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


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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 9: Faces of endometriosis

I found this video on the blog Mud and Lotus the other day. It has some nice facts and photos of women who go suffer endometriosis.

Some of the surgery photos gave me the heebies. It also brought me fresh back to when I had my third laparoscopy in 2010. I bought a digital camcorder special for the event, planning on making a video about my experience. I ended up being so miserable and feeling so disgusting that I kept telling my mom and boyfriend not to use it, thus losing any possible contribution I might have made with it. Unless I have a fourth surgery of course, which is entirely possible.

It brought me fresh back to the terrible experiences of surgery and particularly this last one; I had a fever going in after having a serious reaction to my bowel prep, serious enough to land me in the emergency room of the hospital where I was due to arrive for pre-op a few hours later. My surgeon was not informed of this, even though the nurses told *me* he was. I developed an infection during the surgery and what should have been a day-procedure turned into about 5 days in the hospital … and they housed me in Maternity. MATERNITY. Insult, meet Injury.

So I spent days feeling dizzy from pain meds and burning from fever, walking the halls hand-in-hand with my boyfriend with my air-swollen tummy telling lies about me. Women in active labor would pass me and give me a nod, as if we were in the same situation and ‘hang in there’. Every night, often twice or more, nurses would barge into my room, frantic, throwing on the lights and demanding to know where my baby was and where was my husband? They took my blood every day and every time they congratulated me on being a mom. And on my last day, the head nurse (Nurse Wratched, as I called her) tried to send me home sans pain medication, leading to a yelling match with the other caretakers outside my door.

Going back to that — and to the way I felt in the photo below — makes my stomach drop. I don’t want to play this game any more.


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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.


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It’s Endo Month 2011!

And what a wild ride it is.

I plan to not only blog every day in March, as I have in the past, but to backtrack and fill in a lot of stories from the times in between. Believe me, it’s worth it.

Get your yellow on, kids, and e-mail your photos — be you survivor or supporter — to endosucks@gmail.com. I’ll share them here and at the Endo Sucks! group on Facebook.

Now for today’s post: A charming piece of nostalgia circa July 2010, when I underwent my third laparoscopy and hysteroscopy, another D&C, cystoscopy with hydrodistension (for interstitial cystitis), and a whole lot more. Brought to you by endometriosis and adenomyosis:

3dayspostop2010

Who looks preggo? *I* look preggo.

I look pretty miserable in this 3-days post-op photo, after my outpatient surgery turned into a four-day ordeal, during which I was housed in the maternity wing of Houston Medical Center in Warner-Robins, Ga. (adding insult to injury). My several hours in surgery resulted in the untangling of my left sigmoid colon and ureters; the freeing and event…ual removal of my right ovary and fallopian tube; masses of scar tissue and endometriosis removed from my pouch of douglas/cul-de-sac, intestines, bladder, uterus and right ovary; a D&C; round ligament resuspension, and even a few more smaller tests. It also resulted in an infection that kept me hospitalized for three days until my temperature and WBC were both stable. Photos don’t do the swelling justice; every few hours a nurse would come from the lab to check my blood, and every one of them congratulated me on my baby. One nurse came in frantic at 4 a.m. searching for my child and birth certificate. When we returned home to Florida on day 4 post-op, my boyfriend and I went to pick up a pizza. The women sitting while waiting for their order made the boy sitting with them give his seat up for me. Well, guess it’s not all bad. (Except for the near-week of shoulder pain from absorbing gas from surgery. That’s 100 percent bad.)


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After the cysto …

… And little to show.

A few weeks ago, at the behest of my surgeon, I went to a urogynecologist to get checked out. He concluded that my muscles and pelvic floor are just fine, but had me undergo a cystoscopy due to my random pains.

A relatively short procedure once he actually proceeded, I felt like a cow up on the hooks. The chair I had to lay in must be left over from the worst of the “put your legs up to your head and push” labor rooms. Strapped in, open, vulnerable. So mechanical. It took a little over an hour from iodine to clean-up time. I was able to see the inside of my bladder in real-time, which would have been more exciting if the damn scope hadn’t been scraping me at the time. (The muscle spasms I had for a few days afterward were no picnic either, but they gave me an analgesic for that and I made good use of it.)

And the result? Continue reading