And this is how I feel about that:
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As my fellow endo-suffers understand, one of the worst aspects of this chronic disease is that so little is known about it. Partly this is due to the fact that it effects women and not men (in the past women were told the pain was all in their heads), it can only be officially diagnosed by surgery, and, happily, it’s not terminal. Endometriosis can be “just” excruciatingly painful and debilitating, leave a woman infertile or, like me, send you into the hospital for emergency surgery because of a ruptured endometrial cyst.
Most doctors don’t know much about endo, so it’s often misdiagnosed. For much of my teens and all of my 20s I was told I had IBS and to stay on birth control to manage the pain of my period. I self-diagnosed the disease about three years ago and it was confirmed this summer during my emergency surgery. But even after surgery, no medical professional could tell me much about endo. So again I got busy on the internet and read lots of books.
A few years ago I started myself on a fairly rigorous anti-inflammatory diet. It’s about 75% vegan (I’ll eat fish sometimes but no dairy and no other meat), gluten-free, sugar-free and alcohol-free. Apart from when I travel, I stick to this diet pretty religiously. I tried anything holistic that I thought might prevent more pain: acupuncture, herbal tinctures, eliminating chemical products in the house and what I use on my body, meditation, yoga. It all helped my stress at times, but usually didn’t make much difference in my pain (it did clear up my IBS symptoms though so I still stick with it).
This summer when I landed in the hospital for two weeks, I was so mad. I did this diet thing! I had needles stuck in me! I meditated goddamnit! (Maybe I haven’t just quite reached a place of nirvana just yet). I was and am also so very fearful. In the hospital there were moments when the doctors had no idea what was wrong with me and Matt thought he would loose me (thinking of the fear in his eyes even now makes my brain numb). The most unfortunate aspect of my hospital stay is that my emergency surgery didn’t “fix” me. Many endo patients will have anywhere from one to 25 surgeries during their fertile years because even though they try to remove as much of the endometrial cells as they can, usually they don’t get them all. So, eventually, the endometrial cells left behind will grow and cause pain and potentially more cysts, which usually leads to more surgery.
Of all happy coincidences, it just so happens that some of the top surgical endometriosis specialists are in Atlanta at The Center for Endometriosis Care. They are much more aggressive in their treatment of the disease and because this is their specialty, they know exactly what to look for and where to look for it.
When I left Scotland to visit everyone in Atlanta for the holidays and then spend a month in Seattle, I had no plan of having another surgery done before returning to the UK. I still have painful flashbacks to what I think of as hospital PTSD from this summer. But when I met Dr. Sinervo in early January it was the first time that a doctor didn’t blow off my symptoms or give me a helpless blank look when I asked about how to move forward living with this chronic disease. Okay. Let’s talk. Even if that talk involves googlygooglygoogly (aka scary times).
I’m equal parts terrified, hopeful, bewildered (more surgery? really?!), but c’est la vie, eh? This journey has been about love and surrender and learning. One foot in front of the other. Breathe.
Dear Cath and Readers,
Thanks for listening to me ramble about my health. I wasn’t sure if I wanted to write about any of this stuff because I still haven’t come to terms with a lot of it: the fear and pain I still remember from this summer, having another surgery done so soon, and what does it mean afterward? Cured? Healed? None of the above? But one of the things that helped me the most when I was doing my obsessive Googling for endo info was hearing other women’s stories. They are all different — no woman seems to experience endo in the same way — but it was comforting to feel not so alone in these varied experiences of suffering.
And I know suffering is not a very schnazzy topic for a lifestyle/fashion blog, but thank you for sticking with me/us through this.
Much, Much LOVE,