How did endometriosis impact your mental health?

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The depth of endometriosis impacts goes beyond physical health. And many studies have confirmed that endometriosis also influences patients’ mental health. For example, those with this disease might suffer from anxiety, depression, and other mental health issues due to their battle with endometriosis. But despite the significant burden of mental health issues, not many patients and providers are aware of its presence and impacts. We invite you to anonymously share your understanding and experience of mental health and endometriosis. Please use the link in the bio.

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Thank you for opening this conversation. I’d like to mention that it’s really important – especially for healthcare professionals – to understand the dangers endometriosis patients risk when they share openly about this topic. Sadly, endo patients are regularly refused diagnostics,
refused referrals to expert surgeons, refused less invasive imaging over traumatizingly painful penetrative exams, refused pelvic floor physical therapy, refused palliative care options, and even refused a simple collaborarive conversation about what options are available beyond birth control. In my experience as an endometriosis patient, by far the most common justification we are given for such refusals is that women are simply “emotional” or “anxious” or “stressed”, and therefore our health concerns do not justify any further medical options. Given this clear reference to sexist female hysteria, endometriosis patients often very consciously choose to refrain making *any* mention of the negative effects endometriosis symptoms have on our mental health, because it’s already been made clear to us that disclosing such symptoms will be used to bolster the justification for refusing us the very healthcare we require. So many of us with severe cases cannot take such a risk, especially when we have good reason to suspect the disease may be threatening the salvageability of a kidney, or our bladder, or even a lung. Getting medical care to safely remove the disease has to take precedent – even if it means keeping the mental toll of the disease secret as we fight for appropriate healthcare.

As important as this topic is, I stress that equally important is the principle that mental health challenges should NOT be used as a reason to deny medical care to endometriosia patients. (Personally, I believe it’s profoundly unethical that gynecologists are not trained to understand how their own internalized sexism can affect the quality of care they provide.) In fact, proper medical treatment of this disease has a high potential to aid with or resolve the accompanying mental health challenges, because the mental health toll is a RESPONSE to the trauma of untreated endometriosis and its symptoms.

*I suspect icarebetter also understands this. Thank you for your work, and for providing this forum.

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Endometriosis impacted my mental health by giving me Anxiety over any/all new symptoms that I experience now. I was told I have PTSD from my 1st botched (traumatic) surgery and sometimes experience flashbacks leading to panicky feelings. I pick at my nails,skin,hair when anxious/stressed.  Nervousness/Anxiety heading into any new doctor visits due to misdiagnosis/dismissal & worry the medical system will fail me again! Constant worry that medical professionals won’t listen, take me serious, help find answers, shrug me off with lame excuses or shove meds at me!!

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