regulate your period.

I moved a couple of years ago and when I went to a new doctor I explained my experience and she diagnosed that it was endometriosis. How I understood it, was that every time you have a period blood leaks out into your belly. Like I said earlier, my diagnosis is only based on speculation because the actual tests are invasive, I believe they have to open you up to see what’s going on in your belly. I felt the same way you did when I heard that it might cause complications when getting pregnant but my doctor said that it’s not always the case, I shouldn’t worry about that now and to cross that road when I get there. She had also suggested that since I only had a migraine after the withdrawal of the Ortho-Evra, that I could take Estrogen birth control again with the Nuva-Ring. The original treatment was to take it continuously and never have a period again, since Endometriosis should only cause damage when you have a period. I felt that was unnatural, so we compromised on having a period every 2 months. It’s nice to have it more regulated and only have to deal with it half the time. My only complaints were adjusting to the hormones in the first month and that it costs $80 every 3 weeks. I’ve had other complications with abdomen pains, but in general I try to live a very stress-free life and it’s been working pretty well. Sorry to write such a long post, but I hope it was helpful. I’m in the same boat as you right now fairly being new to the diagnosis, so if you want to chat about it feel free to facebook me.

Virginia said...

Oh Melina, please know that you are being sent happy and healthy nurturing thoughts from the west coast. Take very good care of yourself right now.

Sarah said...

Hoping that fear is unfounded....I struggled with infertility for a year before getting pregnant with my daughter because of PCOS, so I can relate to how scary that fear is! ((hugs))

dig this chick said...

Oh honey. Finally catching up on all of this. Hard stuff. Glad you are getting answers.

REALLY glad I am picking you up at the bus stop tomorrow and that I get to meet you! And then I can hear about all of this right from you.

x

Liane said...

I have PCOS and struggled for 5 years to call pregnant. Now I have a beautiful 3 year old son so please don't give up hope yet.

I found you through Nici (digthischick) and just wanted to say hi :) x

Liane said...

I have PCOS and struggled for 5 years to call pregnant. Now I have a beautiful 3 year old son so please don't give up hope yet.

I found you through Nici (digthischick) and just wanted to say hi :) x

Marci Harrell Sharpless said...

So I found your blog tonight, and I stumbled on this post. I was diagnosed with endo when I was 17. That was 14 years and three beautiful kids ago. There are so many treatments out there. Birth control pills to regulate things didn't work for me. Getting an injection of God knows what kind of meds for 8 months that put me through menopausal symptoms at 19 didn't help. What finally did was laparoscopy. It sounds very invasive, but in my experience, well worth it. I'm sure you have received tons of advice about what to do and not to do. I'll just say good luck, and I hope you find some relief. I don't even know if you read all of the comments, but if you want even more advice, I'd be happy to tell you what I've learned.

If you want something non invasive to start the process, I highly suggest chiropractic care. This has helped control my symptoms.