Why Patient Self-Advocacy is Important
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My mother taught me to advocate for myself. She has advocated for herself, for my sister and I, for our friends, for family, and countless others. Seeing my mother constantly fight for herself and others has given me a desire to do the same.
I'm not my mother, but when I started to "adult" in college, I would try to emulate her. I would ask myself what she would do in a situation, then add in my personality (researcher).
Real-life Application
The Research
When I started my endometriosis/adenomyosis journey, I read as much as I could get ahold of (books, blogs, medical journals, published studies and more). From that info, along with vlogs from women going through their own journeys, I understood what treatments were available, what the medical community knows/doesn't know yet about these conditions, and what specialists do compared to general practitioners.
Was all this information overwhelming, yes! Did I regret looking it up? NO! Why?
Because
- I'm a researcher, and
- I didn’t hesitate to get second opinions.
The Second Opinions
General practitioners opted for an approach involving hormone therapies and laparoscopy.
Gynecologic surgeons brought up the same treatments, but with the additional options of minimally invasive explorative laparoscopy (for endometriosis), ablation if necessary (for endometriosis), or even a hysterectomy (for adenomyosis). One of the offices I went to put "hysterectomy" on my chart at my first consult!
A few specialists had the same mindset as the surgeons. Others used "innovative" robot-assisted methods to achieve "more precise" results.
There were also a handful of specialists (mostly international) that have devoted their lives to studying and working with Endo and Adenomyosis to the point where they don't need robotic assistance for clean margins and optimal recovery. These are the "cream of the crop" doctors and pioneers of this research. They do endometriosis excision (complete removal) surgeries instead of ablation (surface layer/band aid surgery). They are even up to date on all the current treatment methods for having a healthy reproductive life.
Guess which type of doctor I listened to.
Two excision specialists happen to have a practice in Georgia (where I live). They, however, don't take insurance. If I stopped my research there, I’d probably still be paying the surgery off. However, I kept looking and found one that did take my insurance.
In Boston.
After a hoard of shrugged shoulders and doctors not knowing what to do with me, I found my doctor/surgeon.
Conclusion
I wholeheartedly advise you to equip yourself when seeing a doctor for anything. However, I’m not advising that you to trust Google with all your health questions.
If you are diagnosed with a condition that screams something like “hysterectomy” on a bunch of websites as your only true hope, then you might want to do further research.
I hope I have inspired you to be an active member of your care team!
***Side Note: This post is meant to encourage you to be involved in your health care. If you have had a hysterectomy, I pray that you are surrounded with lots of love, support, and an experienced health care team.
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