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


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UPDATED: Ovarian Age is just a number

I waited all week to call and find out my anti mullerian hormone results — it was a crazy week at work and I didn’t want to add to the madness if the news was bad.

Good call.

I heard back from the fertility institute within an hour of calling today. And it seems my AMH level is poor … 1.4. The doctor is in Tallahassee and will call Monday to discuss plans/what this means, but they told me the number over the phone. Depending on which AMH scale they used, it’s either poor/low or basically menopausal. Waiting for the nurse to call back and clear that up.

I knew at 23 that my ovaries were starting to age; they could see it during surgery, but my reserve was good then. But I also had two ovaries still.

Did I miss my “chance” after all?

Am I a 30-year-old who blogs about this now?

They had these bracelets at the check-out desk at the fertility institute; I was upset when I saw it at first. Now I wish I had taken one. What I hope for … I’m still not sure.

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I was going to go to the driving range, but now I’m feeling pretty dizzy … may be a day to stay home …

**UPDATE!** The nurse already called me back, and the scale they use is ng/mL. So my number for AMH is 1.4 ng/mL — not a 100 percent disaster, but still not good.

The nurse is of course careful to remind me that there are other factors at play as to what this might mean: my age (which is young!), previous infertility (facepalm), and the number of follicles he could see on my ultrasound without stimulation (it was about 4 when I saw this doc for the first time). But still … there’s a big difference between 1.4 at age 41 and a 1.4 at age 30.

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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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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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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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The 2013 Endo Challenge: A prep for Endometriosis Awareness Month

Holy hell, folks.

It’s the end of February. Which means it’s almost March. Which means (you maybe guessed it): Endometriosis Awareness Month is here again!

It’s a celebration of US, y’all. (Found on Google Images using Creative Commons license filter)

In previous years, I’ve tried to blog every single day for Endo Month. Sometimes that’s worked really well; other years, not so much (i.e. I’m still trying to get over the fact that I abandoned ship in the middle of the month in 2012 after a traumatic gyno visit, about which I *still* have yet to talk to anyone about).

This year, I’m going to take a different approach that I think we all will enjoy: More articles, more reblogs from other awesome endo folks, more photos – maybe not every day, but certainly no blogging famine either.

And in that spirit, I present to you a challenge. THE 2013 ENDO CHALLENGE, to be specific.

Here’s what I want from participants in the Endo Challenge: Set a goal, know why you’re setting it, and then go ahead and do it. Blog about it, tweet about it, post it in the Endo Sucks! group, email me about it — however you want to communicate it so we can share together.

For example, my first Endo Challenge for myself: NO MORE SODA. No sugary drinks, no sugar-free drinks. I don’t know how many more articles and charts and studies I have to see before I give up the ghost and admit the negative effects my caffeinated indulgence can have: cellular damage, the terrible effects it can have on metabolic rates and sugar spikes, inflammation, the unsavory effect it has on your teeth …. UGH. As the many 2-liter bottles around my desk can attest, we drink way too much of it, even if I work a night job. I’ve given it up before, I’ll survive. I’ll just have to take up Water Joe again when I really want caffeine!

I’ll start there, but how will you challenge yourself this month? Here’s a few ideas from the top of my head:

* Start a positivity journal. Write down something good that’s happened to you every day, to remind you that you are living a life, not just a life with endometriosis.

* Participate in a local endometriosis awareness event. For example, The Great Endo Balloon Race 2013 is a way for endo survivors worldwide to pick a day to hand out yellow balloons to strangers, doctors offices, hospitals — pretty much anywhere — and attach information about endometriosis to it, as much or as little as you like — a definition and a URL of an endo blog or a group like the Endometriosis Research Center, the is a good place to start. They also have tips on more eco-friendly balloon choices and other ideas. Join the group and tell them Endo Sucks! sent you! :D There’s also races, meet-ups, the endo quilt — possibilities abound!

* Get in touch with an endo group. Most countries have endometriosis associations; just check out how many I follow on Twitter or what groups have pages on Facebook, or just Google it! Don’t have one? Consider starting one. Small steps lead to great journeys. The ERC is one; other places to start include the Endometriosis Foundation of America and Endometriosis.org.

* Make a change. Change your exercise routine. Start an exercise routine. Eliminate known food triggers from your diet and see how you feel. Drink more water. Eat less gluten. Again, it’s amazingly up to you. Be sure to give diet changes at least two weeks to judge their efficacy and change one food at a time so you know exactly which food is or isn’t helping.

* Talk it out. Make time for this. Talk to your mom and ask her about her experiences. Talk to your friends and make them know that they need to meet you a little more than halfway when it comes to what you can and can’t do with endo. Talk to your partner and gently explain how you feel and what you need from them when you have an Endo Day. Post to the Endo Sucks! group. Talk to a counselor. Unburdening yourself and educating others is a great way to find support you may never have known was there. Don’t be afraid to ask for what you need!

* Do your research. Did you know many women with endo also have Interstitial Cystitis, and some of your pelvic pain may actually be bladder pain? Did you know the company that makes Mirena is coming out with a smaller IUD called Skyla that is supposed to be better tolerated by women who’ve never had children, and can help with adenomyosis pain? Challenge what you think you know about endometriosis and related conditions, and know that doctors work for YOU — you have the DUTY to ask as many questions as possible and explore every avenue of treatment.

* Ask your job for Intermittent FMLA. This is something I believe every single working woman should do. The Family Medical Leave Act offers Americans specific, paid protections of their job when it comes to surgery, chronic conditions, maternity leave and caring for others — but they may not come out and say “Hey, did you know you can fill out the FMLA form, get Intermittent FMLA, and have your much-needed endo days at home paid 50 percent by FMLA and 50 percent by your paid time off?” My job didn’t. You don’t have to tell them WHY you need an Intermittent FMLA form — just sit down and ask for one. You’ll need your doctor to sign off on it, but it is SO worth it. (A guest blog is coming soon on this topic!)

* Take time for you. Dare to take good care of yourself. Get a massage. Don’t get out of yoga pants all day if you don’t feel like it. Treat yourself to a movie. Learn to make a new favorite meal. DO FOR YOU and don’t take no crap from nobody.

That’s what I can think of for now. Leave me a comment and tell me what YOUR 2013 Endo Challenge will be — and if you have a blog about it, please link to it in the comments!


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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.