Share Your Story: Jazz

text that reads: "don't be afraid to ask for help. Always trust your gut. Don't be afraid to ask stupid questions."

Diagnosed in 2017, Jazz shares her Endometriosis story with us today.

Jazz’s Journey:   I am 23 and was born in Northampton, UK where I continue to live with Cerebral Palsy and Stage 1 Endometriosis. I was born with my disability and I was diagnosed with Endo in November 2017. At 16 I started the pill, Femodette, because my periods were really heavy and really painful. I was given Mefanamic Acid to help relieve the pain and it did nothing. I was taking Paracetamol and Ibruprofen and was even told to stop crying in school because “it sounded like I was giving birth.” I was given another pill to take after Femodette failed to work called Regevidon.

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Share Your Story: L. George

Text that reads "I am not sure what to do next."

L. George was diagnosed when they were 25 years old. Today, at 52, they share their arduous journey with us.

L.’s Journey:   This is really tough to tell, as I have suffered with this awful disease for so long. I barely used to notice my periods in high school. Then, around age 21, the pain became so unbearable, but I just thought it was normal period pain. I never believed in going to doctors or taking any kind of pharmaceutical medication for pain. My mom raised me to never take aspirin or go to the hospital, no antibiotics for the frequent ear infections and bronchial infections I seemed to get a lot growing up. It was not uncommon for me to have a high fever (over 105F) as a child and ‘sweat’ it out, after dealing with it for at least a week wrapped in thick blankets to make me sweat. I never took any aspirin, or other OTC for the pain I felt at age 21.

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Share Your Story: Melissa

Man and woman standing side by side

A year ago, Melissa was diagnosed with Endometriosis (at 37 years old), but her symptoms became noticeable in her 20s. It took a decade to get answers…

Melissa’s Journey:   I first noticed that something was wrong when I was in my mid 20’s. I would have extreme pain in my lower back, lots of gas, and lots of pain when going to the bathroom. I noticed that a week before my periods it would burn when I peed and that would last until a week after my period (total of 3 weeks). I also dealt with bouts of constipation and diarrhea.

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Share Your Story: Holly

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!

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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Endometriosis & the Diaphragm

Courtesy of Wikimedia

If you’ve been a long-time follower of the blog, you may remember in 2014 when my surgeon found Endometriosis on my diaphragm. Several years later, it had completely disappeared (yay!). And it hasn’t been found in any of my subsequent surgeries. This research has been a lot of fun because of my own personal journey.

We’ve previously shared Endo Lady UK‘s experience with her own diaphragmatic Endometriosis, as well as a surgery to remove diaphragmatic Endo. We’ve even had a few brave readers, Lyndsay and Tabitha, share their own stories about endo on their diaphragm.

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Share Your Story: Kimberli

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.

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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My 5th Endometriosis Excision Surgery

A drawing of a uterus, ovaries, and intestines.
Commissioned artwork by Sarah Soward

What an incredible Journey leading up to my fifth surgery!  Covid-19 postponed my surgery date by a week but, just in the nick of time, California’s governor lifted some lockdown restrictions that allowed for my surgery to move back to it’s original date of May 13, 2020. Today, June 10, 2020, marks one month since my surgery! Already! I am overjoyed with the results and the skilled hands of my surgeons.

A medical folder with "Surgery # 5" written on it
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