It's National Selfie Day! I tend to not share self photos because I feel like I look haggard so much of the time...a consequence of chronic pain and disease. But today is different. I feel like my face shows peace.
I am at home and doing very well, resting after endometriosis excision and a hysterectomy for adenomyosis. I couldn't have asked for a better doctor and I felt so supported and safe with him and his team. He said it was a very complex case, 10 on a 1-10 scale. This surprised us both, even though my pain has been excruciating and ongoing for more than 20 years. This unexpected reality was partially because my previous doctor had told me that I had stage 1 endo. He believed that he had taken care of it through ablation (burning) and told me I didn't need to worry about it anymore. But the truth is that ablation only removes a portion on the surface, like an iceberg, and much of what was there wasn't even recognized as endo, so was left entirely behind. My case was actually stage 4, deeply infiltrating the bowl, ureter, and other widespread areas.
While this may sound like I had an incompetent doctor for my first surgery, that's not actually the case. The fact is that endometriosis treatment takes very specialized skill to be properly done, and that fact has not been accepted by the field of medicine yet. Adenomyosis is equally (if not more) difficult to diagnose and is often similarly dismissed. While my past doctor may be a great OBGYN, that does not equate to being a skilled endometriosis excision specialist.
I have lived with symptoms tied to these conditions for more than 3/4 of my life. Lack of understanding has caused it all to be dismissed by doctors, society, and myself nearly every step of the way. When dealing with invisible disease, it becomes hard not to feel like a hypochondriac. I am far from the only one to have struggled in this way. In fact, it's estimated that 1 in 10 genetic women have endometriosis. The statistics for adenomyosis are unknown at this time. Misinformation on these conditions is rampant and funding for research is sparse. I hope the the tides will soon turn.
This year has personally been filled with a great deal of research and the findings from this surgery are incredibly validating. My case is one example of why educating yourself is so important. If I hadn't become more informed with self-sought knowledge, I would have stuck with my previous doctor for a second surgery, coming to the same lack of results.
Finding quality research, online support groups, and a very skilled specialist has, hopefully, changed my life from here on out. Between endo excision and adeno removal through hysterectomy, I have grand new hope for my future. I hope someday this becomes the norm for all women struggling in this way, instead of something that needs to be fought for. 💖
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I'll end here with something I wrote on my way in to the hospital this morning in case it is helpful for anyone who may be having trouble putting their own experience into words: It's surgery day. Leading to this point, I've researched and gone to doctor appointments, cleaned, cooked, cried, hugged, played in the sun, over-thought, ignored, asked questions, read books, answered questions, and received well-wishes and judgments alike. After an almost 12 hour workday yesterday, I left feeling a lot of things: proud of myself for the kick-ass job I've done over the last few months to get ready for this moment, but also a bit like a failure for not finishing everything I'd needed to, both at home and at work. Still, that gave me the chance to let go even more, of my need to be perfect and in control. It pushed me farther to ask for help, which often feels like such an impossible thing to do.
As I drove home I also felt a confusing combination of excitement/hope and grief. I had a hard time pinning the emotions down at first, though. So I talked out loud, moving energy in a kind of prayer. Tears swiftly followed.
This was grief over a life of potential that has, until now, been lost. It was grief for the 14-year-old me struggling to get through school days, who pushed through the horrible pain quietly anyway, as I still do. It was grief for 15 years of marriage spent celibate. Grief for an adventurous spirit squashed from limitations of a struggling body.
I now hope for the potential of a different future. Today is Summer Solstice and I imagine the sun shining on and blessing the events of this day for me and the journey others are on as well.
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UPDATE: A little over a week ago I had surgery for excision of endometriosis and hysterectomy for adenomyosis. The same day of my surgery I learned about someone else who had been suffering with endometriosis committed suicide after being dismissed during an ER visit, a dismissal I myself experienced 20 years ago. I could understand her desperation. I'd lived it as well for decades. Yet here I am, fresh out of surgery, holding onto new hope. The contrast has been jarring. If only I could have passed along some of this newfound hope to her. If nothing else, this is one example of the desperate need for better awareness and treatment of these conditions.*
Resources
Blogs:
Previous posts I wrote explaining these two conditions may be a starting point...
Books:
Beating Endo by Iris Kerin Orbuch MD, Amy Stein DPT
100 Questions and Answers about Endometriosis by Dr. Redwin
Support Groups through Facebook:
Nancy's Nook
Minnesota Endometriosis Nook
Adenomyosis Support
EndoMetropolis
Resource for finding a specialist:
iCareBetter
*If you are contemplating suicide, PLEASE talk with someone. One possible resource: National Suicide Prevention Lifeline 1.800.273.8255
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