Unfortunately for endometriosis-sufferers that first word is usually PAIN. However, while pain may be the beginning of your endo journaling journey, it does not have to be the end.
The first word I wrote in my endo diary was, literally, pain. Then the dictionary definition. Then in the top left corner I wrote my name etc. (see pix 3 at bottom).
Why put pain first? Trust me, I did not want to; but it had so absorbed my whole life and it was the thing I most wanted to be rid of, that when I started to chronicle my endo issues it was really all about the pain at first.
If I was the heroine of my saga, pain was the dragon to be vanquished. But how? We learn these things from storytelling, right.
In chronicling my endometriosis, I hoped to gain insight into it, enough to help beat it back. Which is not to say that an endo journal should be all bleak. Like any diary, or tale, it would be full of all that adds up to life: the dread, the glee, the bittersweet.
It did what now?
For instance: every time you try a new pain medication make notes on how it made you feel, its side effects, its effectiveness on a scale of one to ten. Then when you talk with your physician, it will help her help you.
I noticed that every time I was administered a pain shot the first and second time I was hospitalised, I would actually experience more pain after. I took note and described it to one of the young interns ushered in each day. She was able to then figure out that since this medication causes muscle cramps, it was actually wreaking havoc on my uterine muscles. So she changed my pain injection med, and instructed me to always tell this fact to any prescribing doctor afterward.
That's how it can work, big or small. You can record what happens to you every time you have a certain type of seasoning, like msg; or food, like lentils. How you feel after yoga versus high-impact aerobics. Then, looking back, you can actually figure out your approach to that thing.
Be as structured or casual as you want, just be sure to make your notes. I believe in writherapy: that putting something down in words helps, heals.
Pretty wise
You'll figure it out, and I'll make suggestions every so often, or your endo-sistuhs in your support group (starting one is a whole other post 😵) can share their ideas among you all.
And speaking of support, remember, there are burgeoning numbers of younger and younger women getting diagnosed with endometriosis, or going undiagnosed. So all these amazing journals, that we manifest now with our empowered selves, can be used to pass on insider information to those who walk in our wake and save them from suffering much of what we did.
How wonderful to know that we can help others by sharing our endometriosis recorded history.
In beauty may you walk
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| Photo 2: Don't shy away from something beautiful, especially because endometriosis feels so ugly |
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| Photo 4: First page entries, after three months of debilitating pain. |
