CHAPTER 15 – #Endo-endo-endo

As some of you may already know, March is endometriosis awareness month. It is currently March 2017. That means it has been 7 years since I was diagnosed and 18 years that I’m almost positive I’ve had endometriosis.

What does this mean? Well like many women and young ladies all over this globe, I am a survivor. I try to look on the bright side, after all I survived cancer, so this should be a walk in the park. Hmm… not so sure about that but I’ll run with it for now.

It is with great sadness and disbelief that a quarter way through another year in this 21st century, endo sisters are leaving this world: be it for health reasons or their own reasons or all of the above; but the common denominator is Endo.

 

Why is this happening? Here are some thoughts:

  1. Lack of awareness and knowledge.

Endometriosis is not a new disease and the symptoms that we suffer with are not new. Doctors in developing countries have been working with women for decades. I know this because my family has been asking me to go visit a doctor since the treatment I’ve had in the United States and Europe has not done much. I am considering it. After all it cannot hurt to try. What’s one more doctor’s visit after having at least 40, and I don’t exaggerate. Dr. Camran Nezhat, pioneer of minimally invasive laparoscopic surgery, has been studying endometriosis for over 30 years! But he is few and far between. The point is awareness. I had a terrible experience when I was first diagnosed. My doctor either didn’t have much knowledge about endo or didn’t feel that I had a right to know or just flat out couldn’t be bothered. To be honest I strongly believe it was the latter. She had no empathy. But even worse, absolutely no regard for me as a patient. When I would go see her it was as if I was causing her such an extreme inconvenience. Well shit change jobs then! So I was left completely in the dark only to have learned a new word: Endometriosis. What the fuck is that? Since my diagnosis things have changed, endo supporters and survivors are extremely vocal. We will not be silenced. Every ailment is as equally as important as any other ailment especially if it is life threatening. Endometriosis is life threatening.

2. Stigma assigned to women’s issues.

The Million Women March held on January 21, 2017 gathered almost 5 million women worldwide. Amazing yet still very very sad. Why are we still fighting the same fight? But besides that why is it still taboo to be vocal about women’s issues. Babies come out of us. The same “influential” men that degrade women forget that they too came out of a vagina. Without vagina’s they wouldn’t be here. But women are the weaker sex. Women should not get equal pay. Women should not be in power. Women should not even be seen, let alone heard. But women can be objectified but please don’t let them have personalities for goodness sake! The world will crumble! Men will become soft and even cry! One of the many reasons behind my blog is to move away from this way of thinking. Just because as a female I am willing to express myself and share my story, does not make me weak. Actually it makes me stronger because I am not ashamed. I have nothing to be ashamed of. I don’t consider myself a feminist, but I am a woman. I have lady parts: breasts and a vagina. So why shy away from them? I’ve got them they and don’t bother me most of the time.

3. Lack of support.

Support is definitely needed from family, friends, coworkers, and communities. (Trust me, I know first hand how deeply a lack of support can affect you while sick. I experienced it from my coworkers shortly after getting treatment for my lymphoma. I was worse off then than before I got treatment.) Social media has in many ways been a blessing in disguise. The endo groups have been amazing. Just knowing that you’re not crazy, that you’re not the only one in your situation, that even though we may not be doctors, as endosisters we can still help each other by sharing our stories and symptoms. It has been infectious. We are now in our 4th year of the worldwide endo march. Amazing! I’ve attended the previous 3. Support has increased substantially from 7 years ago for me. I was very very lost and overwhelmed. Had absolutely no one to talk to until the first endo march. Yes it took 4 years for me to find support, only because there wasn’t any or if there was it was not within my reach. But with social media and the internet, anything is within reach. One of my endo sisters ( and we have never met in person) is a close friend of mine and has been for 4 years! We can talk about anything and everything. You have no idea how much easier life gets when you can talk to someone who actually has a clue about what you’re talking about! It’s magical!

 

Endo is debilitating and if you don’t know all the facts and have no references, you run the risk of putting it on the back burner. I always shrugged it off as being a very painful period or episode. Lady parts aren’t supposed to be fun. They have a purpose and nothing else lays beyond that. Something hurts… well suck it up! That’s what I did. But that is not ok. So please learn from my mistakes and my successes of course. Dig deeper. If you are not satisfied with one doctor, try to find another. Reach out!

 

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