Stories of Others

Share Your Story: Jonnie

| Bloomin' Uterus
Woman with auburn hair wearing sunglasses and a burgundy tank top

Jonnie was diagnosed with Endometriosis when she was 20 years old. Now, 10 years later, she shares her story with us. It was a long journey before someone truly heard her. And she shares her story to encourage you to keep pushing until someone hears you, too.

Jonnie’s Journey:   I started my menstrual cycle on Friday the 13 in October of 2000. I was an avid swimmer and spent every summer competing with the neighborhood swim team. I assumed my lower back pain and fatigue was related to swimming, not my menstrual cycle.

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Share Your Story: Caroline

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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: Holly

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Text that reads "I have stayed strong. And that's exactly what I'm going to keep doing."

Holly was clinically diagnosed with Endometriosis when she was 15 years old,and received surgical confirmation two years later. Now 33 years old (and nine excision surgeries later), she shares her Endometriosis story with us today:

Holly’s Journey: Some would say I was lucky. I was 15 the first time I heard the word “endometriosis”. I had no idea what that meant for me or for my or exactly how unlucky I would be. I was a sophomore in high school and my mom had taken me to my pediatrician because I was missing time from school and complaining of pain and severe nausea surrounding my period. My pediatrician immediately said “That sounds like endometriosis.” and referred me to a gynecologist. I went to the gynecologist and he stated my symptoms were likely endometriosis and decided to put me on a birth control pill to try and help with my pain.

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Endometriosis Excision Surgery No. 6!

| Bloomin' Uterus
Pre-surgery photo with myself, Dr. Mel Kurtulus and Dr. Matthew Schultzel

On October 21, 2020, I went in for my tag-team surgery with my fellas: Dr. Mel Kurtulus and Dr. Matthew Schultzel. Each had their own specific tasks while they worked together to make sure I was happy, healthy, and well:

  1. Dr. Matthew Schultzel was going to inspect and remove a portion of my sigmoid colon which had deep-infiltrating Endometriosis (discovered during my May 2020 surgery);
  2. Dr. Mel Kurtulus was going to peek around inside to see if I had any new Endometriosis growths since May or any scarring or other things that may need to be cleaned up.

If this sounds familiar, we did a similar tag-team effort with these two amazing surgeons back in November of 2018, but for the opposite side of my colon.

The best part? I have had ZERO, zilch, nada, no pre-op pains! The only pain I’ve had since October 21st has been healing from surgery! My November pain journal screamed of the difference in my symptoms and Endometriosis pain!

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Share Your Story: Melissa

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Woman in hospital bed before surgery

At 27 years old, Melissa received her Endometriosis diagnosis. As a nurse, Endometriosis was briefly covered in her study curriculum, but she was still shocked and had so much to learn. Two years later, she is thriving with an educational blog about the disease and shares her story with us today:

Melissa’s JOURNEY:  

“I think you have endometriosis.” These words came from an initial visit with my new Ob-Gyn after seeking out some help with conceiving.

At that point my husband and I had been trying to conceive for over a year and had no luck. Something inside me always knew I would have trouble becoming a mom, but the reality of it had finally hit and I knew we needed to see someone about it . . . but I did not expect this.

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Share Your Story: Chenille

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Woman in yellow shirt and sunglasses

Diagnosed at 32 years old, Chenille shares her Endometriosis journey with us today, four years later. She’s had a total of seven surgeries for Endometriosis, including a hysterectomy and recurrent Endometriosis. And she has recently started seeing an immunologist. Hopefully this new course of treatment leads to long-lasting relief! Chenilles is sharing her story in the hopes that she can talk to others that have seen a similar journey of aggressive recurrent endometriosis.

Chenille’s JOURNEY:  

I have had a long, long journey that seems like it will never come to an end. When I was first diagnosed with stage 4 endo I was experiencing very painful, heavy menstrual cycles. Within 2 years and after 2 surgeries I had a complete hysterectomy.

I thought my battle was over. Boy was I wrong.

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Share Your Story: Kimberli

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Smiling woman dressed in yellow

After a long battle for answers, Kimberli was finally diagnosed with Endometriosis at 27 years old. Four years later, she’s forging ahead with the disease, spreading awareness, raising hopes and spirits, and supporting EndoWarriors everywhere!

Kimberli’S JOURNEY:  

I remember getting my period at age 11, one of the first out of my group of friends. Besides heavy bleeding, I didn’t think too much about anything being ‘wrong’. I was athletic, I played all sorts of sports, ate fairly healthy for a kid and was always playing outside or doing things with my friends. My immune system was pretty crappy though, I got sick a lot. Just your typical strep throat and flu type sicknesses. It wasn’t until high school, where I really started to notice some more symptoms. Bowel issues, severe headaches, horrible cramps.

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Share Your Story: N.

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A quote that reads I was happy that finally I have my answers, but I was lost

Living in Germany, N. (who shall remain anonymous) shares her Endo journey with the world today to try to help others feel not alone as well as normalize the symptoms. She was diagnosed when she was 23 years old and shares her story with us four years later.

N.’s Journey:  

Hi, I’m from India. I started having painful cramps when I was 18 years old. It was so painful that I had to take pain killers. Then after few years, I used to get cramps before and after periods too. I used to have irritable bowel syndrome during periods too.

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Share Your Story: Heather

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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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