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


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Insomnia is inhumane

So it’s after 5 a.m. again, I need to be at work around noon (good luck to me!), and here I am screwing around on the internet. What is with this insomnia? I know a few things might be stress from work (such as not liking a new project they have me writing, or having to do the design for A1 during a high-news time as it was on Monday with the Boston Marathon). Another is this cot is not the most comfortable and it’s humid. (Good god, Florida, please stop.)

Most likely, though, is my mind. It doesn’t shut up. EVER. I lay down for sleep, I’m exhausted, the dog is snoring his tiny maltese butt off, and my brain suddenly develops Tourette’s and keeps reminding me of the reasons *why* I’m on this cot, and what happened That Night, and weren’t the explosions awful, and you totally let your friend down, and couldn’t you just hurry and find an apartment, and Jesus all the shit that goes with boxing up a life and moving from a house to your mom’s house to fully into a new place, and can you afford that anyway, and are you going to visit New Zealand before you’re 30, and holy fuck you’re going to be 30 in October, and where are all these friends that are supposed to help you celebrate a milestone year because I don’t see any around …

Yeah, that’s just me doing stream-of-consciousness and listing a few of the things on my mind right this minute.

I’m going to attempt to slay insomnia now. What do you do to get rest when rest won’t come easy?

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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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Endo Month, Day 10: Yoga for endometriosis

Today’s post is a little late, but I do have a fine excuse: I spent almost the entirety of Friday enjoying quality time with my boyfriend. And when I say “quality time”, I mean “hours playing Dead Island, beheading zombies and eating pizza on the couch.” Which meant a late wake-up time today, and I had to be in early to a short-staffed workday with early deadlines thanks to the time change. Big fun.

But now that is behind me and I can introduce you to a site I recently found called YogaYin. On this site, yoga teacher Alannah describes her practice on focusing on women’s health and fertility, which takes on more weight when you consider she has severe endometriosis herself.

We’ve all been told that exercise helps manage endometriosis, adenomyosis and other pain, but when you are feeling like shit just walking from bed to bathroom it can be hard to muster up the will to go jogging or get to a gym. But I can say that, except for one truly brutal day, I always felt great and was really able to push through my belly dancing classes, just like when I was a competitive cheerleader. And my hips felt so loose and everything felt fluid rather than tight and twisting which was a great benefit.

So I present to you Alannah’s videos on Yoga for Endometriosis. I encourage you to check out her site, and definitely check out this video. Yoga is a gentle but effective exercise tool, all the more accessible for endo, adeno and PCOS women. Here is part one for endometriosis and flexible hips; you can find part two on her site and on YouTube. Let me know what you think!


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Day 30: Estrogen doesn’t help anything

Finally getting some energy back … thankfully! However, that doesn’t prevent the weird sleep schedule. That’s going to be a beast to get rid of, as 4 a.m. has become the new bedtime. And one of my crazy neighbors has a rooster that crows around that time, which has me totally boggled as well as slightly irritated. He’s become my 4 a.m. alarm.

Talked with Amazing PCOS Doctor (APD) last week about my crazy terrible moon, finally. He seemed rather concerned about how bad it had been but there wasn’t much to do as far as changing the pill cycle because the moon had just ended. The headaches are also bothersome. He’s attempting to counteract that with putting me on low-dose estrogen instead of my placebo pills, since the combination pill I’m on now is actually not doing me any harm. I haven’t realized it til now, but I haven’t been throwing up. Or totally crazy. Or depressed. Hot damn. This might work!

Except, of course, for the heavy, crippling periods and increased migraines.

Which leads to another thought … anybody on Microgestin ever have difficulty sleeping?

This would of course be perfectly timed with having to drive across the state for required doula certification this week. I start the estrogen on Wednesday and have to drive 3 hours after leaving work around 9 on Thursday night. Apparently I have to space out when I take codeine and the estrogen by three hours, but the pharmacy didn’t say why. This should be interesting.


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Day 17: To heat or not to heat

A coworker with a sore back from her cycle asked to borrow my heating pad at work the other day. I couldn’t even bend over to unplug it and give it to her, but I let her have it anyway. Is that a good thing or a bad thing? I didn’t feel the need to ask for it back, which is good, but part of that could be that I was taking pain meds the whole time so I probably wasn’t really aware of what I needed. Bah.

Sometimes you just need to be selfish!


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Day 9: Food, glorious food

Despite my poor sleep schedule this last week (with a “normal” bed time of 5 a.m.) and feeling sleepy around 10:30 p.m. in my 4 p.m. to midnight shift, by the time I got home, I was moderately awake and active. I hadn’t really eaten, so I rummaged around and found the last piece of kielbasa in my freezer (which I shouldn’t be having) and the last gluten-free doughnut (gluten-, wheat-, dairy- AND soy-free, to be exact). Most people would find that a strange combination; I find it to be another gift from the universe. It was delicious to me.

Oh, food. There’s so many rules to it, so many odd wants and diets and combinations. Everyone has their advice, solicited or not. PCOS changed a lot for me in the form of throwing my sugar out of whack and giving me a reason why I get shaky if I don’t eat properly (hypoglycemia is a bitch). I’ve been doing a lot better lately, but apparently not good enough some days: Last weekend I went shopping for pants by myself around 5:30 p.m. after having a few handfuls of grapes that day, and wound up sweaty, shaky and alone in an Old Navy dressing room. Like a dumbass, I told myself to soldier on and just get through what I had to try on, but a few minutes later I gave everything back to the attendant and ran (wobbled) to the food court for some juice (sugar) and chicken. Really, really embarrassing, and it would have been far worse if I’d actually blacked out in an Old Navy because I’m too stubborn to walk away when I think I might have found some jeans that fit.

But I’ve been mindful, though slacking lately, about what I eat. Last spring, I started Metformin (a glucose medication — pill, no blood testing) to try and keep things stable. I thought my Amazing PCOS Doc would want to do the glucose test again, since I’ve been taking the Metformin for a year and that can help manage the hormones better and as such improve ovulation, but he didn’t think it was necessary. He did an ovarian reserve blood test in February and, as it turns out, everything came back “extremely normal”, so there’s at least that!

I had been trying stick to a diet I found, in the appropriately named “Cooking for the Endometriosis Diet.” What a killer this one is: gluten-free, soy-free, dairy-free, no red meat, no caffeine, no sugar. I’ve heard that a gluten-free diet can help with symptoms of endo, and soy is a phytoestrogen, so that had to go … but wow. The hardest thing is dealing with myself, just because it can be easy to avoid the big things and knowingly eat better, be concious of everything, try different foods and combinations and save money by not going out as much, but first you have to get through the cravings. And I love my friends a lot, but I only have one friend who has stuck up for me and my diet changes while several of them encourage me to break it. And I have broken it, because I was disappointed in the results (I lost a little weight but not so much the symptoms) and I was out on a day trip. Well, we all know how easy it is to stick to something after you’ve broken the cycle, right? Ugh. Added eggs back to my diet (down to two in the fridge and won’t buy more after they’re gone), and that kielbasa? Definitely not a part of the plan. I’m going to give it another chance and really stick to it, but I’m not sure how long I’m supposed to wait to find out if it’s helping or not.

While the diet may be ultra-strict, it’s worth trying. I’m desperate.

Any input from the internets?


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Day 8: Writing without sleep

I just got home from work and have the workings of a classic (genuine) migraine, so this will be brief. Before you ask: Nope, it’s not from partying too hard or drinking — I only had two last night. It’s likely from not enough sleep — thanks for nothing, “spring forward”.

There’s lots of topics that come to mind but I know I’ll be up until 6 a.m. again if I get going now. (It’s a real possibility anyway.) Writing is so cathartic, especially for me, that I really appreciate everyone who says that they like my writing. I really like the idea of someone out there on the internets reading about my experiences and feeling a bit better about their own experiences because they can relate. If they didn’t, support networks wouldn’t exist in the first place. Last year, at the height of my stress during Clomid, I realized I hadn’t done any free writing in months. I bought a journal and have dedicated it to be just my journal for endo/PCOS issues. It was hard to get back into it at first — journaling for yourself and not for the internet audience tends to bring up memories of when your parents find your diary and want to talk about your feelings in the entries — but every time I wrote, I felt better at the end, even if I was still angry or concerned. It helps clarify what you’re really feeling; if you have a general depression, it can just hang on you, but if you are forced to put real words to it, you can figure out the root of the problem and work yourself out of it. I definitely recommend it.

I’m not going to say “Thanks for reading” or anything like that, because that sounds like a cheesy, disinterested form statement. Seeing that when I reply to friends on their personal blogs is irritating. I’m not your groupie, kid, and “Thanks for reading” sounds like the sort of thing a self-published romance writer would scribble on the cover of her latest novella featuring heaving bosoms and a farmhand with a heart of gold. What I will say is that hopefully this blog is doing more than just taking up space in the digital world and will eventually have involvement from other people going through the same things.