Ending the silence. Waging the war on Endometriosis.

Month: May 2017

How-To: Survive a Flare-up

How-To: Survive a Flare-up

These are the days we all dread the most: flare-ups. There is NEVER a good time to have an endo flare-up and boy when one hits, it hits us hard! In the past 11 years that I’ve been experiencing symptoms of endometriosis I have had […]

Love Thy Lady Parts

Love Thy Lady Parts

Meet: Love Thy Lady Parts Endo Tribe is absolutely thrilled to feature Hannah Stinson’s photographic art work on Endometriosis. Hannah is a 24 year old Endo warrior that is located in Toronto, Ontario, Canada. Hannah completed her Bachelor of Design at Ryerson University School of Fashion. Hannah’s […]

Endo Education

Endo Education

Meet: Endo Education

 

Founder: Wendy

Location: Norwich, UK

Endo Tribe had reached out to Endo Education for their promoting of Endo What?  Endo Education currently is raising money to donate Endo What? tool-kits to schools that are in need of this information. Not only are they raising awareness about endometriosis, raising profits for Endo What? tool-kits, but they are also twinning with us by sharing each and every Endo Warrior story that is submitted, however this is done via Instagram. We are so excited to feature the founders story and here efforts behind it all! If you want to check out more Endo Education currently has products for sale through EndoStore.org as a collaboration where 10% of the Endo Education purchased items will go towards Endo What?

Her Story:

Hi I’m Wendy, aged 32 from Norwich, UK. 

I was diagnosed with stage 4 Endometriosis after 16 years of suffering excruciating abdominal pain. I started getting painful periods when I was 14 which stopped me from being able to attend school for at least a few days to a week each month.

My GP at the time said the pain I was experiencing was normal for my age. I started to suffer from anxiety attacks a year later. My GP said it was just added stress due to my GCSE exams.

I spent a lot of my twenties trying to explain to several different Doctors that this pain wasn’t normal. I missed a lot of work too and came close to being fired from my job because of the amount of time off work. I was put on every type of contraception during this time and my relationships with boyfriends and girl friends suffered. I became very isolated, spending more and more time on my own because I wasn’t able to go out with friends or enjoy hobbies. I had to give up my dance classes – contemporary and majorettes. I had to give up studying Fashion and Makeup Artistry also. Instead my hobbies became limited to anything I could do sitting down.

Aged 30 I became intolerant to dairy and if I got too cold I came out in an itchy rash. I suffered from night sweats, panic attacks, constant nausea, flu like symptoms, Endo belly, and caught every sickness bug going. It felt like my body was giving up on me.

I had to fight to be heard, enduring some nasty comments by medical professionals including being laughed at, given antidepressants, told it was my head that needed sorting out, I needed to get pregnant for relief and unless I was trying for a baby I wouldn’t be taken seriously.

I’m now, nearly 3 years later, recovering from surgery. When I finally found someone who would listen to me I had 2 diagnostic laparoscopies which diagnosed me with stage 4 Endometriosis, Adenomyosis and an Ovarian Cyst. The Endo was so extensive it had attached my uterus to my bowels. Due to having Adeno I decided the best option for my health was to have a full hysterectomy. At the same time I had endo excision surgery. This surgery isn’t something to be taken lightly, it can take a long time to recover from. Unfortunately there was a complication during mine which left my bladder stitched to my vagina causing a fistula to develop and has left me living with an indwelling catheter for 4-6 months.

More needs to be done for young girls to get a diagnosis early. My surgery may have been avoidable had I received an early diagnosis and had surgery to remove the disease earlier. Women need to be listened to when it’s not normal period pain.

 The drive behind it all:

It was during my recovery that I started Endo Education, an advocacy group. We are a bunch of awesome women who are fighting to get more knowledge into the hands of young girls who may be starting to have symptoms of Endometriosis. Our aim is to share our experiences in the hope it will help future girls feel less alone.

What is being done & what can you do:

We raise money for Endometriosis Charities worldwide. Currently raising money for the charity Endo What? in the US.

Think you’ve got what it takes to be an Endo Education Advocate? Please email misswendy@hotmail.co.uk to share your story of Endometriosis. Every story no matter how small is important.

Find us on Instagram @endoeducation and our Facebook group.

 

Endo Warrior: Tori Bousema

Endo Warrior: Tori Bousema

Endo Warrior: Tori Bousema Age: 27 Location: California Hi! My name is Tori and I’m 27 years old. Ever since I can remember I’ve had bad periods. I remember being a young teen and my mom rushed me to the doctor because I was in […]

World Congress on Endometriosis

World Congress on Endometriosis

Last week, from May 17 to May 20, the 13th World Congress on Endometriosis was taking place in Vancouver, Canada. I don’t know about you, but I find this to be extremely exciting. Despite the lack of public awareness in Endometriosis, there is still research […]

Pace Yourself

Pace Yourself

You could say this post is about nothing, but it is about a particular subject that shouldn’t be treated like nothing. I have been extremely sick this week, nonfunctional sick. I am making incredibly stupid mistakes, for which I probably shouldn’t be writing this in the first place. I am having memory loss and this does not even begin to describe the disturbing physical symptoms I am experiencing. Yesterday was the first time that I actually convinced myself I was too sick to function at work and left early, which is extremely rare because I save my days for emergencies, since we are all blessed with a disease with such a sporadic surprise of symptoms. I went to the doctor, where they informed me they are not sure what’s going on, but that I definitely have a viral infection and need further testing for my other symptoms. I always leave in such a rage from the doctor’s office because when I hear the words “I am not sure”, it makes me re-live my worst Endo years…

 

To get back to my subject matter, I really started getting hard on myself, since it was my week to write a post for Wednesday and I made a commitment to myself, my partner in this and you guys, that I will not let this blog fizzle off and I will provide all of the information that you guys ever hoped for and NEED. I kept saying to myself, just stay up a little later and write your damn post, but I came to realize something and that was I was not “walking the talk”. I hear myself constantly preach in my counseling sessions, to family and friends that self-care is the most important kind of care. Pshh and here I was like, “Oh, I am different. I am superwomen. I can manage taking care of myself, working full time, taking care of a home and 2 animals, but I CANNOT and should not even put myself through that.

 

My body has been in trauma for over 11 years and is now attempting to heal itself, while trying to fight off a virus and whatever else my body is secretly up to that the doctors have not figured out. Brittany, before my surgery gave me a book called “Body Kindness” by Rebecca Scritchfield and when I first started reading it I was like, “Wow Brittany, do you really thinking I have body issue?” It was focusing on the dieting aspect in the beginning and I realized after remaining open minded that I was reading the beginning all wrong. As a female, who has suffered enough trauma, I continued to be hard on myself and was not acknowledging all of the strength that I have. Strength does not mean that I have to accomplish everything in one day. I have a lifetime to work on things. I need to pace myself.

 

“You can’t hate yourself healthy. But you can choose to treat your body with kindness, love and respect throughout your life.” This quote from the book made me step back. I sat there in silence, just absorbing these simple, but powerful words. I encourage you this week to write this quote down (even take a picture of it on Instagram and tag us :)) and share your experience by reflecting on it! I know from this day forward I will be making more of an effort with self-care and knowing my limitations, so I do not wear myself too thin. Do not be afraid to tell yourself not today <3

 

Sending love and light,

Chelsea

Endo Warrior: Tori Quine

Endo Warrior: Tori Quine

Endo Warrior: Tori Quine Age: 39 Location: Sydney, Australia. “I got endo symptoms 23 years ago (1994). It took 13 years to diagnose (2007).” In high school, my monthly period pain slowly became a daily pain. A constant dull, dragging, aching pain in my pelvic area. Imagine […]

The Emotional Experience of Endo

The Emotional Experience of Endo

Chronic pain, in all its various forms, has been known to cause not only physically-debilitating symptoms, but also mentally-draining ones as well. Super lucky aren’t we? To have to manage BOTH kinds of symptoms. But, as Endo Sisters we are not alone. I, myself, have […]

Endo Warrior: Allison Shinkle

Endo Warrior: Allison Shinkle

 

ENDO WARRIOR: ALLISON SHINKLE

Age: 33  Location: MO

Diagnosis: Endometriosis-April 2016, Polycystic Ovarian Syndrome Aug-2014, Uterine Fibroids-April 2016

 

Hey all! I’m Allison Shinkle, otherwise known as Alli to most people! I’ve lived in Southwest Missouri all my life, which is good and bad; good because it’s taught me great work ethic and community pride being from a small rural farming community. The drawback to this was when it comes to medical issues and diagnosis it’s taken 15 years to finally have a proper diagnosis and that just happened to come by a random trip to the ER due to a ruptured ovarian cyst.

Let’s go back a little ways to my high school days and start there. I was an athlete and had no signs of any “female problems”. Literally everything was like clockwork, I could tell you down to the minute when my menstrual cycle was going to begin, that was until my senior year of high school. I would experience cramping and pelvic pain so bad that I couldn’t make it from one class to another and my science teacher (1st hour class) would have to write me a note for the remainder of my classes and I would stay curled in a ball under a science table in the back of the room all day long. I would go to doctor after doctor and it was always the same answer, “you’re an active athlete….your body is changing…this is normal.” My body started changing for sure and I didn’t know what was going on other than the doctors had to be wrong, right?! They were educated doctors though so I believed them and thought it was normal. So I kept quiet thru college out of embarrassment that maybe I had done something to my body over the years, I didn’t share my struggles with anyone. I became more depressed and the pain was more consistent. I was a college athlete so the struggle of pelvic pain, constant menstrual cycles, mood swings, and depression became very hard to hide when I was constantly surrounded by people. Depression and constant pain led to drinking alcohol and lots of it until I reached a scary point in my life where my best friend intervened and contacted my parents.

From that point I turned to food for comfort because I learned the extremely hard way that alcohol wasn’t going to help with the pain, discomfort, depression, and so much more that I was experiencing. I continued to have menstrual cycles that would last for months on end and stop for a day and start again for another few months. I met my husband during this time and finally after being married for 3 years I couldn’t take it the pain anymore and my husband believed me so surely there was a doctor out there that would as well. I found a GYN 20 minutes from our home and he immediately scheduled me for a DNC. He said this was going to “reset” my system and things will go back to normal. He also found a mass he wanted to biopsy and to my dismay I never received the biopsy results until 2 years later, when I requested my files. Things progressively went back to pre-DNC and eventually had worsened over the 2 years. My husband & I decided to look for a new EDUCATED doctor and found one 45 minutes from our home. This OB/GYN listened to me but blamed most my issues on my obesity, because let’s be honest when you are in constant pain and depressed: ice cream, donuts, chocolate, and cheeseburgers provide comfort! She diagnosed me, with no initial exam, with PCOS (Polycystic Ovarian Syndrome) and put me on all sort of medicines like clomid, metformin, depression meds, anxiety meds, and 3 different birth controls and nothing helped. I began to doubt her, so I stopped going to my appointments, stopped all meds, and just lived with the symptoms of whatever I had going on. I knew that she kept mentioning my weight issue so by July 2014 I got on the scale and saw that I had reached 342 lbs…holy crap that is almost 350lbs…how in the heck did that happen?!?! I decided at that moment to take things into my own hands. July 2014 a dear friend presented me with an opportunity to do the 21 Day Fix meal plan, workout plan, & drink Shakeology with her and I jumped on it—I even went as far as signing up as a Health & Fitness Coach for a discount on the product! That was a turning point in my life. I began to learn about proper nutrition and functional workouts and in doing so my symptoms seemed to ease up. The weight was slow to come off and I was still having months (like I’m talking 6 month) menstrual cycles but the symptoms were easing up the more I controlled my nutrition and workout schedule. The end of March 2016 (late Sunday evening) I was rushed to the ER with severe pelvic & ovarian pain as well as bleeding and major blood clots. The doctor on call has been one that has known our family for generations and immediately knew that I had a cyst rupture and really there was nothing he could do for me other than manage the pain. I began to tell him my story and he stopped me and said “kid I’m gonna venture to say that you have Endometriosis as well as PCOS. You need to see my buddy George, he’s a specialist.” The doctor went out and called this buddy George and came back into the room. He says he’ll see you Tuesday kid and gave me the info. I went to my first appointment with George. He listened and explained he liked to take the conservative route until I confirmed that all conservative avenues had in fact been tried over the years and still no confirmed diagnosis. Wha-laa surgery was scheduled….for the next week! Surgery was to take 30 minutes and ended up being a 2 hour surgery plus an overnight stay because of complications. A hysteroscopy, laparoscopy, & cystoscopy was preformed and I was officially diagnosed with PCOS, Endometriosis, and Uterine Fibroids along with a collapsed Fallopian tube. The news he delivered before I checked out of the hospital was not what I wanted but it could’ve been much worse. Due to the severity and uniqueness of my case the probability of having children is less than 1% and of that 1% it would be 99% likely to be a tubal pregnancy which would need to be terminated. He encouraged me to continue with my health and fitness journey because it would absolutely be beneficial in lessening the symptoms. I’m 2.5 years into my health & fitness journey and living a healthier much happier lifestyle and 1 year out from surgery and an official diagnosis. I go next week for my 1 year post-op appointment so we shall see what happens!

I have lost 120 lbs and over 50 inches and as of April 2017 I have a “normal” menstrual cycle that I completely give credit to my health and fitness plus proper diagnosis. I drink my Shakeology daily because it helps with increasing my energy level so I don’t feel fatigued, increasing my immune system so I don’t feel sick all the time and I’m putting super foods into my body, ridding my body of toxins, helps ease joint & muscles pain plus it helps with regularity which for me was one major symptom. There are days when I don’t want to workout and don’t want to eat healthy, I have even cried through workouts because 1) I didn’t want to do them or 2) I was in pain and didn’t think that I could. BUT I remember where I was and that I don’t want to put myself back in that situation where I’m overweight and can’t control the symptoms. So I suck it up and do the best that I can because that’s all you really can do! Living healthier and working out regularly has helped defeat depression, I’ve lost weight, I’ve gained confidence, allowed me to share my story with others and more importantly I’ve been able to control the symptoms related to my diagnoses. I’ve met so many others that are overwhelmed and lost because they too are facing the same medical issues and feel like they have no support. I get that completely—when all of this started 15 years ago for me these diagnoses were so rare that it was no wonder that my rural area doctors couldn’t understand and comprehend what I was telling them about my body. It still seems as if “Endo” is a taboo word and people don’t fully understand it and I’d be lying to you if I said that I fully understand it. I’m one year out from diagnosis and still learning. I’m still adjusting nutrition, I’m still learning what workouts help to relive the pelvic pain quicker than others, what natural foods help lessen the nausea and ease joint pain. It’s an ever-changing process but totally worth it!

Don’t get discourage! Don’t give up! There are more ladies than you know of out here that know exactly what you’re going through and you’re NOT alone!! I’ve met some of the bravest, kindest, and most inspiring ladies on my journey! I’m asked often if I could change my diagnosis if I would…my answer is always “NO!” God has a plan for my life and yours as well! We all go thru battles, struggles, come out with wins for a reason—I’m thankful that I’ve got the experience and story to share with others that are just beginning their journey so that maybe their journey will be a little but smoother than mine has been! The best thing about a journey is it never ends and there is always a light at the end of the next tunnel!

 

❤ Alli

Part 3: Endo & Exercise

Part 3: Endo & Exercise

Endo & Exercise “Go work out or do some exercises”, is the absolute last thing I wanted to hear. Family members or friends would suggest doing some stretches or yoga and if only they could hear what my mind was saying, “What are you, effin’ […]