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