"Jeanne's Endo Blog": Endometriosis Is More Common Than AIDS & More Common Than Cancer! Harnessing The Power Of Twitter For Endometriosis Awareness..

Normally I step aside of "Mom or Mommy groups". I'm well aware that too many endometriosis patients (or other infertility patients) are unable to become mothers and I am very sensitive to this. However, I decided to break my own rules about this for the endo cause. I saw an opportunity to join an online twitter community of over 5,000 women and realized that I'd be foolish not to join/request members' help getting the word out about endometriosis simply because it is a club for moms. So I hope none of my readers will be offended that I've joined a "Mom Club"... because the thought I had in my head when joining this social networking group was that it would be a good place to network with women to HELP endo patients.



Maybe the group can help the twitter campaign we're doing to promote endometriosis awareness? Maybe some of the members of the group might even retweet our endometriosis messages regarding blog posts, general awareness messages, or even sign our endometriosis awareness petition? Once I joined, I discovered that I could post a blog entry right from my TwitterMoms page. So that's exactly what I just did.

In an effort to further harness the power of ever-expanding twitter, I joined this group that has 5,000+ members and posted a blog post on this social network... for the purpose of requesting members' help with retweeting our endometriosis-related tweets. Here is an article about the TwitterMoms group: Redbook: What's Buzzing on the Net: TwitterMoms.

My blog post on 5,000+ member TwitterMoms

Here is what I posted there:

March is Endometriosis Awareness Month!

Endometriosis affects 89 million women and girls worldwide.

Endometriosis is more common than AIDS and more common than cancer, per the Ohio State University Medical Center!

Source for above statement:

Ohio State University Medical Center

Twitter page: @jeanneendo

Sign here:

Endometriosis Awareness Petition

We currently have an aggressive twitter campaign to tweet endometriosis-related messages with a special hashtag at the end of the messages:

#endo

The #endo hashtag is now in the hashdictionary and it is being used daily by many twitter users.

Won't you join us in supporting endometriosis awareness by simply retweeting #endo tweets??

By the way, anyone who'd like to post the endo awareness petition link is welcome to do so!! Help yourself (link above)... By simply posting this link, you can help with endometriosis awareness in just a few moments' time!

In the end, I think I made the right decision to join this group because I am now doing further networking for the endo cause. I even found a very nice news writer in the group and exchanged messages with her regarding endometriosis in the media!

Let's do whatever we can to get accurate information to the public. Inaccurate articles cannot stand unchallenged. We can't allow myths about endometriosis to keep being spread. We need to keep speaking up about the facts regarding endometriosis.

Right now, sadly, the facts are not always pretty. We're dealing with an illness that is more common than AIDS and more common than cancer. It affects 89 million women and girls. There is a massive delay from onset of symptoms to diagnosis for most patients (an average of 9.9 years of delay). Even doctors have been known to describe it is "poorly understood" and "mysterious".

There is good news too! There is hope...

Awareness IS increasing (even in just the last few days that buzz is in the air), media reports are getting corrected, patients are speaking up more, research is being done (even if it's not as much as we'd like), girls are getting diagnosed younger... So the news is not all bad and we all have the power to do our small part to make things better for ourselves, each other, those who have endo but are not yet diagnosed, and future endometriosis patients.

In mid-March, CureTogether will release its book "Endometriosis Heroes". Now when is the last time you heard a new endometriosis book was being released? Pretty cool, huh?

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS

P.S. Today is Friday... Twitter users, please don't forget to participate in Follow Friday! Simply send a tweet with the twitter addresses of those you recommend following. I sent several #followfriday tweets out this morning. Here's an example of one I sent...

I take that back! Wow! I just did a search on #followfriday tweets and after going back FIFTY screens I only got back to 24 minutes ago! I did my #followfriday tweets about 30 minutes ago and I'm too tired to keep searching! So if you have any questions about how to do #followfriday tweets, please just let me know. Can you imagine there are 50 screens full of tweets for #followfriday in just 24 minutes!!! That's how big it is. I have had people find my blog after seeing it on #followfriday so I think we should take advantage of it.

By all accounts, #followfriday is a HUGE trend on twitter right now, generating lots of traffic. Let's use it for endometriosis awareness! Plug your favorite endo bloggers. Plug a favorite endometriosis-related post. Send tweets to direct twitter users to endo info they might not see otherwise. Twitter has millions of users. Let's get their attention!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

'Jeanne's Endo Blog': Stacy's Endometriosis Story - Preview of the CureTogether Book "Endometriosis Heroes"

My dear friend Stacy wrote the following piece for inclusion in a book CureTogether will be releasing shortly called "Endometriosis Heroes". Here is her story, written just a few days ago...

I have endometriosis and I can't tell you how much I appreciate seeing information about it. My hope is that someone will see themselves in my story and be able to get a diagnosis much sooner than I was.

From the time that my menstrual cycle started I was in horrible pain each month. I remember in junior high school having to run out of classrooms because my heavy flow would soak through a tampon and a pad before class was over and teachers would not let us use the bathroom midway through class. The pain seemed to be worse when it was hot out and I would lay on the floor of the basement for hours at a time because it was just too painful to move. Because my cramping also came with diarrhea I had a number of tests on my upper and lower GI system. When the doctors didn't find anything they told my parents I was a hypochondriac. No one considered that I may have gynecological issues.

During college I finally purchased health insurance and began the journey of finding out what was wrong. Eventually I had laparoscopic surgery and was diagnosed with endo. I saw more than a dozen doctors during this time. I was in pain and scared. I got married just before my diagnosis and as my health deteriorated so did my marriage. My husband felt "duped" by marrying a healthy, energetic person who was now debilitated by pain. I tried everything: having nerves in my presacral area severed, acupuncture, massage, biofeedback, physical therapy etc. Eventually my marriage ended and I feel it was a direct result of the endo.

I am now happily remarried and mom of a precious little girl and I still struggle with endo. My period started today and to say that I am petrified of the pain I will be feeling over the next three days (despite narcotics) is not an exaggeration. I was able to give birth to my daughter without pain medication because labor actually hurt less than my monthly period. I pray that my little girl will not grow up to have endo and that research will save future generations from this pain. I find it very sad that my great grandmother and I have dealt with the same disease and that there was not much more that could be done for me in comparison to what was done for her when she was my age.

My advice to someone with endo is this: find a doctor you can trust who respects you, follow every path you can to manage your pain, focus on the positives in your life and be thankful you have been blessed with the gift of life.

Thank you for sharing your story, Stacy!! Sharing our stories helps educate the public and make fellow patients feel less alone!

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS!!!!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.