Remember the Ice Bucket Challenge? Come March, be prepared for the Endo Challenge:
By Ellie Friedenberg
January 29, 2015
San Diego, CA – Social media may be getting a bit of a makeover this March as thousands of women prepare to turn their profile pictures yellow. The yellow movement is the catalyst for the “Endo Challenge”, an awareness campaign designed to bring understanding, awareness and education to Endometriosis, a disease that affects 176 million women worldwide.
About The Endo Challenge
Endometriosis is categorized as a chronic pain disorder and is the number-one cause of infertility in women. Despite its crippling symptoms, “endo” is the least researched and least understood disease in women’s health. Due to the lack of knowledge surrounding Endometriosis, many women turn to online support groups to share their knowledge and support one another in finding adequate treatment.
With some groups reaching over 6,000 members, the women decided to ban together and finally bring Endometriosis to light. Their hope is that by yellow profile pictures taking over social media, they will start a conversation about Endometriosis outside the “endo community” and spread awareness and understanding about their uncommonly known disease.
It’s FRIDAY! We made it through another week! And do you know what that means? FEEL GOOD FRIDAY!!!
Today’s Feel Good quote is brought to you by an American consultant, author, and speaker, Dr. Asa Don Brown:
“Allow yourself to be an anchor and anchored by others.”
Inspired by my personal meeting with an EndoSister, which showed me how truly important a support system is. And this goes for ANYONE! Not just us with Endometriosis. Be there to support, but also accept the support of others. We are all in this together, and are all there for one another.
(And yes, my first thought with “Anchor” was Popeye the Sailor Man. So eat your spinach…and be strong!)
Aubree was 29 when she was diagnosed with Endometriosis. Now 33, she lives in Colorado and has found not only acceptance of her disease, but peace. And she’s found her healing through self-love and a natural holistic approach. She has even written a book about her journey and her path to inner-peace and healing.
Aubree’s Journey: I suffered with extremely painful periods from the very beginning. I complained about them for years to my doctors, but nobody really paid them much attention. One of my family doctors prescribed me Ibuprofen, but this didn’t touch the pain.
When I was 17, I started on birth control pills, which helped control the pain, so I continued to stay on them for the next ten years, with little thought to the effect they were having on my body. In addition to painful periods, I suffered with migraines and constant fatigue as a teenager and young adult. I got a headache just about every day. To resolve, I popped a Tylenol or Ibuprofen. I was often bloated and suffered at times with awful, embarrassing gas and stomach pains.
I decided to get off of birth control late in my twenties. I wanted to see what life was like without the added hormones. This decision awakened me to a whole new kind of pain. My periods became excruciating again and the pain extended past those times. I was suffering almost every day. I was exhausted, bleeding irregularly and had awful pain after sex. I also started to have bladder pain. I missed days of work when my period started. My co-worked suggested that I could have endometriosis. I had no idea what that was. I started to do research on it and spent some time reading posts in discussion groups. I definitely had all the symptoms.
I sought out an endometriosis specialist and was officially diagnosed via laparoscopy in April 2011. I fell into a deep depression. I was told that there was no cure for endometriosis and that my symptoms were only going to get worse and compromise my fertility. I stressed out about all of it and cried quite often. The daily pain and emotional aspects were very draining. Having read all the negative things about Lupron, I decided not to go down that route. The specialist told me that I was left with two options: get back on the pill or get pregnant as soon as possible. I didn’t want to get back on the pill. Pregnancy was an option, but I didn’t see how this would really be possible considering just how painful sex was.
There came a point when my inner warrior stepped up and I decided to search for another way – a way out of the pain. So I took to the Internet and continued researching. I came across stories of women with endometriosis who were able to manage their pain with diet. With little other options, I decided to give it a try. I started to follow what has been coined “the endo diet”. This was hard at first and very frustrating at times. I struggled with what to eat. The ingredients in the “avoid” list were in pretty much everything I was used to eating. But I stuck with it and I started to feel better. I incorporated more fruits and vegetables into my diet and cut out a lot of the processed foods I was used to eating. I was truly awakened to the impacts of food in my body and just how important this was for how I felt physically and mentally.
My advances in well-being started with changes in my diet, but have been maintained by managing my stress levels. One way that I do this is with Yoga. I believe Yoga has made a tremendous impact on my pain levels and it’s great for my mind, for lowering my stress levels. I’ve also incorporated a meditation practice and do my best to live in a mindful, present manner.Another thing that has helped me on my healing journey is clearing out my detoxification channels to help move out excess estrogens and other toxins from my body.
Up to this point I am down to a “day of pain” with the start of my period and it’s manageable pain. My bladder pain is gone (thank goodness). I don’t feel bloated and gassy like I used to and my headaches are pretty much gone. I’ve managed to get off of all over the counter and prescribed pain medication. I continue to struggle with infertility. I hold on to the hope that one day I will hold a miracle child in my arms. Time shall tell if this will come from my womb or another way. In the meantime I am blessed with a wonderful, supportive husband and two adorable boxers that make me laugh everyday 🙂
Words of Advice for Us: It is possible to feel better with endometriosis. Explore all options. Research and don’t be afraid to step out of the box. I think that the key to healing endometriosis comes from self-love and self-care. It is so important to nourish our bodies, minds and spirits with nutritious foods, and to spend time doing things that bring joy. I also think it’s important to find creative outlets to express ourselves. Pain is inevitable, but suffering is optional. This becomes reality when we stay present with whatever arises. This process is assisted with deep breathing and an awareness of your breath. The pain that follows comes from our reactions. When we stay present with what arises, with no judgement, then its pull weakens. This state encourages a sense of peace and clarity, but it definitely takes some practice 🙂 I’ve learned to let a lot of things go. And I don’t get as worked up about things as I used to, because I realize that it is not worth it to put my body under stress for circumstances that many times are out of my control. For the things that really matter that are out of my control… I pray… to a greater love and presence that I believe connects us all. When things get bad, please remember: you are not alone.
The Last Word: I’ve shared a lot of this knowledge that I’ve gained on healing naturally in my blog at peacewithendo.com and in my first book From Pain to Peace With Endo: Lessons Learned on the Road to Healing Endometriosis.
I want to send a special Thank You out to Aubree for being brave enough to share her personal story, struggle, and victories with us today. You are a beautiful, brave, and strong woman. And thank you for sharing your path to peace and healing with the rest of us! I’m glad you found what works for you! May it work for others! ❤ Yours, Lisa.
And if YOU would like to share your story, you can do so by clicking here. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.
There are several theories as to what causes Endometriosis,but nobody truly knows the exact cause. It’s all theory, conjecture, guesses – which makes finding an effective treatment and cure so difficult for the medical community. So I figured I’d lay out the most common theories for you, just in case you were curious…like I was:
Think of a backwards period. Menstrual blood in your uterus flows backward, through your Fallopian tubes, escaping out into your pelvic cavity. The endometrial cells contained in that blood stick to your pelvic cavity and organs, grow, bleed, and cause adhesions. There have been several studies on retrograde menstruation, and oddly enough not every woman who has retrograde menstruation has Endometriosis. It has doctors scratching their heads, but this appears to be the most widely-accepted explanation as to what causes Endometriosis.
You’re Born With It
Endometrial cells may have developed outside of your uterus when you were a fetus and they grow and develop throughout your life. A sort of pre-determined map of where your Endo will be, how bad the symptoms will be, and what Stage it will be. Dr. David Redwine explains more of this theory here.
Some woman in your family of close blood relation likely had Endometriosis and it’s passed down through DNA. Several studies are going on to analyze the DNA-link. If you would like to participate, feel free to look at the ROSE Study, financed by the Endometriosis Foundation of America.
Certain cells lining your abdomen and pelvic cavity develop into endometrial cells. Those cells may may grow and develop into Endometriosis.
Exposure to certain toxins, including dioxins, may encourage Endometriosis. Dioxins are a carcinogen byproduct of manufacturing pesticides, herbicides, plastics, and paper. This has caused many women to pursue a natural and healthy lifestyle, avoiding as much exposure to environmental toxins and dioxins as possible.
During surgery, endometrial cells may adhere to surgical scarring, causing further growth and symptoms to spread and occur. Endometriosis has been found in many surgical scars.
Blood Vessel & Lymph Node Transfer
Our blood vessels and lymphatic system may carry and transport endometrial cells through our bodies, transplanting them into our pelvic cavity and on organs. This may explain why Endometriosis can be found in random places like the skin, lungs, heart, and eye.
Immune System Disorder
Our immune systems may be broken, making our bodies unable to recognize our Endometriosis as a “bad growth,” rendering it unable to fight and destroy the invading cells. Many women with Endometriosis have additional issues, including immune deficiencies and disorders.
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
When I was first diagnosed with Endo, I looked for a support group in San Diego. A physical, sit-down, meet, greet, and hug support group. And I found nothing. Looking around still, I find nothing. The nearest support group is in Riverside, nearly 100 miles north of me.
I’ve got a few girlfriends that actually have Endometriosis, and it’s good to have them in my life. Bounce off ideas, bounce off of their experiences, be there for each other. It’s fantastic, but we rarely see each other with our busy lives, and talk even less, especially about Endo. I’ve got my boyfriend, my friends, and my family offering endless amounts of love, support, and encouragement, but it’s not the same (no offense, loved ones). I’m part of several online communities which offer what an in-person support group should…but again, it’s…lacking something that I crave.
But today, TODAY, I met an EndoSister, who lives about 20 minutes from me. We connected on Facebook last week and met in person tonight for food, drinks, and hugs. And OH.MY.GOD. The personal interaction, feedback, smiles, laughter, sympathetic ear, shoulder bumps, and hugs. That….thatwas what I was missing. A human touch, with my same horrible disease, someone I’ve never met, being able to open up to a complete stranger (which both of us did), it was…(insert indescribable word here)! We hung out for about an hour and a half, sharing stories of our Endo, our treatments, our diets, our hobbies, our loved ones, our dreams, and our lives. And when it was over, I feel so close to this no-longer-stranger. So close. And so NOT alone. Maybe alone isn’t the word since I haven’t felt alone since this whole Bloomin’ Uterus button & blog adventure began. But I feel so…so much more inspired, encouraged, stronger, and uplifted since having met her today.
I strongly encourage each of you (yes, I’m talking to you…) to reach out and find women near you that share this disease. (This goes for ANY disease, condition, disorder, etc. that anyone may have…) – Just having someone who has the same issues to physically share this experience with has been an amazing experience. And that incredibly warm, comforting, and understanding hug at the end of the evening: Priceless. Nearly brought me to uber-girly tears.
I look forward to our next meeting. And who knows, maybe our meetings will spawn a small San Diego-based area support group; maybe our numbers will grow.
I’m overwhelmed with emotion at this unexpected surge of…”Feel Goods.” Completely overwhelmed.
Ms. Potter, I am grateful that you had the courage to reach out and find me. You’re a brave, beautiful, and amazing woman and I truly look forward to getting to know you better. Until next time…
So, I’m going on my little Endometriosis Awareness March on March 28, 2015, with some friends (the event is growing!) around a lake in San Diego. It’s about a 5-mile trek and I need to bring some water, but don’t want to wear one of my Camelpak’s or a fanny pack with water bottles. So I hit Etsy.com and perused the goods (logged in using Goodshop.com and they donated 2.75% of my etsy purchase to the Endometriosis Foundation of America).
I’m SO excited! I found a woman who creates these beautiful sling-style water bottle carrier/holsters and she agreed to make a custom order for me! AND IT’S FINISHED! All I asked for was: could it be yellow-based with an owl and maybe a yellow ribbon on it? And *poof* she’s created this beautiful sling water bottle holder! Now I can walk hands-free on March 28th! And everywhere else I trek around with my water bottle (I’m ALWAYS thirsty these days!).
It cost me roughly $25, but it’s a little piece of something that will bring me great cheer just walking around with it, and will hopefully be a conversation starter about Endo. I’m grateful to Mary for making this for me and cannot wait to receive it in the mail!
If you’d like your own water bottle carrier (or even see what she’s got pre-made), please feel free to contact Mary Truitt at her Etsy Shop, Seaside Siren, here.
It’s the little things that make me smile. And it’s those little things that matter.
When I was a young girl, I was at an all-female Christian conference with my mother. All of the children were asked to sit in the front row, away from their mothers (I think so the parents could focus without distraction). Anxious to be away from my Mum, I flopped in half in my chair, arms around my waist, dangling my head between my knees so I could at least see my Mum’s shoes a few rows behind me. The woman who was speaking at the conference stopped what she was saying, and (in front of EVERYONE) placed her hand on my head and prayed that God would take away my period cramps…and also from that day forward, that I wouldn’t have any period cramps. Ever. I was devastated!! As a young girl in 6th grade, I hadn’t started my period yet and there were classmates sitting with me. Dev-a-stated. Anyway, needless to say, her prayers were not answered and my cramps were horrible, and I had a time in my life where I thought God was mad at me personally. Or punishing me for my reaction to that woman’s prayers. I’ve since let all of that go, but man, what a mess it made on a child’s psyche.
So here’s the stuff I heard about my pain while I was growing up and through my adulthood until my diagnosis. Do I blame anyone for not “catching” my Endometriosis sooner? No. Blame anyone for not looking further into my pain? Not really. Hell, I thought it was normal! It just…is. And it’s definitely all in the past. I’m not casting blame on any of my family, friends, or physicians for not thinking of a disease I’d never heard of before.
I’m sure some of you EndoSisters have heard similar:
“Cramps are normal during your period.”
“It’s gonna hurt…it’s just part of being a woman.”
“It’s God’s punishment to women because of Eve.” (Oh, how I despised Eve)
“I have bad cramps, too.”
“Take one of these pills every 8 to 12 hours for the pain.” (I’ve had a revolving prescription for Naproxen Sodium for the past five years…I hate pain meds and take them as little as possible)
“You must have a low pain tolerance.”
“It can’t be that bad.”
“Sex makes cramps go away.” (who the hell wants to have sex when they’re insides are screaming?)
“It hurts twice as much for you because you have two cervix.”
“If you miss anymore days from work, we’ll have to consider disciplinary action.”
Looking back now, I still think I never would have gone to my doctor just for period cramps. First, it’s an embarrassing topic of conversation and secondly, I thought they were normal. My gyno five years ago prescribed Naproxen Sodium for my “bad cramps,” but never gave any indication that something could have been wrong. I’m just ecstatic that my new gyno opened me up for cyst surgery and found the Endometriosis. Knowing it wasn’t normal gives me something to strive for. And also gives me a baseline to tell my doctor when those Killer Cramps return.
I’m severely grateful for organizations like the Endometriosis Foundation of America for their youth outreach programs. Killer cramps are NOT normal. They’re a red flag for further follow-up. Spread the word. Don’t let one more girl think it’s just supposed to be that way…The more awareness that’s out there, the quicker a diagnosis and steps can be taken.
What kind of things did you hear growing up? Or even today? Feel free to drop a comment below…
Many of you have read my blog entry Stress Levels May Affect Endo, which can be found here. In that blog, I mention Dr. Caroline Appleyard, her colleagues, and their research. Dr. Appleyard and Dr. Flores have agreed to answer some questions I’ve posed to them. The answers will trickle in as time allows, and rather wait for the entire Q&A session (which could be several weeks or months), I’ve decided to post what I receive, as I receive it. Here goes:
Q&A Session with Dr. Caroline Appleyard
Tell me a little bit about yourself.
Throughout my undergraduate, graduate and post-graduate education in Britain, Canada and the United States there was one common denominator – a lack of female role models. I have never been taught by a woman but this never stopped me from pursuing a career in science.
When I was in school I read a lot and wanted to know how things ‘worked’. I loved to make projects and design things and really enjoyed doing ‘hands-on’ type activities. I loved all my science classes at school and wanted to become an astronaut but unfortunately I had very bad eye-sight. My mother was a nurse but although I was interested in how our bodies work and what happens when things go wrong I wasn’t interested in becoming a physician. Since I loved both biology and chemistry I decided to study Physiology and Pharmacology at the University of Edinburgh and that’s when I first became involved in laboratory research. I carried out my undergraduate research project in the National Blood Blank in Edinburgh, Scotland studying purification of a coagulation factor. With this experience I wanted to understand more about how inflammation causes diseases so undertook my graduate studies at the University of Southampton in England where I carried out my experiments in tissues from patients with inflammation of the digestive tract (colitis). I received a Wellcome Trust Travel Award to train as a post-doctoral fellow in the Gastrointestinal Research Group at the University of Calgary, and followed this with a second post-doctoral fellowship at the University of South Dakota.
I moved to Puerto Rico in 1998 to set up my Gastrointestinal Research Laboratory at Ponce School of Medicine and Health Sciences in the southern part of the island. My laboratory is interested in the pathophysiological basis and consequences of inflammation within the gastrointestinal tract. We want to answer questions such as why inflammation can turn into cancer, how stress can affect the intestines, and how do the bacteria in the intestinal tract affect its function? We have several projects underway to try to elucidate the factors contributing to Inflammatory Bowel Disease, colitis-associated colorectal cancer, Irritable Bowel Syndrome and intestinal endometriosis. These chronic gastrointestinal disorders are characterized by abdominal pain, inflammation and alterations of bowel motility. Our laboratory uses a variety of different experimental techniques, at the whole organ, cellular and molecular level.
At my minority–serving institution I am responsible for overseeing professional development workshops, research seminars, laboratory training experiences, mentoring teams and program evaluation, as Program Director for a federally sponsored graduate training program and the Co-Leader of the Training/Career Development Core for our Cancer Center Partnership with the Moffitt Cancer Center in Florida. I have personally trained and mentored over 80 students (undergraduate, master’s, and doctoral) in my laboratory. I have a great deal of interest in helping the next generation of scientists develop, and hope to offer a positive female role model, so that all students interested in science can fulfill their potential. As a long-time member of the American Physiological Society (Women in Physiology Committee 2010-2013) and the current President of the Puerto Rico Physiological Society, I have helped organize several outreach activities at the high school level.
I feel that my unique experience and viewpoints, having been exposed to different cultures, gives me a strong understanding of the ‘obstacles’ that women and minorities still face in science. I have also dealt with the challenges of balancing a young family with work and hobbies (my own favorites are scuba-diving, running and skiing), and I look forward to offering what advice I can to others.
Do you have Endometriosis?
If not, what got you interested in studying Endometriosis?
My background is in inflammation of the intestinal tract which I have been studying since I was in graduate school, specifically focused towards Inflammatory Bowel Disease (or colitis). When I started working at Ponce School of Medicine (officially now called Ponce Health Sciences University) through informal discussions with one of my colleagues, Dr. Idhaliz Flores, we began to recognize that there appeared to be many similarities in the immunopathology between colitis and endometriosis.
This led to us proposing a project studying the similarities and differences in the involvement of an inflammatory mediator and its receptor (tumor necrosis factor alpha) in the two conditions. We used molecular profiling to validate the use of our models in an effort to identify novel therapeutic and diagnostic targets. Around the same time I was becoming increasingly interested in the area of neurogastroenterology, since stress is known to impact the pathophysiology of colitis, and my laboratory had some ongoing projects looking at the effects of stress on inflammation in colitis and irritable bowel syndrome. We were also fortunate to have some colleagues working in my department who are neuroscientists by training. A natural extension of this was then to extend these studies into endometriosis.
What has been very enlightening for me during these past years is how many women, and younger girls, suffer from this condition, many without knowing about it for several years. My hope is that raising awareness of the impact of stress on chronic pain conditions such as endometriosis, highlights the potential for the use of complementary therapies working alongside standard medicines to help empower the patients.
I want to thank Dr. Appleyard for taking the time to answer these questions, and look forward to receiving more in the future (and sharing them with you!). And keep up the great work!!
It’s FRIDAY! We made it another week! Today’s Feel Good Friday quote is by American author, H. Jackson Brown, Jr.:
Let perseverance be your engine and hope your fuel.
I’ve heard so many, many stories from my EndoSisters where their doctors do not believe their state of pain, say Endo is “all in their heads,” and continue to refer them out to other “specialists” bouncing them around and around the medical system to be misdiagnosed or ill-treated. To those sisters, I shout, “Persevere!” Keep pushing forward. Keeping looking for a doctor that will believe and understand you! They are out there. Push for a referral to an Endometriosis Specialist. Do not let the constant disbelief and shuffling around defeat you! For those of us who have settled into our diagnosis, persevere through the pain. Find friends and a support system to help you through it. Find natural exercise and treatments to help. Find what is right for your body.
And never lose hope. Hope that there will better treatments. Hope there will be a cure. Hope that you’ll find the right doctor for you. Hope that you’ll tailor your diet and supplements to your body. Hope to find a key support system (sticking with the car theme: your Pit Crew). Hope for a pain-free day. And one day, a pain-free life. Never. Lose. Hope.
And for those of you who many not have Endometriosis and you’ve stumbled across this post, the same goes for you. Persevere in life, and hold onto the hope for your goals and dreams. You’ll get there.
Have a wonderful Friday, and may your weekend be filled with FUN!