A place for endometriosis survivors & supporters, and all that goes with it.


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Guilt over not participating in my own life (or at least Star Wars Weekend)

Can I just vent for a minute?

I am really getting down and sick of how unpredictable and uncontrolled my endo and adeno pain is. I am trying to live any sort of social life but end up just going to work, surviving, going home to sleep, and repeat. And I’m getting upset over ridiculous things. Tomorrow, for example, I have been dying to go to Star Wars Weekend at Disney in Orlando, especially since this is the last weekend of the year and Mark Hamill and Billy Dee Williams will be there. I have been talking it up and getting excited. Today, I wake up and I am beyond thrashed. Well, I say wake up, but I really mean “have several short naps from 3 a.m. to 2 p.m. and finally pour myself out of bed and stumble around the house like a zombie.” Hell, I’m still in pajamas right now! I haven’t even taken anything for pain, even though I’d like to! I am trying to work myself up to go out to have dinner at 7, I can hardly fathom getting on the road at 7 a.m. to spend the day in the heat in Orlando and drive back that night. And what about my pain management? I am back to rationing my meds each day, and the codeine I’m sorry to say is not really effective. It’s a difficult admission. So I have people here and in Orlando that know I *might* come, but I might not, and it affects not just me because there’s getting the dog cared for, and making sure I have clothes I can actually wear through the day, and staying comfortable. I just don’t know. I’m exhausted at the very thought. Another opportunity for fun, probably down the drain. Another year of planning to go, gone.

The pose on this statue by Rodin just cries Shame to me. Image found via Google Creative Commons.

Statue by Rodin, image found via Google Creative Commons.

I already had to decline the wedding invitation of a friend I’ve known for 20 years because I’d be in Chicagoland alone, and with as weird as my pain has been, I can’t risk being stuck in a hotel room or banquet hall and not able to get around, or not be able to wear pants, or swell up to pregnancy size. Or worse, being in total incoherent pain and not able to care for myself, or get back to my hotel, or having to explain myself to someone there, spending the money and not being able to go or drive safely, and and and … I just can’t risk it.

I know I get stuck in this cycle of making decisions based in a place of fear. But I feel like I’ve done a hell of a lot pushing through my pain, especially college and beyond. Now I feel like it is catching up to me. And I feel such extreme guilt over not being able to do participate in my own life. It can’t be healthy.

These aren’t the first events I’ve had to sacrifice in the name of endometriosis. I guess they won’t be the last. And that is infuriatingly sad.

I wish very much that I could just make decisions and go and do and not have a million “ifs” and items to tick off the list. Isn’t that what normal people do? They get to go and do things and not have their pain sitting on their shoulder (or anywhere else, for that matter), guiding their life experience? I can’t be the only one who feels like this.

Maybe I’m finally getting to a point of making that Very Difficult Decision.

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You know your gyno is frustrated when …

.. You write “want to discuss BC” on your forms for your gyne annual, and when she comes in she’s wincing and saying “Do we *REALLY* have to talk about your birth control? Nothing has worked for you!”

Lucky for her I just wanted to remind her of the new birth controls I now receive for free (thanks, healthcare overhaul). Also lucky for her, I didn’t kick her in the ovary.

To be fair, she’s been my doc for years, and we have literally tried every. single. thing. Every pill, shot, insertion has been exhausted either before I got there or under her care, except for pregnancy (a fallacy!) or hysterectomy. It’s monumentally frustrating that not one thing has given me the promised relief of alleviating my period entirely, which I made very clear to her at this visit.

But it’s also very frustrating and insulting to be actively told you’re “that patient.”  That difficult one. It ain’t so easy on this side of the stirrups either, sweetheart.

Just a flamingly ignorant comment from an otherwise very supportive physician.


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Pain in body and mind

It’s true I’ve been gone a little while.

In the last month, I’ve had a nerve conduction test and more MRIs to check for nerve damage and update my doctor and my understanding of the status of my Chiari malformation. I’ve worked on posts and saved them, complete with photos.

I wanted to tell you all about how I sucked up my pride and messaged a local infertility center, hoping to be seen and find out how my Last Ovary Standing is holding up these days.

I wanted to post photos from Hanukkah, Christmas and New Year’s Eve that were inspirational or at least a “hello” to you all.

Instead, my status as of midnight NYE — what I always considered the most romantic night of the year — brought a very painful end to my 3 year relationship with my boyfriend, the best endo supporter I could have asked for. We lived together for nearly the entirety of our partnership, and now, moving out … I mean, holy shit, how do you dismantle a life? It would be easier if we hated each other; we don’t. We care deeply for each other and had plans for a future. The only thing I’m happy about is that he’s going to seek out what he needs and that I helped open the lines of communication between him and his family in the process.

Not that it makes a difference to the pain of separation. It doesn’t matter if you knew it was coming for months or it caught you by surprise, it’s not fun and it’s not easy.

Right now I’m staying at mom’s house, crying often, hiding in bed not eating (and eating femme stereotype foods like Ben & Jerry’s Phish Food ice cream when I do) and watching movies — favorites like “The Princess Bride” and “Alien.” And according to my Woman Pro Calendar app, I should have started menses on Thursday. I’ve had lots of signs (mostly cramps and pelvic ache and acne) but no Aunt Flo. This is not too surprising as stress will override everything, including your birth control, but it provides me no comfort, having the symptoms but no manifestation.

So if I disappoint with the updates in the New Year, I apologize. We all fight battles. Some are fought with a sword. Others are managed with a heating pad. And still others by letting yourself just be sad for a while.

Here’s to 2013 only getting better from here, every single day.


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Staying home: Damned if you do, damned if you don’t

AH, MONDAY.

Fuck you.

Normally I would have already been at work (my days off are Thursday and Friday), but I took Sunday off for the wedding party (which I missed) and Saturday off because of how I was feeling (and because it was already on the books, for some reason).

Last night the pain was bad enough that I was using the down-on-all-fours labor position, breathing through it and getting light-headed. I took a pregnancy test to rule out ectopic pregnancy (negative), and decided to call the gyne today if it continued.

So while I’m able to be a mostly upright human being today, my head is splitting open and I am unsure of how bad things may get today. I can already feel that bone-deep pain creeping down my legs, so my guess is “not awesome”.

And there’s a presidential debate tonight, so I know I’m going to want to fall over before the night is through.

And then, what should be a ray of hope: Boyfriend has mistakenly been given today off. Boyfriend offers to work my shift so I can stay home on FMLA.

Problem, you say? What problem?

Well, there’s guilt: we are beyond short staffed at work and can use everyone. Plus, why should he have to cover me because I have cramps? And I feel like I’ve abandoned the rest of the crew.

There’s fear and shame: Last week was so bad I tried to stand up to talk to a boss and almost fell over. This prompted many questions on his part that I was flustered, and I could have dodged but decided “oh fuck it” and told him the truth. Then he looked flustered. And I am afraid of getting so bad, like I used to, that I have to be taken home, or have people asking me all the time what’s going on and looking and feeling like shit at work, where I am supposed to be strong and indifferent.

So where does it stand? I’ll probably post this, and then get in the shower and go to work, like a good little soldier. Don’t expect me to dress nice, though.

What about you? What does it take for you to stay home or back out of events? How do you feel about it?