Why we need awareness #5

March 2009 – Jeanne from Chronic Healing and myself banded together to increase endometriosis awareness. My contribution that month included posts such as:

Endometriosis = cancer?

The Stages of Endometriosis

Estrogen: Fuel for the endometriosis bonfire

A media awareness campaign began: My letter to Noah Kotch @ The Today Show

And Jeanne created a petition to increase awareness that continues to be signed. If you have not, please do sign this petition.  If you are a blogger, please consider adding the petition to your site. Please spread of the news of this post, all endometriosis awareness posts, and the petition through Facebook and Twitter.

Why do I point out what we did 2 years ago?

Despite our petitions and posts, incorrect information about how endometriosis is diagnosed and treated continue to be disseminated in the media. An appallingly dismal amount of research is being done into the cause of this disease. And women continue to be misdiagnosed by their doctors.

Search terms such as “endometriosis suicide” increase in frequency with little recognition from the health care establishment regarding the impact chronic pain can have on an individual. Chronic pain patients presenting with depression are sometimes treated for the depression and not the pain. This can create a vicious cycle in which the pain never ceases, goes severely under-treated, and the depression fails to respond to treatment and can worsen. This is when search terms linking endometriosis and suicide occur.

I should not have to use one hand, let alone two, to count how many people reach my blog every month using the search term “endometriosis suicide”. I should not have to read heartbreaking e-mails from women who are at the breaking point. Women who are turned away because of their pain, because of their need for answers. These women are fed up and tired of the “take this pill, give it 6 months, and call me if you’re still in pain” regimen. These women are tired of their bodies being cut on and disfigured because there is no final solution for this disease.

Their hearts break because of infertility. Their bank accounts run negative because of costly treatments and surgeries. There are stories of lost wages and termination because of excess time off.

But above all, the most common complaint I have found… “no one understands what I’m going through”.

All of that – that is why we need awareness. And we need it now more than ever.

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4 responses to “Why we need awareness #5

  1. We need endo awareness because at 43

    Surgeons won’t touch me due to adhesions
    The doctor that performed my hysterectomy gave up mid surgery and didn’t tell me FOR THREE YEARS
    I am a “burden” to society for being on disability while dealing with this
    My blood pressure is through the roof
    My insurance is a joke-when I am able to be insured-I live in a “pre-existing condition” state
    I am depressed
    I am tired

    • Oh, Lili. I am so sorry you are experiencing such dismal treatment – or lack of. To abandon your hysterectomy mid surgery and not disclose this to you is absurd. Are you, or have you, considered legal action against this doctor? Have you reported him to any national or local medical boards for his lack of disclosure? He must be made to explain why he did not disclose the surgical outcome. To not tell you is unethical.

      Adhesions are a bear. I have had many surgeons tell me they could go in, release them, but they’ll just come back. And likely increase. I know this, and that is why I am against any further surgical interventions on my body for endometriosis.

      I hope we all find the respect we and our conditions deserve in the medical community. And I hope you are able to find a doctor who will listen and help.

  2. Endochick,

    Thank you for giving some context… and showing that endometriosis misinformation continues to be disseminated despite the efforts of many patients to address this.

    The endometriosis awareness petition was actually started in October 2008… following all of the endometriosis misinformation in the press (after two Dancing With the Stars dancers made statements to the press about endometriosis which spread confusion). Remember the influx of blog visitors we got back then? So many were searching on phrases involving questions about HOW endo is diagnosed!

    Thank you for this post. Bit by bit, by banding together and continuing to speak up… we are countering the endometriosis misinformation in our own ways. Every little bit helps.

    It’s so important for each endo patient to ask questions, advocate for herself, get multiple opinions when appropriate, take a close look at organizations claiming to advocate for endo patients (i.e. verify that’s really what they’re doing), etc.

    Jeanne

    • 2008?? Really?? I will change that! Wow, I can’t believe it was so long ago when all that was taking place. It really does seem like yesterday that the effort to stop misinformation began.

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