Horace is Made of Chocolate

 

When I first came clean about my various health woes back in January, I promised this wouldn’t become a sad sack sick girl blog… and I’d say making you wait almost five months for an update achieves that goal.

So here’s the word: Tomorrow morning, Horace and all his little cyst friends are getting cut out.

I’ve been consulting with a fancy gynecologist who specializes in hard-to-treat ladyparts like mine for the past several months. We’ve tried the Pill — a low-estrogen version that isn’t supposed to interfere with my migraines. Horace is unmoved and continues to flare up with waves of stabbing pelvic pain and 12-hour migraines several times a month. The rest of the time, he wakes me up in the middle of the night, hurts when I pee, spasms when I do certain yoga poses and is generally annoying.

So I’ve also had several ultrasounds and they all say the same thing: Horace is an endometrioma, or endometrial cyst, which is a sign of endometriosis.

For the uninitiated, endometriosis is a currently incurable medical condition where your endometrial lining (that’s the bloody part of your period, sorry for squeamish types) grows outside of your uterus, in places where it’s not supposed to be. It can build up into lesions, adhesions (where it sticks bits of your insides together like really icky, painful Velcro) or cysts. I now have at least three of those: Horace is actually “complex,” meaning he’s two cysts stuck together, plus he has a buddy on my right side.

For some reason — I guess they way they look all dark and smooth on the sonograms? — endometrial cysts are also known as “chocolate cysts” in the medical community. I think this is proof that A) the medical community has a crappy sense of humor and B) has never seen or tasted chocolate.

To be clear: At the moment, the only official way to diagnose someone with endometriosis is to cut them open and take a look-see. So I’m “presumed endometriosis,” until my gyno cuts me open tomorrow and peeks inside. Endometriosis does bring with it some big, scary implications like the Cleveland Clinic’s helpful assertion that 30 to 40 percent of women with the condition are infertile, making it one of the top three causes of infertility in the United States. I have a lot of feelings about that. But right now, we’re mostly focused on Mission Make the Pain Stop. 

This surgery won’t cure said endometriosis — my body could decide to make some new Horaces whenever it wants — but it’s the best shot we’ve got at Mission Accomplished, for at least a few months, maybe a few years, and maybe longer.

So right now, I’m excited. Cautiously so; I’ve been excited before about treatments for both Horace and his migraine friends and then brutally disappointed when they didn’t pan out. (Things that have disappointed me even though other people swore they were The Best Ever: Acupuncture, chiropractors, physical therapy, lots and lots of supplements, even more drugs and so on.) And this, for sure, is the most aggressive step I’ve taken to get this situation under control, so it’s going to be uber-frustrating if I end up back on the heating pad, screaming into a pillow, in three months’ time.

But it’s nice — empowering even — to feel like I’m a little closer to understanding this whole situation. It always seemed obvious to me that there had to be a major hormonal component to my migraines, but nobody was really dealing with that aspect. Now, some dots have been connected.

And this brings me to my bigger point: Why am I over-sharing all of this with the world wide web? Not because I expect this to help lots of other women diagnose their own endometriosis — although the disease does take forever to get diagnosed correctly. I’m not a doctor or an expert on this condition by any means so I’m not qualified to have that sort of input on anybody.

I’m sharing all of this because I think part of having a good body image is understanding your body — and it’s crazy to me how poorly we understood women’s health issues like migraines, cysts and endometriosis and how many myths and misconceptions circulate about these conditions and the type of people that get them.

I’ve worried a lot that writing about chronic illness would hurt me professionally — no one wants to hire the flaky sick freelance writer — or personally — no one really wants to get drinks with the flaky sick girl either. But the fact of the matter is, dealing with chronic pain hasn’t made me flaky. It’s made me more focused, both in terms of the work I want to be doing and how I want to spend my time (and who I want to spend it with) when I am feeling good. It has also meant realizing I can’t control everything, paring down, saying no when I would have preferred to say yes, forgiving myself for not answering every email on time and hoping the world will forgive me too — but I’m not so sure these are such terrible lessons.

Unfortunately, flaky is just the beginning of the not-so-nice associations with these sorts of “female troubles.” There’s also hysterical, unstable and just plain making-it-up (see: The doctor who told me I “couldn’t possibly be in as much pain as all that.” Yeah. We loved her). On a case by case basis, I get where these stigmas come from — people being driven crazy by pain can seem, well, crazy. I find myself doing this uncontrollable-tears thing on the phone with my gyno’s secretary about twice a month which, I’m sure, totally makes her day. Plus even well-meaning medical professionals just get frustrated because it’s hard to feel successful with a patient who doesn’t get better. My gynecologist is nationally ranked and working at one of the country’s best hospitals — he shouldn’t be shrugging helplessly and describing endometriosis as “mysterious” when I ask him how likely this surgery is to fix anything.

But big picture: The reason women like me seem crazy is because we’re having to live with sh*t that nobody can accurately explain or fix. And the reason my doctors are so stymied is because these conditions have been dismissed forever and ever — by doctors, researchers, pharmaceutical companies, employers, men, other women, society. Enter the vicious cycle.

One in three women will experience migraines during her lifetime; 8.5 million American women have endometriosis. And millions more have other kinds of cysts, fibroids, or the myriad of other “female troubles” that fall under this umbrella. So we’re not talking about freaky symptoms of the odd hysterical female. These issues are the reality of having a body for a large number of women. 

So on the one hand, I hate Horace. I hate my migraines. And I hate all the ways they f*ck with my life — the fact that I can’t travel for an assignment without packing an artillery of painkillers and a heating pad; the way every weekend is a crap shoot as to whether I’ll get to enjoy myself or have to spend the day in bed; the low-grade way it all vacuums up my energy day-in, day-out because I’m always getting sick, being sick, or getting over being sick; the uncertainties about what’s coming next for me.

And I’m excited and cautiously optimistic that this surgery will represent a turning point for the better — no more Horace will mean nothing to trigger crazy hormonal flare-ups and migraines, at least for awhile.

But I’m not sorry for how this experience has taught me how desperately we need more education, research and awareness about women’s bodies. Because we’re never going to get out in front on this body image business — let alone choice and the rest of body politics — if we don’t take women’s health more seriously. That means asking questions about why this stuff happens and what we can do about it. That means treating these issues — and the women who have them — with respect, not skepticism.

And for me, at least, that means not being afraid to talk and write about what’s happening over here.

Oh and if someone could just figure out how to give Rush Limbaugh or maybe the Arizona State Senate an ovarian cyst or five, we might make some real progress.

PS. If you’re looking for more specific information about any of this stuff, here are some resources that I’ve found helpful:

[Creepy endometriosis vs. regular uterus picture from here – not a site I'm endorsing as a medical reference, btw, just thought it was a handy illustration.]

 

Filed under Happenings, Health, Sick

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14 Comments

11 Comments

  1. Posted May 29, 2012 at 3:15 pm | Permalink

    Best wishes for successful surgery, Virginia. I hope everything goes well for you tomorrow. Thanks for writing this, and thanks for the shout-out to re:Cycling!

  2. MC
    Posted May 29, 2012 at 5:08 pm | Permalink

    Good luck with the surgery! I appreciate the explanation of the intersection of having lady-parts problems and good body image, because I have very painful (nausea-inducing) periods.

    It is very interesting that I can get more support and understanding for my mental health problems than my lady-pain problems.

  3. Guin
    Posted May 29, 2012 at 8:28 pm | Permalink

    Good thoughts and wishes for the surgery. I have it, since I was 16 (which, try to get a doctor to take you seriously at that age that something is *wrong* and you’re not just being a whiny baby). I had surgery and it helped immensely. IMMENSELY. They found it on the muscles of my back, it’s so gross. I have been on hormonal BC for many years because it keeps the pain and spread at bay for the most part. But it’s nothing short of agonizing, horrifying pain for days out of the month without treatment. I had no idea the number of women that also had it until I read your post. The more we talk about it, the less stigmatized it will be. Thank you for that and all you do.

  4. Sarah Burns
    Posted May 30, 2012 at 12:26 pm | Permalink

    V, I was SO glad to read this post.
    I hope you feel much better soon!

  5. Posted May 30, 2012 at 12:26 pm | Permalink

    You are my hero, VA. You bring the bright lights for lady issues that have been in the dark for too long! Hoping all goes well tomorrow. xx

  6. Jennifer
    Posted May 30, 2012 at 12:42 pm | Permalink

    Best of luck to you. I admire your bravery in posting this! Just wondering if you had read “Women’s Bodies, Women’s Wisdom” by Christine Northrup. It offers a holistic and body-positive approach to dealing with these difficult issues.

  7. Lynne Powell
    Posted May 30, 2012 at 6:22 pm | Permalink

    I hope the surgery went well! Thinking of you today!

  8. Posted May 30, 2012 at 8:09 pm | Permalink

    I beg to differ on the “with far more grace” business. ;) Though I have definitely thought about sending my endo clots to my state senators. (Well, not mine since she’s awesome. But other state senators in Arizona.) However, shipping bodily fluids apparently violates US postal regulations, and I wouldn’t want to do that. :P

  9. Posted May 30, 2012 at 11:35 pm | Permalink

    I hope the surgery went well! I think you make a wonderful point, and a connection that we don’t often think about. Body image isn’t just about how we look, but understanding how our bodies work, why they look the way they do and act the way they do. For so many years women’s bodies have been used by people who did not own them: husbands, governments, rapists, etc. And now we are beginning to regain ownership and information, but the process is slow. We need to educate ourselves and others.

  10. Posted May 31, 2012 at 7:32 am | Permalink

    Like others, I hope the surgery went well and that it gives you some relief. It’s still mind-boggling to me that so many women can have a condition like endometriosis and yet so little can be known about it. A lot of the patients at the health clinic I worked at had it and the diagnosis and treatments were a bit like flinging darts at a wall and hoping something would catch, which rarely happened.

    And also thanks for making such a thoughtful, lucid post about the subject, and the day before surgery no less! I’m not sure how you did it. The one time I had surgery – and it wasn’t even real surgery, just wisdom tooth extraction for which I had a general – I was a nervous wreck for two days leading up to the event. No way would I have been this coherent and thoughtful. :)

  11. Stephanie
    Posted June 18, 2012 at 9:30 am | Permalink

    I hope your recovery is going very well. Thank you for sharing this journey with us. It is extremely important to have these discussions out in the open.

3 Trackbacks

  1. [...] Virginia Sole-Smith wrote a frank and touching post about endometrial cysts, and why it’s important to talk about these things. [...]

  2. By Horace & Co Are Gone! on June 4, 2012 at 11:54 am

    [...] « Horace is Made of Chocolate June 4, 2012Horace & Co Are [...]

  3. [...] actually had to go the fairly aggressive route to deal with them and the related issues. There was that surgery, which, alas, is turning out to have mixed results. Plus my neurologist injects my shoulders, neck [...]

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