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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The good news, the not-so-good news, and the plan!

A sheet of paper with the word PLAN written on top

Yesterday was horrendous to get through. My pain was almost always an 8 to 9 out of 10. It was SO bad I reminded me of my periods during my 20s. HORRENDOUS. In a ball, crying, and couldn’t find any relief in any position. I barely got five hours of sleep last night, but I’m at work today with my pain down in the 4-level. I can do this.

I met with my gyno/surgeon yesterday to discuss my recent ultrasound: my left cyst is shrinking! It’s down from a 2.3cm to a 1.2cm. Both he and the radiologist feel it’s a simple cyst that is resolving itself. No more need for another ultrasound in two months! YAY!

My explosive pain on Day One of my period yesterday was met with options. He cannot prescribe Tramadol (which is the only thing that works for me when Naproxen doesn’t) because it’s an opioid. So, back to those options:

  • Lupron Depot: no
  • Orilissa: no
  • Birth control pills: no
  • IUD: no
  • Depo Provera: no
  • Surgery: maybe
  • Acupuncture: I can’t afford it
  • Pelvic floor therapy: I can’t afford it
  • Pain Management doctor: yes

So, the plan: Get the referral to a pain management doctor (he recommended one and I already emailed my PCP for the referral) and see how that goes. Head on back to Dr. Kurtulus in February to discuss how things are going.

If still desired at that time, discuss another excision surgery and a hysterectomy to remove at least the cervix and uterus (they still suspect I have Adenomyosis), leave both ovaries if both can remain; remove one if one appears it needs to be removed. And excise any Endometriosis he may find, as well as adhesions an restore anatomy to its rightful place.

I was in so much pain in the appointment that I just cried. I felt like such a boob.

Today’s pain levels are much more manageable. And I just received word that this Friday’s colonoscopy is approved by my insurance, so I’m glad I didn’t take any NSAIDs yesterday.

Having a plan, even one that is so far in advance, helps with the mental aspects of coping. And I’m grateful for even that much. And thank you to everyone for your support yesterday!

PS – I love my doctor and his staff. Even though I wasn’t in my best mood and form, they were all so super supportive and positive and loving.

Share Your Story: April

Smiling woman with brunette hair and brown eyes wearing shirt that reads "Hello there."

April was diagnosed with Endometriosis when she was 30, but suffered with the pain for over 18 years before she knew what it was.  Like so many of us…Now 37, she lives in Ardmore, Canada and shares her story with us today.

April’s Journey: I was born in Georgetown Ontario in 1979, my parents and I moved to Alberta when I was 2 years old. I was a shy quiet kid growing up so and I still am quiet and somewhat shy at times lol, so it amazes me I am standing here today telling you my story.

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Share Your Story: Patti

Brunette woman wearing a white shirt standing up against a wall covered in red and green leaves

Patti was diagnosed with Stage IV Endometriosis when she was 21 years old.  Today she is 52 years young and lives in Ontario, Canada.  She continues to suffer, but holds tightly onto Hope and has a wonderful network of supportive and understanding friends and family.  Fight on, Patti.  Fight. On. ❤

Patti’s Journey: My Endometriosis Journey, By: Patricia Anne Young

One day after school, my friend invited me back to her place for a swim. We got changed, and I told her I’d meet her outside, as I had to use the washroom… little did I know I was about to become a “Woman”. I was 12…

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Share Your Story: Lakia

African American woman smiling poolside, wearing a white wrap, holding a glass of ice water, and a stuffed giraffe toy

Lakia was diagnosed with Endometriosis when she was 29 years old, after suffering with symptoms since the Sixth Grade.  Now she’s 30, living in San Diego, and she’s found our little support group.  I met Lakia just a few weeks after her diagnositic surgery and she’s recently undergone a difficult decision for her second surgery! Lakia has proven to be an amazing and incredibly strong woman, and someone I am proud to call friend.  Her story follows…

Lakia’s Journey: I always thought in my mind that my reality was normal. But what is normal? My first period was in sixth grade. I remember being so excited because I finally felt like a woman! I stuffed my bra everyday, secretly shaved my legs, and wore tinted lipgloss. But that first period felt like a rite of passage. All of the boys will like me now! Little did I know what was ahead…

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Reader’s Choice : Endometrial Polyps

Tiny mushrooms growing on a log

One of our local EndoSisters has recently been diagnosed with endometrial polyps, something I know absolutely nothing about.  So what happens when I know nothing? I research!

What is a polyp?

A polyp is an abnormal overgrowth of tissue, usually a lump, bump, or stalky growth (hence the mushrooms above).  They’re most commonly found in the colon, but can be found in the uterus (known as uterine or endometrial polyps), cervix, stomach, throat, nose, and ear canal.  There can be just one polyp…or there can be lots.

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Endometriosis in Captive Critters?

monkey in a tree
Female Mandrillus Sphinx

So we’ve previously read about a German Shepherd being diagnosed with Endometriosis. Today we’re going to talk about Mandrills (a form of primate that used to be considered a Baboon) who had been diagnosed with Endo. I’ve read a lot of previous studies where Endometriosis was purposely implanted into critters for study and dissection, but these primates weren’t for study.

There was a study from 2012 about a Mandrill that had died after showing signs of weakness and peritoneal bleeding.  Upon autopsy they found her uterus was covered in blood clots and it was stuck to her ovaries and pelvic wall.  The biopsy confirmed she had Endometriosis.  This is considered the first confirmed case of Endo in a Mandrill.

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2nd Surgery pending…

operating room set-up with da vinci surgical machine

This morning I found out Surgery No. 2 is imminent, thanks to my Endometriosis. The date will be sometime in September; I’ll know more in a few days. I met with my doctor today to discuss my ongoing symptoms and worsening pain.  After a long talk and history, an a transvaginal ultrasound (OUCH), and another looooong talk in his office: he felt it’s time to peek under the hood.  I knew going in today that the surgical option was likely it. I wish we could tell if it was present in other ways.  But nope.  My CT was normal.  My US was normal.  But, as you and I both know, it may not always show up on imaging studies.  My symptom history is what convinced him:

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