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


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The battle for the orange bottle continues

English: This is a picture of a Walgreens pres...

This is a picture of a Walgreens prescription bottle. It is not mine. Personal information about the patient is censored. (Photo credit: Wikipedia commons)

If it’s not one thing, it’s another!Ladies and gents, always remember that YOU are your own best advocate and you must be diligent when it comes to your health care. I called Walgreens’ automated service this evening to check the status of my refill orders. I’m glad I did before I got there, because I was surprised/pissed to find they were trying to charge me $160 for FOUR (1-2-3-4) Relpax pills for migraine. Thankfully the fix came easy this time: I called the pharmacy and found that, for some bizarre reason, they had run it through some random coupon program and not my insurance, causing it to be rejected. But I was assured that it will be its usual $10 when I pick it up tonight.

Sadly, this is not the first time for me or for any of you, and it will not be the last. While I know Walgreens staff are humans too, I can’t tell you how many times I’ve had to fix something with them. They fill the wrong med even though I use the automated system and enter the prescription number myself. They don’t send refill requests. They give me someone else’s medicine and give mine away. They’ve asked me out loud, in front of other customers, why I’m taking birth control. And they frequently run medications incorrectly so that insurance at first doesn’t cover it until I tell them, ask them, fight them, beg them to re-run it.

Not that  insurance is innocent: They’ve put up more than a few fusses and tried to charge more or refuse coverage on different medications, but will pull back and charge the co-pay amount when I’ve pushed back. You never accept a first offer, and you must never be afraid to push back for what you need or when you know something is not right — and even if you don’t know for sure, you ask, question, verify. Don’t just trust that everyone is doing their job to a T; make sure of it.

Your time, money and health are yours, and they are precious. Live it and love it.

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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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I think this about sums up endometriosis.

It pretty well sums up my day as well. You might as well be useful to me if you’re just going to be sitting there, pills.

But I need help picking which one of these is your favorite! So far the favorite seems to be No. 2, but I’m taking all input, y’all.


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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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Osama bin Laden and the First Visit Jitters

Left work at 2 a.m. today, marking a 12-hour shift punctuated with three hours of newsroom mayhem as first the news that President Barack Obama was going to speak broke, then mutterings about Osama bin Laden, then frenzied conjecture, and the confirmation shortly followed by Obama’s speech to the world: bin Laden is dead and “justice has been served.”

Like a boss.

Like a boss.

As if that news (and a system malfunction) isn’t enough to keep you awake at night with leftover adrenaline, the prospect of seeing a new primary care doctor for the first time certainly will.

It’s a new thing for me: a serious attack of White Coat Syndrome and First Visit Jitters.

I’m going to see this new doctor based on a suggestion from a friend who is her patient. I really feel like the disdain and bad attitude at my former doc’s office is something I can’t go back to. But the thought of hashing out my medical history, dragging in those pill bottles and talking about them one by one, trying to explain where I’m coming from and how I feel … it’s actually exhausting. I’ve never had so much anxiety about going to a new doctor. Usually I just think of the usual “forms-history-don’t check my weight plz” as a run of the mill pain in the butt, and repeating your story over and over is tiring. But this has had my stomach in knots, to the point where I’ve considered canceling the appointment.

But I don’t have any options left. No pain meds, more pain, questions about this weird and sudden breakout I’ve been having … yeah, I should probably see a doctor.

Plus I’d be charged $50 for canceling now. And that is the line.

So grateful that my boyfriend is going with me for support. Will let you all know if I get any sleep tonight … or any help in the morning.


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A rough morning

Nothing like a doctor waking you up with a phone call you don’t want to hear to ruin an otherwise lovely Wednesday morning.

On Thursday, my PCP decided to put me on oxycontin rather than refill fiorinal with codeine while I also take esgic. (Fiorinal and esgic both have caffeine, butalbital and an analgesic, but fiorinal has codeine; both contain different amount of the ingredients and are taken for different levels of pain.)

His reasons have been creative and varied, and he and his assistant require constant reminders about which is which. This is the same MA who constantly calls in the wrong medication to the pharmacy. His reasons have been “it’s too much caffeine”, “I don’t want you addicted so try oxycontin (!!!)” and (via his assistant) “too much butalbital.”

I called him later in the day Thursday telling him I’m not comfortable taking the oxycontin and I want my regular meds. At first the MA says he’s going to write it and takes down the info so she can call it in, then puts me on hold and comes back 10 minutes later with more of an attitude and a rejection. He’s not comfortable writing the two meds, she says. She sighs and adds, “You know, I really wish you had discussed this with him while you were here. What were you talking about? I thought you were discussing this.” Fuck you, it’s none of your business, I think. “We discussed plenty,” I tell her just as sharply. “But I’m the one that has to take it and I’m not comfortable with it.”

She assured me he’d call Monday and we’d discuss it further.

Which brings us to 10 a.m. this morning. Continue reading