Tuesday 9 February 2010

We interrupt this blog...

for an important issue, not just for Endometrioisis sufferers (as it may first appear) but to all those who care about careful research and dedication to providing correct information in widely read media formats.

My friend Jeanne of Chronic Healing fame brought this article to my attention at the end of last week. Whilst the importance of pelvic examinations and the listening skills of the doctors we see are of utmost importance, the doctor who wrote this (a GYN no less) needs to seriously look into the research and knowledge behind Endometriosis and its diagnosis and treatment (not to mention that for cancer patients). It is a well-known fact amongst Endometriosis patients that the only way to know for sure if you have the condition is through a laparoscopic procedure. Ultrasounds and pelvic examinations will not easily diagnose the condition as this doctor suggests - I wish it were so simple because twice now I have been told for years that there was nothing wrong with me, and pelvic examinations and ultrasounds seemed to confirm this diagnosis. However, following surgery, both times I had to have multiple internal organs disconnected as scar tissue and adhesions had stuck them together. How such a thing is missed on an ultrasound scan must clearly show that surgery is needed to diagnose this condition, yet this particular doctor seems to be completely unaware of or disinterested in this fact. And there are far too many doctors out there like this, which explains why women with Endometriosis spend an average of 9-10 years in excruciating pain or battling infertility before they find out what is wrong... too many years to be told by a doctor that "some women are just like that" and that "you just have to put up with the pain"... and this is pain that can make you pass out, throw up and have hallucinations from the fever it can induce!

But even more dangerous is the fact that this doctor writing the article suggests that cancer could have been diagnosed or "found" through a simple pelvic examination. Surely he must know that to be absolutely sure a combination of tests is best. It is all too scary to think that doctors are happily misdiagnosing patients, but even worse is thinking of women who may, as Jeanne did, come acorss this article by putting "Endometriosis" into a search engine and believing the article to be trustworthy.

Now here is the worst part... several of us wrote comments regarding the article, only to find that comments were closed after only a handful of them were "approved". A retraction was not granted and the editor has yet to reply to letters sent direct. Following Jeanne's example, I felt this needed a mention and so am hi-jacking the blog for one more post to bring this to the attention of any readers I may have. I am nothing if not passionate about helping create better healthcare for patients, especially when I know first-hand the pain and suffering that a particular condition can cause. I am sometimes far too open for some people about my Endo, but having opened up and realised that it was other people's problems when they got embarrassed by the conversation and not my own, I found that many people were receptive and even had or knew someone with Endo themselves. Too many women have or know someone who has Endo, which can quite simply ruin a woman's life at times (and her partner's when he has to deal with the fallout from the pain, emotional and physical), and yet the condition is still so unknown.

I shall get round to adding an Endometriosis awareness badge on here sometime soon and plan to resurrect my "Writing the Pain" series about living with chronic pain, as well as bringing some more spiritual series to the blog. It is time I wrote about what I am passionate about and this marks the beginning of that.

If you feel like doing something about this, please do visit Jeanne's blog, the article, sign the Endometriosis Awareness petition or check out any official site about Endometriosis in the country you live in to learn more about what any one of your female friends may be silently suffering.

Thanks
xx

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