Showing posts with label answers. Show all posts
Showing posts with label answers. Show all posts

Friday, March 6, 2026

The Weight of Awareness: Ten Years with Endometriosis

 March has always carried a complicated mix of emotions for me.

On one hand, it marks Endometriosis Awareness Month, something I care deeply about and have devoted so much of my life to advocating for. On the other hand, this year especially, it marks ten years since my diagnosis. Ten years since surgery. Ten years since the moment someone finally looked at me and essentially said, you’re not crazy.

Ten years is a long time to live with something that most people have never even heard of.

For those of us living with endometriosis, March can feel heavy. Awareness months are meant to bring visibility to important causes, but when you are personally living with the condition you are advocating for, the experience is different. It’s not just posting infographics or sharing statistics. It’s reliving your own story over and over again. It’s remembering the years of unanswered questions, the appointments, the dismissals, the pain that people can't see, and the moments when you began to doubt your own body. And sometimes, if I’m being honest, it’s exhausting.

One of the hardest parts about endometriosis is that those of us who live with it are often the ones who have to advocate the hardest for it. We are the ones raising awareness. We are the ones educating others. We are the ones pushing for research, better care, and recognition of how serious this disease actually is. Because for a long time, no one else has and that responsibility can weigh heavy.

Not because we don’t care. Quite the opposite. Many of us advocate so fiercely because we care so deeply. Because we know firsthand what happens when this disease is misunderstood or dismissed. Because we know how long it can take to be diagnosed. Because we know what it feels like to sit in a doctor’s office and feel like your pain is being minimized or explained away. But advocating for something that you are also actively suffering from is a unique kind of emotional labor.

Living with endometriosis is already exhausting. It is a chronic, inflammatory, whole-body disease that impacts far more than just the reproductive system. It affects energy levels, mental health, relationships, work, and daily life in ways that are often invisible to the outside world.

Then on top of that, during March especially, many of us feel this quiet pressure to show up as advocates.

To share our stories.
To educate others.
To post about it.
To explain it again and again.

And while I’m proud to do that work, I would be lying if I said it doesn’t sometimes feel overwhelming.

There are moments when I wish we didn’t have to fight this hard just to be heard. Moments when I wish the burden of awareness didn’t fall so heavily on the people already living with the disease. Moments when I wish the medical system, research institutions, and broader public health community had invested in this condition decades ago.

Because if they had, maybe the millions of people living with endometriosis today wouldn’t have had to spend so many years searching for answers.

Still, despite the exhaustion, I keep coming back to the same truth: this work matters. Every conversation about endometriosis matters. Every time someone learns what the disease actually is, it matters. Every young person who reads a story and realizes their pain might have an explanation, that matters more than anything.

When I think about the person I was ten years ago, desperately trying to understand what was happening to my body, I think about how powerful it would have been to see someone openly talking about this disease. To know I wasn’t alone. To know that what I was experiencing had a name. That’s why so many of us keep speaking up.

Not because it’s easy.
Not because we aren’t tired.
But because we know how much silence has cost our community.

Advocacy has become such a central part of my life that sometimes I forget how unusual that is. Many people discover their purpose through careers or hobbies. Mine came through navigating a disease that I never asked for but that ultimately shaped the person I became.

Endometriosis has taken a lot from me over the years. There’s no denying that. But it has also given me something unexpected: a deep sense of purpose.

It taught me how to advocate for myself when no one else would.
It taught me how to listen to my body.
It taught me resilience, persistence, and empathy for others who are quietly carrying their own invisible battles.

And it connected me to a community of some of the strongest people I have ever met.

So while March can feel heavy, it is also a reminder of how far we have come, and how far we still have to go.

Ten years ago, I was just beginning to understand what endometriosis was and how it would shape my life. Today, I understand something else too: advocacy doesn’t always have to look loud or perfect. Sometimes advocacy is simply telling the truth about how hard this disease can be. Sometimes it’s admitting that we’re tired. Sometimes it’s giving ourselves permission to rest while knowing the work will continue.

Because this fight has never been about just one person. It’s about a community of millions of people who deserve better answers, better treatment, and someday, hopefully, a cure. Until that day comes, many of us will keep speaking up. Not because we aren’t exhausted. But because we remember what it felt like when no one was speaking up for us.

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Monday, March 11, 2019

Happy Endometriosis Awareness Month!

Hey everyone! Wow, it's been a while.  I've been super busy with school and figuring all the college stuff out.  Well, it's that time of year again- Endometriosis Awareness Month! Over the past six months or so, I've seen so many new commercials and celebrities advocating for Endo! It gives me a lot of hope that a cure is coming soon.

As for my pain, it's been on and off depending on my environment and stress level.  This week for example, I'm in my school show that opens Friday, so I know it's going to be a stressful week.  Since I know my stress level and pain are related, I'm going to try my best to stay as calm as possible.  If my pain gets worked up, it will make me even more stressed out, so I'm doing everything I can to keep that from happening.

A new thing with me is that I started getting back to the gym.  Exercise is something that doesn't make pelvic feel great, but I know it's necessary so I don't have other health issues in the future.  I've gone to the gym a lot over the past two months, so I'm really proud of myself.  I normally go for two or three weeks, then my pain gets really bad so I stop going, but this time I'm determined to not let that happen.  Now, I've gone enough that I'm committed to keeping myself healthy and I know my limits, so I can tone it down on a bad day if I have to.

I'm going to try my best to post on here on a regular basis from now on because my schedule is becoming less busy.  Keep on the look out for more Endo related things in the media because that is really helping our community! Thank you for reading and happy Endometriosis Awareness Month and remember, Endo is not the End!





Saturday, March 3, 2018

How Endo Affects the Female Body


Happy Endometriosis Awareness Month! I am back again with my mission to spread awareness about Endo because we are still searching for a cure.  Below are real diagrams of how Endometriosis affects a woman's reproductive organs.  These diagrams primarily show the cysts that can grow on the ovaries, Fallopian Tubes, and lining of the vagina.  This causes extreme pain, especially having a reproductive system looking like the last diagram.  There are large cysts, overgrown tissue, and adhesions to a point where the ovaries cannot even be seen.  

Affects of Endo on the Body:
  • Extreme fatigue 
  • Inflammation of organs
  • May cause infertility 
  • Extremely painful menstrual cycles
  • Painful bowel movements 
  • Lower back and pelvic pain
Endometriosis affects the female body in many different ways, pelvic pain isn't the only that comes with Endo.  







https://www.womenshealth.gov/a-z-topics/endometriosis
http://www.idph.state.il.us/about/womenshealth/factsheets/endo.htm




















Saturday, December 17, 2016

Frequently Asked Questions About Endo

Q: Why have I never heard about Endometriosis?
A: Endometriosis is a disease that effects 10% of women, but no one seems to talk about it. The truth is, there is not a lot of information about this disease but researchers are working, as you are reading this, to find an answer.

Q: How much does it hurt?
A: There is no way to describe the pain we are in everyday.  There is no way for anyone to understand what we go through and that is why people need to start talking about it more.

Q: Is there a cure for Endometriosis?
A: At the present time, there is no cure for Endo but there are long term treatments such as the birth control pill.  This pill does not take away the pain, but it regulates it so it is not as bad as it could be.

Q: Can't you just get out of your bed?
A: The truth is, some days I cannot and that is just the reality of having Endo. Some days are worse than others and there is nothing anyone can do about it.

Q: Will it get better?
A: Although I want to say yes to this question, I can't.  It probably will not get better and that is just something I have to live with.

Q: Why does it look like you are fine?
A: Endometriosis is an "invisible" disease meaning women who have it tend not to show how they are really feeling on the inside.

Q: How can I learn more about Endometriosis?
A: I have useful links down below that you can click on to read.

Q: How do you handle the pain?
A: It is really hard most of the time, but I try my best to do everything I can.  The thing that helps me the most is lying down and using my heating pad. If you have Endo, a heating pad is an essential item.

Q: What are the symptoms of Endometriosis?
A: The main symptom of Endo is pelvic pain, typically during a woman's menstrual cycle. There are other symptoms as well such as headaches, fatigue, body aches, etc.

Q: Would you recommend the Laparoscopic surgery? 
A: I would 100% recommend the surgery. Although it does not cure Endo, it helps immensely. It is an easy same day surgery and a short recovery. So if you have Endo and have not gotten this surgery, I would definitely research it.  I will be making a post about it soon so  I can share more information about it.