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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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 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 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?