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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The buttonhooks are back.

English: Buttonhooks with handles made of horn...

English: Buttonhooks with handles made of horn and wood, on display at Bedford Museum. (Photo credit: Wikipedia)

 

These, my lovers, are buttonhooks. These sharp little bastards were used to help cinch buttons into the buttonholes of button-up shoes, naturally.

And for several weeks, the little demon in my pelvis has been using one to get my attention at most inopportune times. Like at work. Or home. Or sleeping. Or just trying to pee. I usually describe my pains to physicians and friends alike as like buttonhooks pulling my insides apart. (I blame the move “Sybil” for working this imagery into my psyche when I was 16.)

And sisters, the buttonhooks are decidedly back.

This is how I felt constantly before my third laparoscopy: lots of ripping and stabbing, sudden sharp tears of pain that moved quickly from the left to right side, or punctured through the right of my pelvis down through the cervix. You ever been punched in the cervix? Probably not, but most endo sisters are going to know what I mean. Guys, try to imagine one of those long slender metal knitting needles being used to get a really bitching penile piercing, except it’s sliding up your urethra.

Yeah. That.

At the end of February I had a pain spell that knocked the hell out of me. I suddenly lost focus of vision, had ripping, dragging pain from left to right in my pelvis, and couldn’t catch my breath — if I breathed in more than a shallow pant, it hurt like hell under my ribs. I suddenly burst into tears, unable to deal with the shock and terrible feelings. I ended up lying on the floor for a good 40 minutes while the waves of pain increased and then gently floated away. I was glad to not be alone, and Phil talked me through it — mostly he was on the internet, asking my symptoms and entering them into a WebMD symptom checker. After each inquiry, he’d tell me the online remedy was “go to the hospital.”

“Try another one,” I’d reply. I’m not going to the hospital unless I damn well need to. Not only do they not deserve any more of my money, but all they’ll do is keep me cold and braless for 6 hours, take an ultrasound or maybe an MRI if they feel adventurous, and send me home with the classification “unknown cause, please follow up.”

Even just tonight I walked to the bathroom here at work. By the time I got there I was gasping — the knitting-needle-to-the-cervix pain left me breathless and sweating. And the damn things go as quickly as they arrive, so had anybody walked in as I was regaining composure, it would have been a bizarre scene indeed.

I know that my intestines aren’t that happy with me. More pain meds mean more constipation mean more pain — you can’t get around it. And my wonky overtime schedule this week has mean I’m neglecting the awesome essential oils I was given that actually seemed to start to make a gentle difference in my stomach situation.

But what can’t be denied is that I’ve been here before. I was a crumpled mess before my last lap (just go back a few pages, you’ll see) and when they went in — DAMN. Massive endometrioma in the right ovary which was stuck to the uterus and that whole clump stuck to the pelvic wall; the left sigmoid colon stuck to itself and the pelvic wall; endo on the bladder, the uterus, and knotting my ureters together (AGAIN) and for the first time, endo in the cul-de-sac and the diagnosis of adenomyosis.

And I knew I was in pain. I was blacking out from it, even behind the wheel. I was going two weeks with no BM (as I have recently, and it is NOT fun). I was weeping and narcotic drunk and not functional. And it STILL took 4 years, three doctors and a third surgery for anyone to believe it could be “that bad.”

I can’t wait that long this time. Nobody should. I may have exhausted my resources locally, but that doesn’t mean I will let my body suffer. I have one ovary left and it is mine, endo can’t have it, and my life is mine, endo can’t have it.

So I guess it may be time to travel again. You know, I’ve never been to New York City …


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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?


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Hello, lovers. Yes, it has been a little while since I have been here. I’ll be filling in the adventures and misadventures as we go.

But today poses a particular problem that I know is not unique to me:

Do I stay home or not stay home?

I took the day off for the post-wedding BBQ of a lady I have known since the third grade. We’ve been out of touch over the last year and a half, except for her text about getting engaged and receiving the invite, and any visits she’s planned to my town have been canceled at the last minute. Our job schedules have kept me from taking off time to go down there when she isn’t working. Her wedding was private and held yesterday; today is a casual event by the beach.

Yesterday I was home, on the couch with a heating pad and codeine just from the threat of my impending menses. Today it has arrived and my internal organs are wringing themselves out like a soaked Libman mop.

Suffice to say, two hours each way to an event where I only know the bride and groom is *not* sounding like what all the cool endometriosis is doing today.

So the boyfriend and I are torn between going to show our love & support, and staying here since I’m worse today and not looking forward to being crampy and cooped up.

The biggest motivator? It’s not necessarily the long-standing friendship; she doesn’t seem all that bothered if I don’t show up (I texted her last week to double check the date and she responded “if it’s too far, you don’t have to come”). It’s that I don’t want to feel like I’m missing out AGAIN.

I missed my college friends’ nuptials in May because of a lung infection. I missed the wedding of a 16-year friend because of last-minute training for my job that never even happened. Am I really going to skip even this because of endo?

Is it prideful to go, or prudent? Is it smarter to stay home or suck it up?

Along with “Why me?”, this is the eternal dilemma of the chronic pain patient: Do I stay or do I go.

Neither is a winner.

*AMENDMENT: After further review and discussion, we found that the drive to the venue is 3.5 hours each way. No, just not possible. Endometriosis, serial killer of joy.*


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Endo Month, Day No. 6: Stabilize This

My OB/GYN and I met in January to talk about the continuing weirdness that is my cycle. I’ve had some odd changes since my surgery in 2010, including PMS like I literally have never had before (including serious irritability) and shorter, still irregular cycles. She seems to feel my remaining ovary may be struggling since the oophorectomy, and that I need to go back to the reproductive specialist to check my hormones again, and for more Clomid or stronger tests. (Happy new year!)

But beyond needing to go back for fertility tests, it came down to two management options: try a new birth control and try to tame the symptoms, or be prescribed a mood stabilizer so I wouldn’t care as much during my period.

Wait a minute. My options are pill, or … pill?

Choose carefully. But both will eff you up.

I wasn’t keen on adding another medication to my list, so I opted for Lo-LoEstrin Fe, the tiniest of the minipills available to date, even though taking progestin-only pills never helped me before.

It strikes me as odd that those would be the only options, or that a mood stabilizer would even be offered in an “either or” situation. She didn’t name any potential medications and I haven’t taken time to look them up.

I’m working on my third month on the birth control so I’m waiting to fully judge it until I’ve finished the 3-month trial, but it hasn’t really affected me yet so I’m not expecting any miracles. On the plus side, I’m not throwing up all the time, so there’s always a silver lining.

For some reason it kinda pissed me off that the mood stabilizer would even be offered. (Maybe that means I should have taken it.) You really have no more options for me, Medicine? It’s come down to just trying to keep me from bitching about how bad I feel as a management technique?

But perhaps I’m reading too much into this. What say you, Internets? Have you taken mood stabilizers, or would you?


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Endo month photo project – volunteers needed

If you have nice looking hands with nicely manicured fingernails, are a guy interested in spreading endometriosis awareness and support, and/or your partner is interested in doing a hand photo series, please email me at endosucks@gmail.com. I am hoping to do some (unpaid) photos for <a href=”on.fb.me/endosucks”>Endo Sucks!</a> and Endometriosis Awareness Month. Anybody who wants to can do the photos; either I will send you an email on what I want (harder) or take the photos myself if you are in the Northeast Florida area.


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Endo Month, Day No. 5: Advice for surviving the dreaded Bowel Prep

If you’ve had surgery for your endometriosis (and you should have, if only to diagnose endo), you’ve had to endure one of the greatest indignities Endo Gals face: the bowel prep. A solid day of fasting but for broth and drinking a cask of rancid, not-remotely-pineapple-flavored salt water prep, or gulping down a two-week supply of fiber laxative and taking lax pills. A full day of sitting on the toilet that, if nothing else, helps you lose some weight in the worst possible way and carves some serious time for bathroom reading into your schedule.

We’ve had a few newbies in the Endo Sucks! group on Facebook asking for tips on how to survive the bowel prep, including one on Sunday whose doctor inexplicably did not provide her a list of suggested foods and drinks for the BP Day. I sent her a link to How to Survive a Bowel Prep by the Center for Endometriosis Care and gave some advice from my three personal experiences, but I’m wondering if there’s anything I’m missing.

My advice:
* For food & drink: Chicken broth, beef broth, popsicles, lots of hydration (including flavored water, but no bubbly water post-op). Nothing red. Jell-O (???)
* Additional info: Don’t eat heavy the night before; make your bathroom comfy and clean ’cause you’re going to be there a long while; reading material is a must; gentle wipes (and you know why — a lesson I still hadn’t learned by my third operation); comfy clothing.

I’m stumped beyond that. It’s kinda old hat for me by now so I don’t really remember what my docs told me I could and could not have, but I can’t believe they never gave her an informational sheet. Please contribute any suggestions in the comments section, or add it to the Endo Sucks! group discussion! Amy’s surgery is Tuesday.