Face Making

Artist Gwenn Seemel’s bilingual blog about art, portraiture, free culture, and feminism.

Why endometriosis awareness matters

2011 . 03 . 01

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 ruptured, 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.

- Raising awareness about endometriosis
- Searching for my bearings
- Change

CATEGORIES: - English - TOP POSTS - Endometriosis - Philosophy -

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-- Jenn -- 2011 . 03 . 02 --

Thank you for sharing this post Gwenn.

My endo also went undiagnosed for years and I suffered terribly because of it.

It has helped more than anything to know I am not alone. smile

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-- Gwenn -- 2011 . 03 . 03 --

It’s so true.  Community makes all the difference!


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-- Mireille Dijkstra -- 2011 . 03 . 04 --

Dear Gwenn,
Thank you for putting this on the map!! I also have severe endometriosis but never thought about sharing it with the rest of the world…
By you doing this I am going to do that as well, the awareness will help so many other women to come out and talk about it!
Thank You!!

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-- Gwenn -- 2011 . 03 . 10 --

@Mireille: You’re welcome and thank you and pleased to meet you (virtually anyway)!

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-- Serena -- 2011 . 03 . 10 --


Great post and I am so sorry for your experience. Finding out that I had endo was a surprise for me too. Learning that my reproductive endocrinologist had only seen two cases worst than mine was mind blowing. Two surgeries and lots of fertility struggles later, I wish I’d asked more questions when I was young and I wish that my medical providers had listened to me better. Thank you for creating community and for educating folks about this disease.

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-- Summer -- 2011 . 03 . 10 --

I too think it’s great you are doing what you can to raise awareness. You’ve inspired me to do something for spondylitis awareness next month which is coming up. Like you I had symptoms for a long time before getting a diagnosis although I was improperly diagnosed with fibromyalgia.  And like your condition it’s chronic and debilitating. I think it’s hard for people to understand you can be sick when you look fine.

Thanks for sharing your story.

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-- Gwenn -- 2011 . 03 . 11 --

@Serena: Yes!  Sometimes I think my doctor gets tired of all my questions—he’s popular and his beeper is always going off during our conversations—but it is so important to get all questions answered as fully as possible.

@Summer:  It’s so true!  With certain diseases, sufferers can pass in the healthy world if they choose (and if they happen to have the energy to do it on that particular day), but sometimes I wonder if it doesn’t do sufferers a disservice in the end.  Still, I suppose I would rather have the option passing than not.

I’m going to go look up spondylitis right now…

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-- Dale Seachord -- 2011 . 05 . 17 --

Sorry you have this. I have crohns, so understand about the uncurable and chronic nature of having something that seems to want control over you. Funny how this can change your perspective over how you view, or once viewed, the map of your future.
  On the positive side, think of the faces photographed by Diane Arbus of those who have already gone through the worse and the steady strength that imparts.

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-- Gwenn -- 2011 . 05 . 17 --

@Dale: It’s interesting what you say about the map of one’s future.  I was never good at thinking too far ahead, and I only regret that now that the possible routes have been altered.  There’s a lesson in there somewhere—something about appreciating things before you lose them…!

I’m sorry to hear about your struggles too.  Bon courage!

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-- Stephanie -- 2011 . 06 . 03 --

Wow! I have never heard of this. Thank you for making us aware.

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-- Latha Devi -- 2013 . 12 . 15 --

Hi Gwen..
Thank you so much for sharing while educating ladies abt endometriosis. I was diagnosed with endo two years ago an the doc told that I’ve alredy been having it for the past two years.
My problem was that I did not have any symptoms until one final day when I had very bad abdomen pain on my right.
When I was taken to the ER I was diagnosed with accute appendicitis. It was after that operation that I started bleeding heavily. Doctors put me on various pills and injections and nothing worked and finally operation to burn the endo walls was the only option.
As warned by the doctor, it’s two years after the operation and I have started bleeding. The doc has suggested for me to use Mirena to stop this bleeding because there are no chances to get pregnant as I am. 
not married.  The main thing that concerns me abt Mirena is weight gain, is that true, that you gain weight?

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-- Gwenn -- 2013 . 12 . 15 --

@Latha: I’m sorry to hear of your troubles—all of it and especially the misdiagnosis as appendicitis.

With regards to the Mirena Coil and weight gain, before I had the Mirena inserted, I had lost a lot of weight (a reaction to the Pill).  So, when I did gain weight on the Mirena, it felt like getting back to normal more than anything else.

Bon courage!

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