The Condition is Usually Not Serious – and other things not to say to women

funny-stork-baby-birth-control-vintageI’m not going to talk about my diet today. Well, not directly. One of the most important habits I took on when I changed my food was to journal my symptoms dutifully.  It’s great because if I choose one day to eat a buttery glutenous cinnamon roll covered in cream cheese frosting, I can consider in an experiment instead of a failure of my willpower. If I experience cramping or digestion issues the day after, I know my body does has a problem with those ingredients. If I start my period two days later, maybe that craving was a function of where I was in my cycle. I won’t call it PMS.

When your ute makes a demand, you make it happen.

 

No three letters can dehumanize a woman faster than p, m, and s. To say it is a stigma is an understatement. It is an assumption, a dismissal, and a punchline. Women’s menstrual pain is dismissed far too easily, even by health professionals.

You can see the dismissal even in the technical definitions. “Although some pain during your period is normal, excessive pain is not. The medical term for painful menstrual periods is dysmenorrhea”  Some pain is normal? “Dysmenorrhoea refers to painful periods, including severe menstrual cramps. The condition is usually not serious but it can be debilitating” (Menstrual Cycle & Irregularities). After the words usually not serious, no one hears can be debilitating.

I use the MedHelp application. It allows me to be startlingly specific about my symptoms (menstrual, emotional, pain, and nutritional) as well as my treatments (medications, supplements, baths) and have enough data to see patterns that I would not have found otherwise. The part that is especially important for me is their Pain Tracker. 

Seriously.

Because the 1-10 scale with smiley to frowny faces is so crude a representation it is laughable to those coping with any sort of pain disorder. Now I have a journal programmed with important varieties of pain (burning, discomfort, stabbing, hypersensitivity, twisting, cramping) as well as a body map where you can pinpoint the areas affected.

Are your periods normal? Sounds like a simple question. But it’s one that I hate the most at the Dr.’s office. What they’re asking is, Are they 28 days apart and result in moderate bleeding and bloating?  I wouldn’t be visiting a specialist if they were. The real question to ask is, What is normal for you? Frequency, duration, and severity are only three of so many dimensions to consider about the chronic injury that is menstruation.

I was spurred into this post after reflecting on a telephone conversation I had today with a nurse. She must check with my doctor before clearing me for a refill of my Vicodin prescription. I understand.

“Because, it’s highly addictive, you know.”

Yes, I know.

“We don’t want you taking it regularly.”

Yes, I know. I don’t want to, either.

“It says here you were going to do some sort of… pain management… thing?”

Oh yes, I remember. I was considering participating in The Violet Petal Study, a clinical trial of a treatment for endometriosis pain. I’m thrilled that this study has advertisements in the area via radio, TV, and internet. Based on my age and the course of my treatment I am exactly –exactly– the participant they want, and my doctor gave me her full support to enroll. 

But I have decided against it. I am desperate enough to try something experimental, yes. But I’m not desperate enough to gamble on a placebo that 1/3 of participants get. They would allow me to continue Vicodin for pain… but it’s highly addictive, you know.

The American sign language speaks the truthShe asked if my condition has improved and was appropriately concerned when I told her that in the last weeks, my pain has increased. She said she would call in my prescription and genuinely urged me to make an appointment right away, so my Dr. and I can do something about it. I broke a little inside. I was overcome with a feeling of futility all too familiar to women dealing with pain or infertility. 

I knew that rushed appointment would be just like my last in August, and the one before that, and the one before that; I’ve exhausted all my medicinal options, and considering the last time I had health insurance was 2009, I can’t afford to make an appointment, no matter how earnestly the nurse believes it will help (while knowing literally nothing about my history). I wanted to tell her, there is nothing to be done… but I don’t believe that. Once I get medical coverage, I want to explore surgery to remove one or both of my ovaries. But this means, once I get coverage, I have to find a new doctor. Mine refuses to jeopardize in any way my chances of getting pregnant, even though I’ve made it repetitively clear that I’m averse to the whole fiasco.

You’re still in your 20′s, you’ll change your mind. She specializes in infertility, so of course she is going to act in a way that protects my reproductive bits. Motherhood is magical, and it gives fulfillment to millions of people– but it is not for everyone. I’m just one of a growing number of women who are eschewing pregnancy and receiving incredulity and pity instead of support.

Childfree inspiration

The Childfree Life is gaining some public recognition, and I must further that conversation by continuing to say my piece. Armed with my symptom journal, sparked up over the Vicodin talk, and my feet firmly rooted in feminism, I came to write this post. I had to meander a bit, so thank you for coming with me. I’m nearly to the point.

And I am more than my illness.

I finally realized what I need to communicate on behalf of people like myself. When someone says you’ll change your mind, or keep your options open, all I can hear is I don’t believe you, and you don’t know what you want, or you’re not old enough to say that. Don’t protect me. Help me live in good health. Even when (especially when) it is scary and potentially involving scalpels.

Someone who seeks surgery (women like me for oophorectomies, men for vasectomies) is not taking the decision lightly. I have some rough numbers I want to give you, in an awkward attempt to say… forcing me to be able to carry a child is as cruel as forcing me to have one. How old do I need to be before I am taken seriously? Isn’t 35 about when they start saying you’re too old? Let’s go with that, say I wait until I’m 35 to prove I don’t want to carry, that’s 6 years. If my condition and treatments stay roughly the same as the last 6 years, what am I in for?  42 periods, totaling 270 days of bleeding, necessitating 120 Vicodin. Careful, it’s highly addictive, you know. My endometriosis pain is not limited to menstruation times. In addition to those numbers, I’ll face 420 days in pain severe enough to distract me from my tasks. This will require an additional 300 Vicodin. Round it all off with 1-2 laparoscopic surgeries, and what do you have?The fault in our starsCruelty.
Versus: One surgery, potentially liberating me from Vicodin, tampons, condoms, PMS….. oophorectomy is fun to say, but I’ll tell you one thing: it’s not habit forming.

1 Comment

  1. January 22, 2014 at 3:17 pm

    […] Reblogged from Coffee and Curiosity:  The Condition is Usually Not Serious – and other things… […]


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