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Tips for diagnosis process

Hello all. I’ve long suspected I have endometriosis as I have always suffered with terrible period pains and often deal with excruciating pains when exercising. This is really hard for me as I’m very into my fitness and find myself being unable to sign up for comps etc due to fear of pain. These just feel like really bad period pains and can last between 5-30 minutes, but often pass quite quickly and all of a sudden I feel normal again!

I have been given blood tests, internal/external ultrasounds and MRI’s and no indications of endo have been picked up. Both my Mum and my Aunty have endo. My GP has said he doesn’t know what it is and it seems he doesn’t want to do any additional investigations but I’m certain something is very wrong, as the pain can be unbearable at times.

My question is, how do I go about getting further testing to determine whether I do have it? And if I do, can it be treated?

I feel very alone and sometimes embarrassed throughout this process as it is an invisible illness and feel no one gets it.

I’d love to hear whether anyone experiences anything similar with pains being almost exclusively when doing intense exercise, and also personal opinions about whether the process of getting a diagnosis is actually worth it.

Thank you ❤️

  1. Sorry to hear you're going through this! I can't speak to pain occurring exclusively with exercise, so hopefully someone else will chime in here about that. One thing I can say is that exercise creates an inflammatory response, and endo is an inflammatory disease, so perhaps it is being exacerbated by intense exercise.

    I would argue that diagnosis is absolutely worth it, especially because later stages of endo can be dangerous with organ involvement and it's much better to know than to be in the dark. I wish I hadn't waited as long as I did to get care. I'd recommend getting a second opinion since it seems like your current gynecologist is being dismissive. Endo can be hereditary, so the evidence that your mom and aunt have endo is compelling. ~Katrina, Advocate

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