Articles

 
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universal life force

healing endo with enery

By: Jahara Victoria 

AUGUST-6-17

There is a Universal life force encompassed within you. An undeniable, unresting, and powerful current of energy that keeps you alive. A bio-magnetic energy field that holds our bodies and acts as a universal phenomenon, (it’s also science.) 

Rub your hands together, fast. Create heat between your palms and you will feel the friction of your energy. That’s you. It is the force of flowing rivers, rain hitting the pavement, saltwater waves, and the wind pushing through the trees. Everything alive. 

 
 Art by: Katie Drum

Art by: Katie Drum

thoughts on life and endo from a freshly diagnosed chick

By: nicole Middleton

AUGUST-7-2017

 Have you ever met a Gyne that you loved? I haven’t. I know I haven’t been in the game long; I was diagnosed only four months ago. I also know that meeting the perfect medical advocate is a pipe dream but a girl can dream right? I moved to a new city last month and I just met my new Gyne. It came at the right time, I was unhappy about my old one in Chicago, and I desperately wanted a second opinion. Dealing with daily endo pain is so fun when moving, can I get an Amen, ladies? Nevertheless, I am now settled in my new home in the St. Louis area but my first trip to this new doctor was unsettling. 
 

 
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The Highs and Lows of Expectations

By: Autumn Smith

July-17-2017

"How does it feel to have your life back?!"

I get asked this question a lot now, but I still don't have an answer. Three months out of surgery and still feeling like I'm deep in the dark hole of chronic illness, that question quickly sends me into a panic. When WILL I have my life back?

Right now I'm still dealing with pain daily, more chronic migraines than usual from the change in hormones, and menopause is making me feel like I've repeatedly been hit by a truck every morning. But to be quite honest, I don't know if I'm doing all that bad right now. Since surgery, I've had some amazing victories I never knew were possible for me. I was able to experience a heaping handful of some of my favorite activities, but with zero pain for the very first time. I found out what it was like to choose to stand instead of sitting, a strange sensation I hadn't experienced for years. I felt attractive again, I kept some good plans, I had a few margaritas, and I could feel myself morphing into a new woman. I remember being scared and not knowing what to do with myself, and then my time started to slip away from me. 

 
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What they don't tell you- life after

By: Molly Weiss 

JULY-17-17

I spent four months just trying to keep myself alive long enough to find a doctor who would take me seriously. In the throes of attempting to keep myself alive (this isn’t a story about the doctor who screwed up, maybe some other time) I never had the chance to think about what it would mean for me when it was all over. I knew none of the medication I was given was working, I knew every time I took it I was loading up body with more and more unnecessary steroids, hormones, and toxins than it could handle. I knew all of that, but in the throes of trying not to bleed to death, trying to stay afloat in a venerable red sea of exhaustion, low blood counts, pain, fear and all the heavy lifting that goes with finding a doctor who will take a woman seriously, I got lost.

 
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a letter to my future self

By: Fela M'tima 

JULY-7-17

To my future self: I am sorry, I have taken something from you.

First off, I'd like to tell you that I had always thought of this as a "last option" but I never knew what it would take in me, to make the decision of when it would take place. I've decided to remove my uterus, my option for carrying and creating a biological child. I am 24 years old. 

To take you back and have you relive it a bit, I was diagnosed with Endometriosis only a week after my 23rd birthday. By the exact same time the following year, I had already had wide excision surgery with an ovarian suspension, endo was found on my diaphragm, and it was confirmed I had Adenomyosis. A few days before I turned 24, I had a surgery consult for my third surgery. In less than two years, I've had three surgeries, four if you count the surgery to repair a hematoma a week after my third surgery.

 

vocalizing Pain

By: Fela M'tima 

Oh, to be a woman. We are built to endure pain, both emotional and physical. It's magical, beautiful, and honestly fucking mesmerizing. Now, as women with a "women's disease" we use all of our witch magic and strength, stir it into our yellow cauldrons, and battle one of the hardest diseases out there. No matter how much pain you can handle each day, there is still a moment, or period of time, when it's too much. Your natural instinct is to say something. I'll be the first one to admit, I'm queen of complaining. I've tried denying it, even before I wracked up all these invisible illnesses, but the truth is out there. I'm also a hypochondriac, so it's not always complaints, it's fears as well. Oi-fucking-vey, right?


 

i am that woman

By: Fela M'tima 

Explaining your illness to the people you love can be painful and confusing. What hurts even more, is when they question your illness, and though they don't intend to, you feel attacked.
We feel attacked because we have become so absorbed in our disease, that when it fails us, we feel we have failed too.

I had what I thought would be a successful surgery. My hopes were so high, I made commitments for the first time in over a year. I brought immense change within my life, determined and confident that I would be able to achieve these things. Of course, I thought to myself, I can go live my life, I can do these things. I wanted to help my family, I wanted to do good and feel purpose. 
And though this family was far from where I was, I pushed myself to get there. It might of been because subconsciously I was afraid that if I didn't take this leap ASAP, I wouldn't be able to at all. I ended up being right. Very fucking right.


 

it feels like project

By: Fela M'tima 

A few weeks ago I woke up in agonizing pain. My boyfriend turned his sleepy head to mine and said, "Explain it." I told him, "My body feels like it's made of glass and each part has been broken, shattered."

Let me take you back to 6 months ago, I had met a woman online named Gabriela Leskur. Within just minutes of chatting with her, she told me about an art project she was working on. She explained that she wanted to show metaphors of invisible illness's through the art form of video. Something so hidden to the world, she wanted to put it on the "main screen" sort of speak. I was instantly excited and knew I wanted to do anything to be apart of it. I wanted to share her ideas and plans with the Endometriosis community and through Endotwins, I was able to do that. I interviewed her in Fall of 2016 which also gave women a way to reach out to her, as she was gathering metaphors for potential videos. 


 
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falling down a rabbit hole

By: Fela M'tima

Here I am, just like Alice falling down the rabbit hole. I don't see old furniture, grandfather clocks, or even a fucking rabbit. I am here, free falling into an abyss filled with Fentanyl patches, Vicodin, and my own fears disguised as monsters faces. I don't know what is up, what is down, or when I'm due for my next dose of meds.

All I can hope for is when I land, it will be into a hospital bed being wheeled into an OR. (Please and thank you.)

Times like these you really need to give yourself a pep talk, or so I think when everything else has failed me. Times like these when you're calculating your emotional and physical survival rate but you struggle with even that, and realize there isn't much that can go right. I can't blame this endo flare on mercury being in retrograde anymore. Because sadly, the retrograde will end, and here I'll still be, rotting away. All I can blame my flares on these days is the sick and twisted disease itself. How it's just eating away my insides and making home on organs where it doesn't belong. 


 

hate from within your tribe

By: Autumn Smith

Last month when I first woke up from surgery, I was told something I had never heard before. I was, at that moment (and if even for JUST that moment) free of disease. Does this sound familiar yet? My doctor had removed everything. Well, except maybe tiny microscopic pieces invisible to the human eye. Of course, it can return. "It can return" is something I've thought about having tattooed to the back of my hand so I never forget, but at that moment, I was at peace knowing that my organs weren't being eaten alive by my horrific disease. After joyously letting everyone know how much disease was NOT in my body for two weeks after surgery, Lenny Letter popped into my inbox and Lena Dunham revealed the same exciting news. Like many times before with many different women, I felt so in tune with Endo Sister Lena. Apparently even the scummiest of gossip news sites were just as happy for her as I was, "LENA FREE OF DISEASE!" they exclaimed in their headlines. Well, that wasn't necessarily completely accurate, I could tell they thought she was forever in remission by the way they worded it, and that can be problematic. I summed it up to the media so obviously not giving a shit about my disease, and moved on. Until, that is, that I started scrolling through social media. My favorite endometriosis-themed accounts were so upset by these headlines, some of them had completely written her off as an advocate. 


 
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endometriosis is a social justice issue

By: Fela M'tima 

This article that I'd like to share with you all and talk about is a Huffington Post article by Jhumka Gupta. It talks about Endometriosis being a very large Social Justice issue. It hit home with me since I haven't been able to work a "normal" job in almost two years. Besides that, I struggle daily being able to run our non profit (Endotwins) even though it's a job I can do with my heating pad. This is a real issue, and not just for me personally. Even before my diagnosis, I was missing school due to what I thought was normal period pain, and the same for work. I thought it was normal though I was always made to feel bad about it by society.


 
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THE SADDEST AND HAPPIEST FAREWELL TO MY REPRODUCTIVE ORGANS

By: Autumn Smith

Tomorrow, on March 14th at 5 am, I'm having a full hysterectomy. There are a million more graceful ways I could have started this piece, but with this subject, I've learned that blunt is best. I'm also having excision surgery for endometriosis on most organs in my abdomen and excision surgery in my thoracic cavity, but we don't need to talk as much about that because it seems like once the word "hysterectomy" is heard, everything else is just a blur. Don't worry, it's a bit of a blur for me as well.


 

Through Surgeries and Beyond

By: Fela M'tima 

A year ago, I was anxiously waiting to meet a new surgeon. I had one exploratory Laparoscopic surgery months prior and was in more pain post op than before. It was a really dark winter for me and my destroyed reproductive system, to say the least. I kept saying to myself, it's a new year, you're going to meet a new surgeon, she's going to be great, and you're going to be great. Your LIFE will be great. Well, things didn't go as "great" as I had hoped, but I did meet this surgeon that changed my life.


 
 Photo By: To Wander and Seek Photography

Photo By: To Wander and Seek Photography

Keeping myself and my friends through chronic illness

By: Allison Rosecast

Sometimes she’s familiar. She wears the same old sweater and has the same awkward laugh. She still wears that musky rose perfume and carries a beat-up moleskine. Her heart still races for that song by Björk, the first tree bursting into bloom in spring, the smell of palo santo burning. If you don’t look closely, she might seem like the very same girl. But if you catch her in the right light, you might see the dark bags beneath her eyes. If you catch her undressing, you might see the surgical scars on her stomach. If you catch her in the right moment, you might see she’s not you anymore.  


 
 Art By: Valeria Patterson

Art By: Valeria Patterson

TRAPPED IN AN anxious mind AND A CHRONICALLY ILL BODY

By: Fela M'tima

Mental Illness is real, our brain is an organ, and not all of us have organs that work properly. The first time I felt like my body was failing me was when I had my first panic attack when I was ten. I tripped down the stairs on the way to lunch, I wasn't hurt physically, I got up and shook it off. My brain had a different response. It went into the fight or flight mode and I had one of the worst panic attacks to this day. I've been in and out of therapy since I was 6 years old, for many different reasons I don't really need to discuss. My anxiety started before the panic attacks did. I was an anxious kid, to say the least. I was always convinced something was wrong. (Funny, because I ended up with two chronic illness's) But I did, I was scared constantly. I lived and still live in a constant state of fear. 


 

trump, please stay out of our reproductive rights

SINCERELY, THE WOMEN WITH DISEASED UTERUS'S

By: Fela M'tima

 

If you're like me, and millions of other women, you have insurance under Affordable Care Act. My dream husband/best friend/brunch buddy, Barack Obama, made insurance available for those who can't afford insurance. As a sick person who cannot work, you have no other option for health care. It has personally affected me a lot these past few years. I was able to get almost every prescription I needed for free. I was able to meet with multiple obgyn's until I met the right one. I was able to go to the ER an obscene amount of times without the fear of the huge medical bill that usually comes with it. The biggest thing of all, I was able to have four surgeries completely covered, as well as multiple hospital stays without anxiety of medical bills adding up, that I would never be able to afford. We all know the stress that comes with being sick with incurable disease (s) and having insurance and money not be one of them, to know that you can get any sort of treatment to make your life just a little bit easier, is a damn blessing.


 
 
 Art By: Hung Lu

Art By: Hung Lu

cherry blossom

By: Jahara Victoria

 

Two years ago I was diagnosed with Endometriosis and given the Lupron shot. Thirty minutes after receiving my first dose, I nearly collapsed. I called the hospital in a state of panic, it was Christmas Eve and I couldn't drive. My tongue was thick and heavy as I dialed the hospital. They assured me defensively it wasn’t the shot.  My six month contract with Lupron left me in a state of silence. A wet blanket covering the body of who I used to be. Suffocating an illness, while quietly breaking me. 


 
 Art By: Hanako Mimiko

Art By: Hanako Mimiko

what does endometriosis mean?

By: Emma Fulcher

 

Endometriosis (en-doe-me-tree-O-sis) affects an estimated 176 million women and girls worldwide. It’s a body-wide disease that occurs when tissue similar to the lining of the uterus is found elsewhere in the body causing pain, organ dysfunction and/or infertility among a range of other symptoms. While no one definitively knows the cause, theories include genetics, stem cells and blood & lymph system distribution. Inflammation is a key factor and certain environmental toxins have been linked.
 

There is no cure.


 
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life without disease

By: Autumn Smith

Today I imagined a life without disease.

A life without pain and constant suffering. It was everything I had ever wanted.

I didn't have to disappoint people by canceling plans and I didn't have to rely so much on the ones I love. 


 
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Let's S(t)ick Together

By: Autumn Smith

As Fela explained, this week I finally "met" her for the first time.

It's weird, our friendship was so close before this trip that I didn't really think it would make a difference. We talk literally all day everyday and we FaceTime and Skype all the time. We don't do it like normal people, we carry each other (in our iPhones) around the house while we make dinner, go to the bathroom (gross), and while we can barely open our eyes and talk with pain. Everyone was asking me if I thought it would be weird to meet, and I didn't at all. And it wasn't weird, not in the slightest. 


 

Through Puke & Pee

By: Fela M'tima

This week by plane, car, and train-to say the least, were all terrifying. One of the highlights of my trip was seeing my "endosister" who is my endotwin, the one and only- Autumn Smith. Many know how our friendship began, which is very similar to how many endosister's become friends, through the large online community. What I didn't expect is that I actually met my new, best friend. This short and beyond sweet visit solidified our one of a kind friendship. 


 

single ladies

By: Fela M'tima

The dating world is scary. Point blank. Stir a chronic illness into the mix and it could easily boil over, and disintegrate. We can't hide under our blankets and heating pads while playing "single ladies" on repeat for the rest of our lives. But, how do you make dating easier when you have a dysfunctional pelvic floor and have racked up a punch card of ER visits?


 
 Art By: Kansuke Yamamoto

Art By: Kansuke Yamamoto

link between PTSD & Endo

By: Taryn Lider

Five years ago I was diagnosed with Post-Traumatic Stress Disorder following two separate instances of sexual assault.

 

Given that I have struggled with general anxiety disorder and depression since I was 13 yeas old, I quickly brushed this off as a misdiagnosis. But my life started to unravel as I suffered flashbacks of the traumatic events, losing periods of time, often becoming confused or even lost in my own neighbourhood or the place where I worked or went to school. As the flashbacks grew, the pain I was suffering from a softball-sized ovarian cyst and the endometriosis ravaging my pelvis and abdomen grew as well.


 

Tips for Communiting the Experience of Illness with Loved Ones

By: Kayla Adams

Chronic pain has this insidious, subtle way of fostering isolation. Just as the cause of our pain is often invisible from the outside, we can begin to feel as if we’re living detached from from the life we want by an invisible curtain of pain. This intangible veil of discomfort/sickness/hurt colors our interactions and can make it so hard to feel connected, even to those closest to us.The irony of adjusting to a life with constant pain, is that at the very time you’re most in need of the love and support of those around you, your relationships are being challenged and affected by the same cause of that need. Long-term illness produces a disequilibrium in the structure of our established bonds. Our loved ones are suddenly thrown into a new world, too; one where they’re often confused, and scrambling to adjust to our new normal.


 

Thoughts on the Slow Evolution of People, Periods, and My Disease

By: Autumn Smith

 

In sixth grade we would whisper about the girls who had started their periods (even if you were secretly one of them) because it was weird, funny, and gross. The boys agreed. Gross.

In 7th grade, girls were starting left and right. Were you one of them? I mean if everyone’s doing it, it must be normal. Even the boys were curious about it! They most definitely would have projectile vomited if they heard you actually speak about it though.


 
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The Girl Who Bled Through Everything

By: Fela M'tima

I remember in elementary school it was almost like a competition on who would get their period first and of course, I became that first person in 6th grade. I remember pulling aside my friend Jackie and telling her. Her face lit up and she said, “Well that means I should be getting mine soon then!” I definitely didn’t feel like a *woman* when I started bleeding. 

 
 

 
 Art By: Leslie Ditto

Art By: Leslie Ditto

Alien Torture and the Exorcism

of the Sick Girl

By: Autumn Smith

Since I’ve been sick and battling a chronic illness, I’ve developed a small collection of things that I try to avoid at all costs. Three in my top five are full blown migraines, really mean ER doctors, and strange, ineffective and painful procedures. Before I had sworn off trying new things before researching them, one painful procedure led to the worst migraine of my life that brought me right into the arms of an angry ER doctor, ready to ruin my week.


 
 Photo By: Maisie Cousins

Photo By: Maisie Cousins

Bloodbath in the ER

  By: Fela M'tima

 

Where do I begin? I had been bleeding for two days and by bleeding I mean if I sat on the toilet it felt as if a bucket had poured out of me. I have always been a heavy bleeder and have stuck it out during many periods through my lifetime so far but this was definitely different. I remember tearing the cover of my heating pad off and scorching my abdomen for two days. I had burn marks but I couldn’t really feel it compared to the achy blood filled pain I was enduring. I knew I needed to go to the ER but I was hoping the bleeding would pass, literally, hoping it would keep pouring out and I’d eventually be fine. Makes sense, right?


 
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If You Can’t Handle Me With Endo, Fuck Off

    By: Fela M’tima

 

Oh, relationships. This was already a very tough subject for me 6 months ago, when I had lost many friendships due to being sick. Didn’t help that I am far away from my hometown of Chicago, so any friends I have here are friends I had only known for a few years prior to my diagnosis. But now, this subject is even harder, because I also lost a boyfriend of three years. At one point in my illness I believed he would be the one that stuck through the hardest of times and I was very wrong. I did learn through this that that is okay. I think that’s one of the biggest things you have to accept when you’re sick. That not everyone can handle it and that is not your fault, it is actually a fault on their part. So, you let them go, you keep your head up, you remember that there are people that can handle it, people that will fight even harder then you at times. You hold onto those people so damn tight and the ones you’ve lost, will slowly fade.


 
 Art By: Michael Mozolewski

Art By: Michael Mozolewski

“Superhuman”

By: Autumn Smith

Last year and the year before, I wanted to die.

 

It’s strange to read that out loud. It’s hard to believe that I ever fully grasped the realness of that, but I think I did.

It happened over time, and it was a combination of severe depression, hormones, and finally realizing how sick I was. I’ve always dealt with chronic anxiety and it’s easy for me to slip into a depression. It’s also easy to let it go untreated. Lupron is a strong medication to stop the production of endometriosis, and it basically makes you go through menopause. I knew nothing about this drug before I started my two years on it, and as much as I love my doctor’s care, he didn’t tell me about the side effects. It hit me at the worst time in the worst way.

 


 

A Period Of Time

By: Fela M'tima

 

We all know endo can take things from us, for me, it took my motivation very quickly. I’ll take you back to a year ago.

I had recovered from my first surgery and was feeling beyond terrible. I didn’t really leave my bed. I remember I had leftover colored pencils and coloring books that people had gotten me to keep me busy post op, but I never wanted to use them. I spent a lot of time distracting myself with TV. If I spent time making art, I had to feel more emotions, I had to connect to myself, and I didn’t want to. I felt disconnected and I didn’t mind it. It was the worst time of my journey with endo, to be honest. It wasn’t just that I didn’t feel good, I didn’t want to do anything anymore. I felt useless, helpless, and uninspired.


 

Alternative Medicine: KUWTK

By: Autumn Smith

 

Good television is wonderful, and I consider watching it to be one of my hobbies. I am an artist and I love cinematography and film, especially in the format of television. We are lucky we live in a time where TV networks are constantly working to find new shows that are able to compete with quality films. Breaking Bad and AMC, so many comedies and dramas on FX, anything on HBO even starting with the Sopranos and Six Feet Under, there is so much to watch.