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10

Dec

About Me

Posted by steph 

My name is Steph. I have had Endometriosis since menses started at age 14. Nobody, including my mother, ever took me seriously when I was a teen. My mother thought I was faking the pain to stay home from school, even if I threw up from the pain. She thought Midol or 400mg of Advil would be enough to treat my pain, because it was always enough to treat her pain.

Though my mother had three sisters who also had severe period pain growing up, she just chalked it up to them being sissies, too. However, in 1996, a gynecologist told me that with the complaints I was presenting, he felt that I hit every symptom in the book for Endometriosis. It was the first I’d heard of this disease. I spent the next eleven years fighting HMO insurance red tape, just to get a laparoscopy to officially diagnose me with Endometriosis. And it wasn’t until I was 32 years old that I got my aunts, as well as my maternal grandmother, to tell me about their own battles with debilitating period pain. When I was 35 years old, I finally got approval through my fiance’s insurance for the laparoscopic surgery.

Diagnosis? Stage III Endometriosis. My left ovary had so many adhesions that it was wrapped around and stuck to the back of my uterus. Not all of the disease could be removed, because it’s also on my bladder. So the pain continues, but at least I have an official diagnosis. In 2010, a doctor examining my surgical report said that for Stage III Endometriosis, there’s not a lot of the disease – the problem is that what was there at the time of surgery was widespread and therefore difficult to completely eradicate. And of course there’s the lesions that were left on the bladder.

Despite having an official diagnosis, it didn’t stop my job from discriminating against me for being ill. I was fired for missing 1 – 3 days of work per month from this illness, despite notes from my doctor and surgeon, despite informing HR that this is an incurable debilitating illness, and despite phoning my manager each time I needed to be out of work. So I reported the company to the labor board.

After my surgery, I tried hormonal suppression in the form of a low-dose birth control pill called Yasmin. Within three months, I was suicidal and had to be taken off the pill. I have refused any form of hormonal treatment since that time, and now I’m back to doing what I did before surgery – taking vitamins, taking Chinese herbal supplements, getting acupuncture, exercising, and eating a gluten-free and yeast free diet, and seeing more specialists.

The pain remains. I remain a warrior woman fighting the pain, fighting the workplace establishment that’s only concerned about their bottom line and not their employees, and fighting the medical industry that’s only concerned with kickbacks from the dangerous pharmaceutical industry.

May you also remain strong. Women with Endometriosis need each other because we, unlike anyone else, truly understand each others’ pain and suffering.

Would you like to get in touch with me? Click here to email me, or type my email address into your Yahoo/Google/Hotmail mail account: steph [at] livingwithendometriosis [dot] org

More about me: I have a Bachelor of Arts degree in the field of Social Science from Madonna University in Livonia, Michigan. I have a minor in Education and have also studied Journalism.

You can read my day-to-day personal story here.

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Don't Have Endo? Please Read!

  • The Letter From Survivors

  • Public Service Announcement!

  • We Are Not Seekers

  • What I Should Have Said

  • "...but have you tried..."

  • Sick Humor: The top ten worst
    suggestions commonly given to
    someone with a chronic illness


  • Our Life In Comics

Important Pages

  • Research and Medical Journals

  • Myths about Endometriosis

  • YouTube Video Blogs

  • Applying For Disability

  • Be Aware!

  • Endo and Menopause

  • Is Endo A Cancer?

  • Job Discrimination

  • Fallen Endo Sisters

Mankoski Pain Scale

0 - Pain Free

1 - Very minor annoyance - occasional
minor twinges. No medication needed.

2 - Minor Annoyance - occasional
strong twinges.
No medication needed.

3 - Annoying enough to be distracting.
Mild painkillers take care of it.
(Aspirin, Ibuprofen.)

4 - Can be ignored if you are really
involved in your work, but still
distracting. Mild painkillers remove
pain for 3-4 hours.

5 - Can't be ignored for more than 30
minutes. Mild painkillers ameliorate
pain for 3-4 hours.

6 - Can't be ignored for any length of
time, but you can still go to work and
participate in social activities.
Stronger painkillers (Codeine,
narcotics) reduce pain for 3-4 hours.

7 - Makes it difficult to concentrate,
interferes with sleep. You can still
function with effort. Stronger
painkillers are only partially effective.

8 - Physical activity severely limited.
You can read and converse with effort.
Nausea and dizziness set in as factors
of pain.

9 - Unable to speak. Crying out or
moaning uncontrollably - near delirium.

10 - Unconscious. Pain makes you
pass out.

© Andrea Mankoski

Organisations

  • Endometriosis Association

  • Endometriosis Research Center

  • endometriosis.org

  • World Endometriosis Foundation

  • Center for Endometriosis Care

  • World Endometriosis Society

Symptom Tracking

  • CureTogether.com - Compare
    symptoms with people like you,
    Find treatments that work,
    Optimize your health

  • ReliefInSite.com - Real-time pain
    mapping, monitoring, analysis

  • MyMonthlyCycles.com - free
    personalized tools to track,
    monitor, and manage your
    monthly menstrual cycles!

Endo Products


  • HagRag.com - cloth
    menstrual pads

  • Lola's Loft - cloth
    menstrual pads

  • Naturally Hip - cloth
    menstrual pads

  • EndoFEMM - Microwavable
    corn-filled cloth heating pads
    (mention you saw them here
    and get 10% off your order!)

  • Bed desk - use for books,
    writing, laptop, eating while
    bedridden from the pain

Endo Blogs

  • Amanda’s Patch
  • Autoimmune Life
  • Barb’s Bumpy Ride
  • Brandzilla, living with endo & IC
  • Canadian Girl In Pain
  • Chronic Healing
  • Cure Endometriosis?
  • Dear Thyroid
  • Endo en Vogue
  • Endo Friendo
  • Endo Times
  • EndoJoanna
  • Endometriosis Interactive Support
  • Endometriosis Journey
  • Endometriosis, Among Other Things
  • Endometriosis: Facing The Battle Head On
  • Endometriosis: The Silent Life Sentence
  • Field Notes from an Evolutionary Psychologist
  • Foxy In The Waiting Room
  • Hope Garden
  • I Will Not Suffer In Silence - My continuing Endometriosis story
  • Jenny With Endo
  • Life With Endo & PCOS
  • light at the end of the tunnel
  • Lupron Journal
  • My Healing Journey
  • My Journey With Endometriosis
  • My Life With Endo & Infertility
  • Resilience
  • Sallie Speaks
  • SansUterus
  • Squidgeaboo’s Endo Blog
  • Stuff Sick People Have To Put Up With
  • Surviving Endo
  • That Girl With Endo
  • The Battle Continues…
  • The Ins and Outs of Endo
  • The Mud and The Lotus
  • Whispered Words …
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