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: Jenny12

quote that reads I have always had heavy, painful periods since age 9.

“Jenny12” is a 39-year-old woman living in New York. Officially diagnosed with Endometriosis five years ago, she shares her journey with us today.

Jenny12’s Journey:

I have always had heavy, painful periods since age 9. After many OBGYN’s trying different B.C. I finally had my first lap surgery 5 years ago, and was told stage IV with some adhesions on bowels that were unable to be excised. Did not really help with the pain with my periods, so I was then given Mirena, that was a huge mistake.

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Share Your Story: Zoe

Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!

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I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.

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Share Your Story: Katie

Quote: Don't give up. You know when something is wrong with your body.

Katie was diagnosed with Endometriosis when she was 19 years old.  Now 21, she shares her Journey with us.

Katie’s Journey:  Symptoms first started when I was 11 – my first ever period was agony. At age 12, I had an ultrasound which showed cysts, this was the first time I heard the word endometriosis. I went home and looked it up and everything seemed to suddenly make sense.

I was 18 by the time I finally got referred to a gynaecologist. In September of 2016, I had my first laparoscopy and got diagnosed with endo!

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Share Your Story: Erika

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After suffering from horrible periods and cramps since 13 years old, Erika 18 years old when she diagnosed with Endometriosis.  Living in Ireland, she shares her tale with us just three years later:

Erika’s Journey: This is just a short story of the life and pain I’ve been living in! My name is Erika, I’m 22 and was raised in Dublin.  I still live at home with my mother and brother seeing as its so hard to find a home at this minute in Ireland. It all started when I had my first period, I was in a lot of pain and had no clue of actually what was happening to me? All young girls oh I can’t wait for my periods to come so they would feel more mature ‘grown-up”. Where with me it was a different story completely, from my first periods all I remember was pain, very severe pain and didn’t know how to control it. 

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Reader’s Choice : Endometriosis & Bipolar Disorder

Drama masks

I was contacted by one of our readers who shall remain anonymous.  She suffers from Polycystic Ovary Syndrome (PCOS) and Bipolar Disorder.  Her OBGYN suspects she has Endometriosis; however, she had to return to college out-of-state and wasn’t able to have her diagnostic surgery.  In the meantime, her physician is encouraging her to remain on birth control pills to suppress the possible Endo symptoms.  Her symptoms are worsening…

She had heard that there may be a link between Endometriosis and Bipolar Disorder, and that it may be difficult to treat both at the same time due to complications with the medications interacting with each other, or even cancelling the medicinal effects of the pills.

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Bladder & Endometriosis

Diagram of the urinary system in humans

You’ve likely heard that Endometriosis can grow in all sorts of places inside the body.  Well, the bladder and urinary tract are no exception.  Endometriosis implants can grow on or inside the walls of the bladder or along the urethra.

Symptoms

Common symptoms patients may complain about with bladder Endo are frequently needing to pee, pain when the bladder is full, painful urination, and an urgent need to pee.  Some also suffer from blood in their urine when they’re on their cycles (may be hard to distinguish…given the natural course of what a period does…).  This urine-blood may not be perceptible to the naked eye and require a lab test.  And as usual, many EndoWarriors only have these symptoms during their periods; others have them 24/7. It should also be noted that many with bladder Endo don’t present any symptoms.

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Share Your Story : Supraneeti

Woman laying down on floor in fetal position

Supraneeti was diagnosed with Endometriosis about a year ago, and has shared her story with us today.  She lives in London and is finding creative ways of expressing herself, our disease, and it’s effect.  Her story, and music video, follow:

I am a fellow Endo-sufferer or shall we say survivor?! I am also a film director and an actress and after being in practical house arrest for more than 5 months, I decided to make a short film in style of a music video.  The most difficult part of my recovery has been the stigma attached to anything to do with lady parts.

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Shoulders for Sisters : Suicide Prevention

Shoulder for Sisters logo

Suicide and Endometriosis has been a topic heavy on my heart for the past seven months.  Am I suicidal? No.  However, last year there were several EndoWarriors who committed suicide.  And this year a few more have.  Too many.  But can easily understand their hopelessness: pain; no cure; the potential for multiple surgeries; regrowth; Western medicine, alternative medicine, natural supplements, snake oils, relief, recurrence, and the cycle starts all over again.  Not to mention a sense of being completely alone, misunderstood, misdiagnosed, mistreated by physicians, mislabeled as drug-seekers, fakers, and crazies.

I’ve been trying to think of ways that I can help. In a small way.  Or a big way.  And I’ve fallen short on ideas… But today I’ve learned of a group where Warriors with suicidal thoughts can go for help.  An old-fashioned phone-line group.  Yes, that’s right.  You can email, PM, or call someone if you need to talk.  Talk with someone who is in your shoes.  Who knows what you’re going through…because they’re going through it, too.  Understand that you are not alone, and understand that people want to listen. And help.

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