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I am Gwenn Liberty Seemel. My father wanted to name me Liberty Bell Seemel--after the great Philadelphian e-flat chimer--but made the compromise when...
 
 
 
 

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Why Endometriosis Awareness Matters

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In the summer of 2009 over the course of a three-day hospital stay and an emergency surgery, I went from being someone who was mostly healthy to being someone with a chronic and incurable illness: endometriosis.


This disease is caused by cells similar to those in the uterus developing outside the uterus. During the monthly cycles of a healthy woman, a uterine lining is created and then shed. In a woman with endometriosis, lining is created wherever these cells are and is subsequently shed inside the body, resulting in internal bleeding, blood cysts, and scar tissue.


By the time I ended up in the ER a year and a half ago, endometriosis had been having its way with my body for years, but I had exhibited very few symptoms. In the end, it was the rupturing of a grapefruit-sized blood cyst that finally got me. The explosion meant extreme pain in the short term and a lot of damage in the long term: the rupture spread the endometriosis cells throughout my pelvic cavity. Though the surgeon cleaned up my insides as much as possible, he could only remove active endometriosis and not the individual cells that the exploded cyst had just circulated throughout my pelvic cavity.


In other words, if I had understood the symptoms I did have and if I had had the cyst removed before it rupurted, my endometriosis would not be as severe as it is today.



inside a tulip

March is endometriosis awareness month. Though I'd love for new treatments to come out or for a cure to be found in my lifetime, those hopes are a bit premature. At this point, I'm sharing my story so that more people learn of this disease and can help others avoid my mistakes.


The two most important things that everyone needs to know about endometriosis are these:

1) Early diagnosis is key to treatment. The major symptoms are pain with a woman's monthly cycle and pain during sex. These symptoms can be caused by other diseases, but they are never normal.
2) If a person reveals that she has endometriosis, be gentle. It isn't easy living with chronic pain, and one of the more difficult aspects of this disease is feeling like no one understands or cares about what you're going through.



RELATED ARTICLES:
- Raising awareness about endometriosis
- Searching for my bearings
- Change


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Gwenn Seemel is a French-American artist who blogs bilingually.

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Gwenn 5 pts

If you're interested in finding the community of endo bloggers, I can certainly point you towards some of it. Let me know...

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Gwenn Seemel is a French-American artist who blogs ( http://www.gwennseemel.com/index.php/blog/ ) bilingually.

deew27 5 pts

I just had surgery 2 weeks ago to remove one ovary due to chronic pain and PCOS. When she got in there my Doctor found the cysts that she was suspecting, but also Endometriosis as well. I appreciate your description as I haven't really had a chance to research it yet.

www.deeperrin.com ( http://www.deeperrin.com ) - personal ramblings
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Gwenn 5 pts

I'm not sure who started it, but it does seem to help in making sure that people have heard of endo.

It's always interesting to me how the details of the disease are so different for every woman, but the gist of it is the same. Somehow endo seems to always go untreated or under-treated. I think you're right though: the next generation will have it just a little bit better!

Bon courage!

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Gwenn Seemel is a French-American artist who blogs ( http://www.gwennseemel.com/index.php/blog/ ) bilingually.

Gwenn 5 pts

I got lucky and ended up in the ER of a hospital with an endo and gynecological laproscopy expert...

It's nice to meet you (virtually anyway). Bon courage!

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Gwenn Seemel is a French-American artist who blogs ( http://www.gwennseemel.com/index.php/blog/ ) bilingually.

ElegantlySaid 5 pts

I didn't know that we had an awareness month. I also suffer from endometriosis. I started having painful symptoms in my teens, but my mother didn't like the docs suggestions of putting me on BC pills. It grew worse and in 2004 I had surgery to remove scar tissue and several cysts. While I have felt better since that surgery, I was told that it simply bought me some time and that I would be back sometime in the future to deal with all of it again. I'm praying that my daughter will not have to suffer through this too. Thankfully, I know more than my mother did and can better help her. Thanks for putting this out there.

LAWKSF 5 pts

I'm in my early 50s. I'm an endo sufferer, and your description of the cyst rupture - they thought I was having appendicitis! this disease is a long grinding painful awful monthly scourge.