March was Endometriosis Awareness Month, and I had the opportunity to share my story for a live event at work. My surgeon joined in on the conversation. I'm really proud of how it turned out and I wanted to share the link here to check out! https://www.youtube.com/watch?v=MkqBFeZnazI
Here are the big takeaways from. my conversation:
If you feel like your doctor isn't listening to you about your symptoms- whether it's pain, bleeding, cramps, etc., find a new doctor. I know that there is a lot of privilege in saying this, especially in the States where doctor's visits can be so costly, but endometriosis is such a weird disease. It presents differently in different patients. A lot of OB/GYNs are uninformed about the specifics and their attempts at excision surgery can often do more harm than good. According to Beating Endometriosis, at a 2005 meeting of the International Pelvic Pain Society, the presenter showed slides of pictures of endometriosis to pelvic pain specialists who were told to raise their ends if they saw endo in the images. In some slides, only 15-25% of the doctors present raised their hands. ALL of the slides had pictures of endometriosis, which means that 75-85% of specialists got it wrong. If endo is so difficult to spot that specialists struggle with it, imagine what doctors who aren't trained as specialists miss. Do your research. Find a specialist.
Advocate for yourself. After my first excision surgery, I expected to feel "normal" and have periods similar to the periods my non-endo friends had. That never really happened. I knew in my gut that something else was wrong, and turns out I had adenomyosis too. All of the excision surgeries on the planet wouldn't have helped my symptoms. I needed a hysterectomy to cure the adenomyosis.
Your value as a woman is not solely derived from your ability to have children. So many doctors that I saw were more concerned with my fertility than my quality of life. Even after I assured them that my priorities were different, they imposed their lifestyle choices of having a family onto me. All I wanted to was to not live in pain and bleed through pads anymore. They were unwilling to compromise to improve my quality of life, so I found a doctor who cared more about me than my future hypothetical children.
How great is Dr. Griffin? With all of the horrible experiences that I have gone through with gynecologists, I really hit the jackpot with him. He's kind, he answers questions and he listens to me. AND he agreed to be interviewed for my work event. I wish all people with chronic health issues had access to care from doctors like him.
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