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


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Update on the little man

This is a follow-up to a post I made recently, detailing some health issues with my dog, Pippin.

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On one recent Sunday, I took Pippin to work. He’s the best in the biz.

Long story short: NO SURGERY FOR THE SMALL DOG! The ultrasound shows a nodule on his pancreas, and some of his organs were a bit enlarged, but there’s no cancer, no foreign object stuck in his gut, and absolutely no need for surgery, as the first vet had pressed so firmly into my brain.

Basically, his big tummy was full of air and food that was fermenting, which was the culprit in his gastro issues. He’s a small dog that’s getting older and the high-fiber vet food just wasn’t right for him. I put him on soft food of a different brand for a bit, but when that didn’t stop the gastrointestinal distress, we put him on the tried-and-true diet for doggy diarrhea: chicken and rice. He’s been eating it since with only one short-lived gastro issue over the weekend when we relented and gave him a bite of egg white.

No more panting all night like a cow in labor. No more shitting himself. No more tear-inducing farts that wake us up out of a dead sleep in the middle of the night.

My dog did not have cancer. My dog had to take a shit and change his diet. THANKS, VET NO. 1, FOR THE PANIC. I guess doctors of all shades can be total dipshits.

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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 16: ‘It’s always darkest before the dawn’

Got home late on Thursday night because I chose to fight the inclination to stay at home on my day off and went out with my mom and her co-worker, Angelique, for a cheap but grand wine tasting evening at a cozy local spot in San Marco called The Grotto. Five dollars for seven wines, not including the cost of the flatbreads and cheeses we ate. I’ll post more about it later today.

It was a definite toss-up on what to feature for my first post today, but in the end it came down to the following: It’s Friday, we need a power song, and I certainly need a power song as I head off to meet with a new doctor whose specialty is apparently endometriosis and is a minimally-invasive surgeon. So please keep me in your thoughts until I come back to you to share them.

I love Florence and the Machine, and this song is pure magic. It’s like soaring. I can feel something deep and dear puff up in my chest and I think of standing with pride and flying when I hear it. And it definitely speaks to what’s in us, calling on us to shake off the weight of the world. As the chorus says, “It’s hard to dance with a devil on your back/So shake him off.”

If I could have this song pumped into my ears when I need it the most, I’d definitely pay for that luxury.

So without further ado, here is “Shake It Out” by Florence and the Machine (lyrics below, some special ones bolded). A strong and beautiful day to you all.

Shake It Out” by Florence and the Machine
Regrets collect like old friends
Here to relive your darkest moments
I can see no way, I can see no way
And all of the ghouls come out to play

And every demon wants his pound of flesh
But I like to keep some things to myself
I like to keep my issues drawn
It’s always darkest before the dawn

And I’ve been a fool and I’ve been blind
I can never leave the past behind
I can see no way, I can see no way
I’m always dragging that horse around

All of his questions, such a mournful sound
Tonight I’m gonna bury that horse in the ground
So I like to keep my issues drawn
But it’s always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah

I am done with my graceless heart
So tonight I’m gonna cut it out and then restart
Cause I like to keep my issues drawn
It’s always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah

And given half the chance would I take any of it back
It’s a final mess but it’s left me so undone
It’s always darkest before the dawn

Oh woah, oh woah…

And I’m damned if I do and I’m damned if I don’t
So here’s to drinks in the dark at the end of my rope
And I’m ready to suffer and I’m ready to hope
It’s a shot in the dark and right at my throat
Cause looking for heaven, for the devil in me
Looking for heaven, for the devil in me
Well what the hell I’m gonna let it happen to me

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah


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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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I know you’ll check it out anyway, but just a warning.

Holy hell.

Have any of you ever searched for “endometriosis” on YouTube? You’d be shocked at how many videos are posted on there showing the cutting and removal of adhesions and endometriomas, as captured by laparascope. I’m fairly proud of my strong stomach, but there’s a huge difference between the scariest horror movie and watching a true life video of an ovary literally being torn open with instruments to access a very bloody endometrioma. Same goes for the burns left on ovaries, the uterus, etc. during the removal of adhesions.

It is certainly not the sort of thing you should be watching 2 days before your third laparoscopy/hysteroscopy/cystoscopy with hydrodistention, during which they will either be removing an endometrioma or — more likely than not — removing your entire right ovary and fallopian tube.

However, it is knowledge, and it’s important to see and know precisely what’s about to be done to me, and also a great way to show people who don’t understand why your pain and recovery post-op is so strong — or just don’t “get” endo pain and what’s causing it — a very direct path to “getting it.”

Am up at 6 a.m. partially due to a continually later and later bed time thanks to working nights and then coming home to my boyfriend, who stays up almost as late as I do. Tonight I am up so late (early?) because I was “sick” all day Saturday with severe abdominal cramping. It seems to have disappeared only to be replaced by severe pelvic pain, both deep and on the right side. Deep because of my recently discovered adenomyosis, and right because that ovary was recently found to be stuck to the side of my uterus with adhesions (severity unknown since endometriosis cannot be seen via ultrasound) and a cyst with debris that is almost as big as the whole ovary itself. The cyst is either a hemorrhagic cyst (ovulation gone wrong) or an endometrioma. Hopefully not anything else, either!

Tuesday is my next surgery. I plan to take videos and post them, and also return to the Endo Sucks! universe. Stick with me, the story gets better.