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: Kat

An IUD and scalpel with text that reads: "I have a decision to make: mirena or hysterectomy?"

Kat was diagnosed this year with Endometriosis at 47 years old.

Kat’s Journey:   Over the last 2 years my cycles that were getting very light and very spread out (I almost went 11 months) have been getting worse. My cycle is never the same… it will go 50 days one month and 35 the next. Sometimes I get the incredible cramping but no bleeding. When I do bleed I soak a tampon in 30 minutes. It has been like this for the last 6 months.

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Share Your Story: TR

They say sciatic Endometriosis is very rare, but TR has it. Diagnosed this year, at the young age of 24, she shares her story with us.

TRs’ Journey:   For several months I have had endometriosis in my legs and feet as well as in my bladder and lower back. My particular type of endo is the sciatica type. Every month I started feeling warm tingly pain especially in my stomach, legs and feet. Even on normal days I still had pain in my thighs. Sciatica endo is not the most commonest type of endo so answers were kind of hard to find online etc.

Words of Advice:  Persist in diagnoses.

If you would like to reach out to TR for more information about her sciatica Endo, or her journey, she’s allowed me to share her email with you today.

I want to send a special Thank You out to TR for being brave enough to share her journey with us today!!  Know that you’re not alone with your sciatic-Endo. Although rare, it does happen. I hope you’re able to find relief.  Yours, Lisa.

Paper with "tell your story" written on it

And if YOU would like to share your story,  I would love to share it on our blog.  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: Christine

Ahhh, France. I haven’t been there in years, and I do love the countryside, the people, the food, and the wine! Today, Christine shares her journey from France. Diagnosed at 46 years old, today it’s a decaded later.

Note: Christine’s story was submitted to us in French, which I don’t speak…so I’ve employed Google Translate to help (I apologize for any misinterperations)! I know it won’t be perfect. AND I’ll include her original submission, too.

Christine’s Journey:   When I was young I often had a stomach ache but we didn’t talk about endometriosis. In 2010, following crushing pains and severe inflammation, an operation was scheduled for torsion of the ovary. When I wake up I am told of a diffuse endometriosis. In 2013 recurrence with sigmoid attack. Years of hell. Late menopause at 56, I am finally released and I live again. This illness did not lead to a true initiatory journey which brought me back to basics and opened other doors for me.

(Original: Quand j étais jeune j avais souvent mal au ventre mais on ne parlais pas d endometriose. En 2010, suite a des douleurs terrassantes et une forte inflammation, une opération est programmée pour torsion de l ovaire. Au réveil on m annonce une endometriose diffuse. En 2013 recidive avec atteinte au sigmoide. Des années d enfer. Ménopausée tardivement à 56 ans, je suis enfin libérée et je revis. Cette maladie n a fait vivre un veritable parcours initiatique qui m a ramené à l essentiel et m’a ouvert d autres portes.)

Words of Advice:  Courage. With all of my love. (Original: Courage. Avec tout mon amour.)

I want to send a special Thank You out to Christine for being brave enough to share her journey with us today!!  And I absolutely love your words of advice. Courage, indeed. I’m so grateful menopause has granted you relief! ❤    Yours, Lisa.

Paper with "tell your story" written on it

And if YOU would like to share your story,  I would love to share it on our blog.  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: 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: Jonnie

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

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

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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