Endometriosis

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“My name is Elizabeth and I have been an endometriosis warrior for over a decade. I would like to shed light on an important topic that involves 176 million around the world. Since 1 in 10 fight this battle daily, I finally built up the courage to share my journey with those who may gain from my decade of chaos with western medicine. I was sick of it and my friends and family were too. With the grace and generosity of my best friends who set up a go-fund-me, I was able to attend my first holistic treatment center. Finally. I was able to find clarity, coping skills, understanding, forgiveness, peace; the power of I AM. I finally understood that I AM in control this illness, not the other way around. I have tried EVERYTHING. From birth control, IUDs, Lupron, Depo Provera shots to over a dozen procedures; ablations, dilation and curettage, etc—-down to finally “throwing in the towel” and getting a complete hysterectomy, putting my body into early menopause by the age of 24. I have legitimately tried all that western medicine offers - I have even participated in multiple clinical trials since I was 16. Only to find that after all of that, I have growth possibly spreading to other parts of my body. (Yes, endometriosis spreads past the pelvic area). I share these details because even with an extensive medical history, I waited 3 months to see a specialist. And am waiting another 3 months for excision surgery. I am lucky to even be able to see her at all. My heart aches for those who cannot afford the “privileges” I have to see doctors and get holistic treatment. My heart aches who were treated as “fakers” one too many times. An endo sister Kimberly Anne comes to mind, who lost the battle with herself 3 years back. I remember hearing about her loss at a time I felt similarly lost and defeated. 1 in 4 people with endometriosis contemplate suicide. I have been to emergency rooms I’m debilitating pain, only be treated like a drug seeker, a “faker”, an “emotional girl on her period”. I have been treated less than human but I am no longer angry, I am empowered to use my insight. One post, conversation, or event at a time; awareness is key—-every voice matters. Thank you for listening to mine."

 

 

"Hi! My name is Phuong, I’m 30 years old originally from Melbourne but currently calling London home, and I’m wearing this yellow AWARE necklace for Endometriosis. My journey began 3 years ago purely by chance. A routine pap smear revealed some low grade irregular cell growth in my cervix which required me to get an internal ultrasound. This led to the discovery of a cyst on my right ovary. It wasn’t until the biopsy post-surgery that I found out I have a condition called Endometriosis. I didn’t know anything about this condition, I barely knew how to pronounce it at the time! I felt pretty alone in the beginning, I didn’t know anybody with this condition so I couldn’t talk to anyone about it. It wasn’t until I started educating myself on Endo that I realised how little information there was on this condition. It affects 1 in 10 women, and takes on average 7 years to be diagnosed. It is so important to raise awareness for this condition, as its symptoms can be so commonly mistaken for other conditions. There is currently no cure for Endo, and barely any treatment plan; just whatever that will help you get through your day. Wearing this necklace will hopefully be a conversation starter to allow me to continue raising awareness for this invisible illness." @coach_phuong

 

"My name is Yvonne from Fullerton CA and last year I was diagnosed with depression and endometriosis. Before my endo was finally found I spent years suffering from painful cramps and menstrual cycles to the point I couldn't get out of bed and on the worst days I was dizzy, nauseous, and vomiting. I thought painful periods was just the way it was. Things got worse and I began to isolate myself because the pain was too much to bare. I spent many days in my room crying and praying for this pain to stop. I missed out on family get togethers, birthdays, and even holidays. My depression didn't help the situation at all. I was in a dark hole and didn't know how to get out. I begged doctors to figure out what was wrong with me but doctor after doctor and test after test, everything came back normal, until it didn't. Thanks to one doctor who listened, really listened, and did everything she knew she could. And finally, she came back with, "I think you have something called endometriosis and I need you to see a specialist right away... Especially if you want to have children someday." Endometriosis!? I never heard of it but even as I lay in the ER bed I was excited to maybe, finally have a name to it. We found a specialist and just like that I scheduled my laprascopic surgery to and it was confirmed, stage 3 endometriosis. Well here's the thing. There is no cure for endo. Surgery will help, birth control has helped, and a hysterectomy is NOT a cure. It is my duty as a chronic illness warrior to inform others of this disease and I'm so happy a platform like @awarecauses exists for me to do so. (to follow my journey find me at @outdoorsy_girl_yvonne and at my hiking group page @hikingonpurpose where we support wounded veterans and chronic illness warrior's)." @outdoorsy_girl_yvonne

 

“Hi my name is Caneshia and I am 27 years old. I have been dealing with Endometriosis for 3 years. I had so many dark days and my quality of life had went down the drain. I gained so much weight and was so swollen from inflammation. I went through 2 gynecologist before I got the right diagnosis and then afterwards I was put on Lupron. Lupron was a total nightmare for me. I dealt with hot flashes, migraines, anxiety, joint pain and memory loss all while still in pain. Some of these side effects are still with me and I’ve been off of Lupron for a year in a half. After being off of Lupron I had finally found a way to manage my pain. I started keeping a food diary and paid very close attention to what I put in my body and to the foods that caused me to flare. After 2 months of diet changes I started working out and focusing on being healthy mentally spiritually and physically. After cleansing my body and putting my mind in a better place my fiancé and I found out that we were expecting!!! This was huge for us because we were told from a gynecologist that I wouldn’t be able to get pregnant. My fiancé and I found out that we were having and beautiful baby girl. Now 10 months have passed and our miracle baby is here with us giving me a purpose. We went through so much hell to get here and Endometriosis will always be a battle for me. I want my Endo Sisters to know that there is hope for us all it just starts with letting our voices be heard!” @endosistersunited 

 

“I'm wearing this yellow aware necklace because I know endo. I became rather #endoexperienced as I trudged my way through the majority of my life holding on to the belief that this was just how everyone felt. As an adult, it has been discovered that I have a handful of chronic illnesses including Lyme and autoimmune disease, chronic pain, inflammation, and mental health issues -to name a few. My experience with endo comes with a few months of validation, over 12 years of sucking it up, a dash of not looking sick, and a smidgen of disbelief in my entire self. I have only just begun sharing a slice of my experience with endometriosis, and I will continue to use my voice to raise awareness for it. I created www.iknowendo.com, where I work to expose the humans who support humans with endo. I share my photography, experience, and partner with other humans who know endo. The idea that nobody can see our illness is outdated, because we are seen. The humans in our lives are visible and so is their support. Endo isn't easy, there is no cure, frankly, there is no treatment either. We are left to fend for ourselves while also attempting to be productive members of society. We need to be aware, we need to stand together, and we need to listen to humans who have something to say. If my endo was showing, it would not have taken me the majority of my life to get a diagnosis. I would not have had to battle this on my own. We can do better - let's make it happen.” @amanda.haswell 

 

“1 in 10 women have endometriosis. It takes an average of 7-10 years to get a diagnosis. When I started my period in middle school, my cramps were terrible. I remember feeling like all I wanted was to sit lay in bed for hours to relax, but I was stuck in a sixth grade classroom trying to cope with pain I had never experienced before. Everyone told me periods were supposed to hurt, so I thought it was normal. When I got to high school, the pain spread to my back and I developed migraines. In college, the pain was constant. I had no relief between cycles and my periods were excruciating. I was officially diagnosed with endometriosis in 2017 during a diagnostic laparoscopy and I cried with relief knowing that I wasn’t crazy, what I had been experiencing wasn’t normal, and that I had a name for what was going on. I had a second surgery in 2018 with an excision specialist to remove the endometriosis. It was wrapped around my nerves, infiltrating into my muscles, tucked up near my bladder, and back near my colon. Since my excision surgery I’ve felt a lot better, and I try to raise as much awareness about endometriosis as I can. I’m still healing and I still have bad days. I do a lot of work in physical therapy and luckily my insurance covers massage. I see a counselor every two weeks to talk about how my physical health affects my mental health. I’m still able to work my dream job as a pediatric nurse despite my living with chronic illness, but managing my health is like another full time job. Painful periods aren’t normal. Pelvic pain isn’t normal. If you’re experiencing any of these things, talk to your doctor about endometriosis. Endometriosis has just been the beginning of my chronic illness journey. I’ve also been diagnosed with several other conditions that often go along with endo. If anyone ever needs a place to talk, vent, or ask questions, I’m always available to listen.” @chronicallyilliemillie

 

"My name is Michelle, and I'm an endo warrior. I've never had a normal period. I want people to know about endometriosis and adenomyosis. More than one in 10 women have endometriosis. I’m one of them. For more than a decade, my periods were extremely heavy, excruciatingly painful and completely debilitating. And they didn't last three to seven days. My periods sometimes went on for weeks at a time. I bled for two whole months one year. But the saddest part of this is that as a teenager struggling to be "normal," I never realized my heavy periods were anything but. Doctors didn't believe me and told me I was depressed. It took several years (and lots of tears) to finally convince a doctor in Hawaii that something wasn't right. He suspected endometriosis and four years later, I've had three surgeries to help improve my quality of life. It shouldn't have to take so much effort. Last week, I had a hysterectomy to help "cure" my adenomyosis, another chronic disease I recently discovered I had. More people need to know about these invisible illnesses. People need to listen to their bodies. Trust yourself. Endometriosis doesn't define me, but it sure as hell helped me understand myself a lot better." @myshellie23

Endometriosis

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