Adenomyosis Fighters

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A Plea for Compassion

Recently as I was doing more research for my adenomyosis website, I came across a “support” site for endometriosis sufferers that caught my eye…..not because of great content, but because of a post by the site administrator asking members to stop complaining about their symptoms.  She referred to member comments as “whining/pity party”.  This upset me as I suffered from adenomyosis for 17 years and had to put up with comments like these constantly.  Reading this after hearing Dr. Drew’s ill-informed comments on endometriosis just proved to me that we still have a long way to go as far as educating the general public about these two disorders.

Endometriosis and adenomyosis are not just physical disorders.  They also dramatically impact the psychological health of these women as well.  I encourage you to read a heart-wrenching story of a young girl named Kristi who committed suicide because she could not get effective treatment and could not take the pain anymore.  You can access the article at http://www.kokomoperspective.com, and the name of the article is “So No One Else Will Suffer”.

Dealing on a daily basis with chronic, severe pain is tough enough.  But to have to listen to others write you off because you can’t obtain an accurate diagnosis creates immense additional distress for the sufferer.  When I began to have symptoms, I lived in a very small town with limited medical care.  When the doctors in that town couldn’t determine the cause of my pain, people around me began talking behind my back, saying that I was making everything up.  In the article I mentioned above, Kristi had to face this same attitude by her own doctors in the beginning of her endometriosis journey.  These kind of comments might not seem like a big deal to people who have never had endometriosis…….just typical gossip.  However, for the person going through the daily chronic pain of endometriosis, these comments are devastating and can break a woman’s spirit which may even lead to suicide.

On the website that I mentioned earlier, several women became upset by the comments.  I completely empathize with these women.  The site administrator backed off a little bit, but she advised that if they were having those kinds of issues, they needed to go to a professional counselor.  Yes, I absolutely agree with that.  Professional counseling can help immensely in dealing with the mental/emotional aspects of endometriosis.  However, let me remind everyone that not all of these women have access to the best medical care, including psychological care.  If they live in a small town like I did, they may not be able to find the help they so desperately need.  Also, some of these women may not have the financial resources to go to counseling on a regular basis.  I strongly believe that women should have some kind of other outlet where they can just vent and connect with other women who are going through the same thing.  Just knowing that they are not alone is huge help to these women!  I encourage venting on my facebook site – Adenomyosis Fighters.  I will never, ever refer to comments as “whining/pity party” because I’ve been there.  I know what it’s like.  Your feelings are your feelings, and you should never apologize for that.  Even professional counselors will tell you that.

To the general public:  Please, please have compassion for these women who are suffering from these conditions.  Please remember that undiagnosed chronic pelvic pain is not necessarily “in your head”.  Please remember that the average time to diagnosis for endometriosis is 10 years, and that number is even higher for adenomyosis.  Please watch your comments around these fragile women and remember that they are dealing with chronic severe pain every day.  And finally, please give your full support as they are forced to travel a very difficult journey in life.  Thank you.

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