HEALTH & WELLNESS ADVOCACY
I will be adding more here on advocacy for endometriosis, adenomyosis, vulvodynia, vulvar vestibulitis, and other invisible and chronic illnesses.
There is such an enormous lack of understanding when it comes to invisible illnesses, especially those that most often or only afflict women. For various reasons, those in the medical field are often just as uninformed as the general public. Misinformation and delayed diagnosis is rampant and can have drastic consequences to health and life.
As someone who deeply understands these issues, I strive to help educate others looking for accuracy and support. I'm currently working on a guide to surviving endometriosis. More will be coming soon!
For now, here are some resources that I've found to be helpful. As you dive in, please know there is hope. I struggled for decades, and while things aren't perfect, by finding the right doctors and the right treatments I have vastly improved from all of the conditions that I list above. If I can, I really believe there is hope for you, too.
Marching at the Worldwide Endo March with fellow warriors, 2018
Top row: Marching with my husband and little warrior, 2019
At the march with Dr. Matthew Palmer, 2019
Group at Worldwide Endo March, 2019
These are some trusted resources where you can find accurate information on endometriosis and its related conditions.
A couple of examples of groups who offer support and are working to improve awareness here in Minnesota include Midwest Endometriosis Association and MN Endo Warriors. With a bit of online searching you'll likely be able to find advocay and support groups in your area as well.
Even if you can't find group support in your immediate area, there are lots of opportunities to connect with others online. These are support groups through Facebook where you can talk with others who understand what it's like living with these diseases. Finding others you can talk to, ask questions, share insight, experience, and personal stories can be incredibly helpful:
Endometriosis groups:
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Nancy's Nook Endometriosis Education
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EndoMetropolis
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Life After Excision
I've also found these helpful:
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Adenomyosis Support
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Vestibulectomy Surgery and Vestibulodynia Support Group
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Vulvar Vestibulitis Syndrome (VVS) & Vulvodyniaa Awareness
For specialty in endo and adeno, you can search for doctors in your area by joining the education focused group Nancy's Nook and review their list of recommended physicians. Doctors I would personally trust that are in my area include:
For specialty in Vulvodynia and Vulvar Vestibulitis/Vestibulodynia, you can search for doctors in your area by joining the National Vulvodynia Association.
With the help of the The Endometriosis Foundation of America the Midwest Endometriosis Association is working to make menstrual education mandatory in Minnesota. If you haven’t already signed, please do! *Click here* Together, we can change the lives of the next generation of people in Minnesota with endometriosis.
You can refer to my past blogs and articles for insight, information, and additional resources.
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Beating Endo by Iris Kerin Orbuch and Amy Stein
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100 Questions and Answers about Endometriosis by Dr. Redwin