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3/04/2009

'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.

4 comments:

Yaya said...

Stacy,
Thank you for sharing your story.

Yes, I'm all too familiar w/ the pad plus tampon just not being enough...

And finding a dr that will DO something for your health, not as easy as it seems. Don't settle if you are not satisfied. There are too many dr's out there to settle on one you are unsure of. (learned that from you Jeanne!)

Alicia

Alexandra Carmichael said...

Thank you so much Stacy, for sharing your story for the book, and big thanks too to Jeanne for sharing it on her blog and helping spread the word about endometriosis as well as the research we are doing at CureTogether.

And what a beautiful, glowing picture of Stacy! Thinking of everyone with endo this month, especially.
Alexandra
Co-Founder, CureTogether

Jeanne said...

Yaya,

Yes, too many of us are familiar with the insufficiency of combining tampons and pads. It's really a problem. I wish I had discovered homeopathics sooner because they do help me with my hemorrhaging problems... thank goodness!

Yes, finding the right doctor(s) can be a tricky proposition indeed!

It's very important, though, to find health care professionals who will take issues seriously, who are highly skilled, who treat patients with respect, and who (in my mind, anyway) will be open-minded enough to at least consider options besides the "standard" methods of "drugs and surgery" alone.

Jeanne

Jeanne said...

Alexandra,

It was my pleasure to get the word out that you were looking for endometriosis stories for your Endometriosis Heroes book!!

If you ever need stories like that again, let me know because I'm sure we could have gotten many more women to share their endometriosis experiences!

It's exciting that the book will be out in March!

It's exciting to see endometriosis research being done! I can't wait to see the book!

Yes, that really is a nice picture of Stacy!

Jeanne

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