Chronic Illness Challenge: Day 22

Chronic Illness Challenge: Day 22

Day 22: How do you feel you have been treated by the medical system?

This is definitely a loaded question.

When I was diagnosed with celiac disease, I was given no guidance at all by my gastroenterologist about what to do except go on a gluten free diet. Which, obviously, is the only available treatment for celiac disease. But going on a gluten free diet is hard. You don’t realize how much food actually has gluten in it until you actually look. It was actually my primary care doctor who said she’s noticed it typically takes a new celiac about a year to get the diet figured out. And she was absolutely right. Getting used to what you can and cannot eat, how to cook safely despite the risk of cross contamination, and how to dine out all took getting used to. It’s still hard. But I’ve gotten used to it now. It’s just a part of my life that I don’t have to think to hard about.

As for the endometriosis…haha. When I had my first surgery to diagnose and “treat” my endo, it was ablation, which is not an effective treatment for endo, with a 40-100% failure rate. Then I was offered Lupron or pregnancy as treatment options when the first surgery actually made me worse. Those aren’t treatments, those are band-aids. It wasn’t until I did my own research that I discovered that excision is the gold standard for treating endo and has to be performed by a highly skilled surgeon in order to be successful. And there aren’t many surgeons out there who can do it well; anecdotally less than 100, for a disease that affects 176 million women. It’s a travesty. So you can can only imagine how many women are receiving improper and inappropriate care.

The medical system has truly failed women with endometriosis. The fact that is takes an average of 10 years to get a diagnosis should alarm anyone. We are told by doctors that the excruciating pain is normal. It is not. We are led to believe that pregnancy and hysterectomy are cures. They are not. Endometriosis has no cure. It can only be even remotely managed by meticulously performed excision surgery. End of story.

Not convinced? Watch the video here then think some more. This says everything that needs to be said.

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0 thoughts on “Chronic Illness Challenge: Day 22

  1. So sad to hear of your experiences but unfortunately not surprised ? I haven’t felt supported at all and I think that I was only diagnosed with MS (relatively) quickly because my Dad was a GP and he knew what was happening and pushed it. That was over 20 years ago, I don’t think things have changed much xx

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