Share Your Story: Melissa Turner

Woman sitting on couch outside

Melissa is from New Zealand and was 19 years old when she was diagnosed with Endometriosis. She shares her story with us today. As well as tips that have helped her cope and overcome.

Melissa’s Journey: It all began with a dreadful case of a bladder infection. I remember the pain like it was yesterday. Intense swelling and no amount of going to the toilet alleviated the pain.

Worst part about it was that I was on holiday and there was no way I could get treatment without the long drive home. I had never experienced such intense pain while driving over a road bump in my life. I knew something else was going on.

I remember lying in the tub. Looking down at my body and asking it what was going on. Why do you still have pain, even though the bladder infection is all cleared up? What is going on in there? A little soft voice told me to visit a gynaecologist.

The experience of visiting the gynaecologist left me with more questions and yet a version of a diagnosis I had never heard before… endometriosis. I couldn’t even say the word, never mind understand what it actually meant in terms of my pain levels. It was just a confusing mess and the only way I could know for sure was to have surgery. I dreaded the idea of it but I also wanted an answer. Something to help me move forward.

That began a long journey with endometriosis and one that took me through 15 years of struggling. I had 7 surgeries and tried every hormone treatment and pain-killer that was offered to me. I didn’t feel any relief during that time and it felt like I was literally on a surgery merry-go-round with a new surgery booked every year and a half away from the last.

I remember waking up after the last surgery and having nobody there to hold my hand and talk me through it. It had become normal that I was in surgery again. It was nothing special. I felt a deep sadness in that moment. A sadness for all the things I had put aside because of endometriosis. A sadness for all the hours and days I had wasted in pain.

A deep yearning began that day and it shifted my whole approach to endometriosis.

It began a journey of discovering and learning more about endometriosis. To know what my personal body was needing and actually providing for it. Giving it what it needed and really honouring and taking care of myself for the first time in years.

Over the last 12 years I have transformed my experience with endometriosis. It is no longer a feature in my life. I live pain and symptom free and want more women to know that it is possible.

The key things I changed were:

  • How I fed my body. I didn’t just avoid some key culprits recommended but also focused on truly replenishing the nutrients my body was lacking.
  • I move my body daily. It can be in any form I like but it must bring me joy and feel good. No pushing through!
  • Lowering my anxiety and stress was fundamental. I looked at everything that was triggering this in my life and shifted it. If that meant someone was causing me anxiety I either shifted how I viewed them or decided to spend less time with them. I also looked at beliefs I held about myself and my body. I needed to believe healing was possible and so much of my transformation began when I found proof of this.
  • I cleaned out my body from imbalances and toxins. Not just gut dysfunction but right down to heavy metals and parasites. These things had impacted my health and I needed them out!
  • I found support and guidance from others who could show me what was possible. It had to be positive and it needed to show me a way out and not just be a self pity party.

Words of Advice for Us:  I want women to know that it is possible. We just need to provide the environment for healing.

If you wish to contact Melissa, you may email her or visit her webpage.

I want to send a special Thank You out to Melissa for being brave enough to share her personal story, struggle, and victories with us today.  And thank you for all that you do for the Endo community.  Thank you!!!


And if YOU would like to share your story, please let me know.  The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.

Yours, Lisa.

Share Your Story: Caroline

Young woman in hospital bed giving two thumbs up and smiling

Caroline was diagnosed with Endometriosis when she was 13 years old, and her fight has been a well-fought and busy one! Now 15 years old, she shares her journey with us today!

Caroline’s Journey: My name is Caroline. I am a 15 year old girl and deal with endo in everyday life. Lets start with a little info about me. I am a competitive swimmer, my team is very intense.

I was diagnosed with endo at age 13. Before endo with many doctors and tests including colonoscopy, endoscopy, MRI, cat scans and lots of ultra sounds and internal and external tests the found nothing wrong with me. I did find out I had IBS and now am on medication. We really assumed all my chronic pain was that and constipation on weekly basis.

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Share Your Story: Heather

Heahter’s biggest support through all of this: her husband

Heather was diagnosed when she was 24 years old. Now 41, she shares her Journey and what steps she’s taken to spread awareness about this disease.

Heather’s Journey:  My name is Heather Marie Kobza. I was diagnosed with Endometriosis at the age of 24. I’m 41 years old and live in Kentucky with my husband and two chihuahuas.

I’ve suffered with Endometriosis half of my life. I’ve had 5 surgeries and all were unsuccessful. I did 2 Lupron injections 8 years ago for the Endometriosis in my bowels. After the Lupron treatments my stomach completely stopped emptying and I now have a gastric pacemaker. I’m 1 in 4,000 people in the United States with a gastric pacemaker.

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Share Your Story: BMW

photos of Endosister, BMW

BMW has asked that I share her Endometriosis journey with you today. She was diagnosed when she was 13 years old and is now 32. We live in the same area, so I look forward to getting to know her better!

BMW’s JOURNEY: 

Where to begin… As I lay curled up in the fetal position holding my stomach with one hand typing with the other. I find myself just wanting to talk to someone anyone… Wait no not anyone someone who understands. I’m in pain.

And not take a ibuprofen and lay down pain. But mental and physical anguish.

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Purging my fears

Skull with gears instead of brain

As you know, this blog isn’t just a place for me to research and write about Endometriosis, or to share stories of other EndoWarriors…but it’s also my therapy.

And today I need to just let some stuff off of my chest:

Late yesterday afternoon, I received the final official confirmation that my bowel resection surgery is all approved by my insurance company.  November 26th is 10 days away. And it’s going to happen…

Prior to yesterday’s official proclamation, I was 100% purely excited.  “Get this damn disease out of me,” has been my honest response, followed by, “I’m not scared, I’m in good hands, I’m ready.”

Now? I feel as if I need to crawl into the depths of my nerve-wracked stomach.  I want to pull all the warm darkness around me and just shiver.  I’m scared.  I want to cry.  I want it to be over with.

All of the “What Ifs” come bubbling up.

What if they don’t find anything?  Even though there are photographs of big endo lesions on my small intestines…this is still my biggest What If.

What if we need to reschedule surgery because of (fill in the blank)?

What if they find more Endo and have to take MORE of my guts than originally intended?

What if I need an ileostomy bag?

What if the surgery doesn’t resolve my current pain?

What if my bowels don’t heal right, I leak, and have to go back in?

What if I suffer from future bowel blockages due to scar tissue?

What if I don’t wake up…?

I know in my heart-of-hearts that everything will be okay.  I’m in wonderful surgical hands.  I trust my surgeons completely. They’re incredible.  I’ll receive great care at Scripps Memorial Hospital for a few days until I’m released. My Mum will also be with me while I’m there.  And yet I’m still fucking terrified.

I’m terrified I’ll be perceived as weak in the hospital.  There’s a specific shoulder pain that comes with abdominal surgeries that makes me howl in pain.  It’s a noise I cannot suppress…  And for days after my prior laparoscopies, I am unable to get in and out of bed alone.  I cannot sit up without help.  I can’t use the bathroom without someone to help me get up and down.  I’m sure the nurses know this and are used to it, but I’m still worried I’ll be “that patient.”

And to top it all off?  I may very well be on my period during my surgery…

When friends, co-workers, and family members ask me, “Will this surgery fix you?” – I have to take a breath.  Then I have to tell myself I’m not broken.  THEN I explain (again) that this is an incurable disease.  That I hope it fixes it for a long while.  That I hope this specific surgery removes the source of my current pain.  

One co-worker even said, “I feel so bad for you because you’ve had so many health problems over the past few years.”  I wanted to smack her and yell, “I don’t have health problems.  I have Endometriosis.”  Such a knee-jerk reaction.   But I felt like she never really listened as I explained the illness, what it can do, why it can require so much surgery.   And it just hurt.

But having to explain it over and over again gets exhausting.

I pooped today.  The third time since 6:30 this morning.  And I cannot adequately express the agony of it.  First the right side (where my constant pain is) screamed.  Then the broken glass and barbed wire scooted across my lower abdomen…where it met up with the burning side of my left lower abdomen (which burns every time I have to shit) and finally killed me on the way out with a piercing pain.  Sitting on the toilet at work, trying hard to breathe through it and not cry out while tears escape the eyes…No good. No good at all.

Ten more days of nerves, and wondering, and playing this damn game in my head.  Ten more days of constant pain.  Ten more days of just really wanting it to be over with already.

I AM scared and nervous.  I’m in good hands.  I’m ready.  And I’m excited.

9 days, 18 hours, 59minutes, and 15 seconds to go…

And for some reason, as always, acknowledging and writing out what the heck is upsetting me always does help…at least a little bit.  So, thank you for being here to read this.   

Share Your Story: Janis

Black and white photograph of blonde, smiling Janis

Janis was diagnosed with Endometriosis when she was 35.  Now 39, she shares her Journey with us:

Janis Oenbrink;  August 1, 2018

Endometriosis changes the lives of many, and in multiple ways.  Infertility, pain, fatigue, depression, and a multitude of other miserable symptoms encompass the disease of endometriosis.  I have dealt with this disease for years, and along the way, been diagnosed with Irritable Bowel Syndrome, anxiety, depression, ruptured cysts, etc.…. as well as been called crazy, lazy, and a hypochondriac.

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Share Your Story: Dannielle

Photo of Dannielle

Dannielle was diagnosed with PCOS when she was 16 and Endometriosis when she was 18 years old.  Now 19, she shares her Journey with us.  And she is a loud voice for self-advocacy!

Dannielle’s Journey:   Hello, my name’s Dannielle and honestly even though I’m young I kinda figured there had been something going on with my body.. in addition to endo, I was diagnosed with Polycystic Ovarian syndrome at 16 as well. The initial process was confusing before I had ever been diagnosed with either PCOS or endometriosis, because after seeing multiple medical professionals, some were saying it was PCOS, and some mentioned endo, only to later on figure out I have both diagnoses now.

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New Study: Endometriosis, Anxiety, and Depression

mental-health-2019924_960_720

A recent study published in New Scientist magazine discovered that mice with Endometriosis proved to be more anxious and depressed than mice that did not have Endometriosis.  Behavioural changes in the mice with Endometriosis led to this conclusion.  It is believed by the authors that Endometriosis actually reprograms the brain, but it’s unknown as to how these changes occur.

Others believe that the anxiety and depression women with Endometriosis experience may be tied to their pain and infertility issues.  They believe that the way the body perceives pain has been altered, which affects anxiety and depression.

The authors hope that their findings now instigate more research as to how Endometriosis affects the central nervous system; not just reproductive health.

I myself will be doing more research into this topic, too!  Expect more ahead!

Resources:

New Scientist (November 2017) – Endometriosis Affects the Brain

~ 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

Share Your Story: Heather

Woman standing against an ocean pier wearing a white dress

Heather was diagnosed with Endometriosis when she was 24 years old.  Now 37, she lives in Florida and has started “Heather’s Hope Endo Strong”, and is also a model advocating for chronic illness.

Heather’s Journey: I‘ve suffered with Endometriosis over half of my life. I’ve had 4 surgeries and all were unsuccessful. I did 2 Lupron injections a few years ago for the Endometriosis in my bowels. After the Lupron treatments my stomach completely stopped emptying and I now have a gastric pacemaker. I’m 1 in 4,000 people in the United States with a gastric pacemaker.

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