Newly Diagnosed With Endo
This story is being posted by Ashleigh's mother since she is not old enough to be online, but she and her family are new to Endo and are looking to start a support network for her diagnosis. Ashleigh was diagnosed at the age of 12 after a long road of tummy trouble. When she was born, she had to be bottle fed and would projectile vomit her formula clear across the room. We finally found a formula with added rice that helped her to keep the formula down. Ash she got older, we noticed that she had a lot of pain in her stomach and went from doctor to doctor begging for help to find a diagnosis. After about 10 years, she was finally diagnosed with a dairy allergy that her doctors were hopeful she would grow out of. This was diagnosed by taking ALL of the dairy completely out of her diet and as a pizza lover, that was not an easy task to accomplish. We found someone in the natural foods section of our local grocery store who was able to help us find a lot of substitutes that she could have in place of the things that we took out of her diet. She became a fan of Diaya (sp?) and that was a huge blessing, but on our tight fixed budget, we had to stop the more expensive and yet healthier options of Natural Foods for her. The tummy troubles came back again and when she started her periods at the age of 11, my heart just broke for her because she would double over in pain just screaming. I took her in to our family doctor who diagnosed her with Ovarian Cysts and referred us to an OBGYN who said that that was a misdiagnosis and diagnosed her without any doubt with Endometriosis. My daughter is on our towns swim team and has had to miss almost a full month of swim meets and practices because her period lasted 3 weeks instead of the typical one week. She finally found a sport activity that she absolutely loved and I feel I have had to take that away from her because of this diagnosis and it kills us every day. Where we live, there are minimal limited resources for a diagnosis like this, so we are not sure what steps will need to be taken to beat this. We hope that we can help to get more support groups up and running for people with this diagnosis, because as we have found, there are very few.
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