Living With Endometriosis

  • Home
  • [About]
  • [What Is Endometriosis?]
  • [Support]
  • [Endo Organisations]
  • “…but have you tried…”
  • About Me
  • Alternative Medicine
  • Applying for Disability
  • Be Aware
  • Endometriosis and Menopause
  • Fallen Endo Siblings – A Memorial Page
  • Filing for Medicare health benefits
  • Filing for Social Security Disability Insurance (SSDI)
  • Hormonal Suppression
  • In The News – Pharmaceuticals Can Be Dangerous
  • Is Endometriosis A Cancer?
  • Job Discrimination
  • March is National Endometriosis Awareness Month
  • Myths About Endometriosis
  • Old Wives’ Tales
  • Online Support For Endometriosis
  • Organisations
  • Our Life In Comics
  • Pain Medication
  • Pharmaceutically-run Marketing Websites
  • Public Service Announcement
  • Research and Medical Journals
  • Surgery
  • We Are Not Seekers
  • What I Should Have Said
  • What Is Endometriosis?
  • YouTube – Endometriosis Video Blogs

10

Dec

About Me

Posted by steph 

My name is Steph. I have had Endometriosis since menses started at age fourteen. 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 a disease called 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 partner’s (now ex) insurance for the laparoscopic surgery. Thanks to his PPO insurance, I was able to see a surgeon at UCSF Mt. Zion in San Francisco.

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 continued, but at least I had an official diagnosis.

After that first surgery in 2007, I enjoyed longer stretches of time between the pain episodes (three to four weeks at a stretch, rather than eleven to fourteen days between pain flares – and this benefit only lasted about six months), but the pain episodes themselves remained excruciating, leaving me bedridden just as before.
I remember meeting with my surgeon six months post-op and crying bitterly about the pain. She said unfortunately, surgery is not a cure. It’s a form of pain management, and I’d likely be looking at more surgery in the future to remove more lesions, because endometriosis grows back.

Despite having an official diagnosis, it didn’t stop the company I worked for in the cis-male-dominated tech industry 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 went back to doing what I had done before surgery – taking vitamins, taking Chinese herbal supplements, getting acupuncture, exercising, and eating a gluten-free and yeast free diet, and seeing more specialists.

NONE OF IT HELPED. My pain levels still reached 10 on the scale, with me screaming and begging for death.

In early 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 reflection (the super thin wall of tissue separating the bladder from the pelvic sidewall) – the surgeon having told me in 2007 that she was afraid to ablate the lesions there for fear of puncturing my bladder.

In 2010, I had a second pelvic laparoscopy. This time, there were complications, and I came this close to having to have a blood transfusion. I had to stay in the hospital an extra day, and it took five weeks to recover. It was at this time that my mother finally understood that I’d been sick for a very long time with this illness.

My mother apologised to me, saying she never realised just how bad it was for me, and she cried when she heard what her mother had gone through with undiagnosed endometriosis. Now it all made sense to her – all of her mother’s miscarriages and a stillborn, and my mother having to quit school in 8th grade to stay home and help take care of her mother and siblings.
Some of my cousins came forward after that, too, speaking of the horrific pain they’d been in until they had surgery or had children. Some of my cousins were willing to talk about the pain that continued after having had children – which debunks the myth that having kids “cures” endometriosis.

The benefit from the second surgery was the same as with the first: I enjoyed longer stretches of time between the pain episodes (again; three to four weeks at a stretch, rather than eleven to fourteen days between pain flares), but the pain episodes themselves remained excruciating, leaving me bedridden.

In 2012, I began taking Gabapentin. I had benefit from this drug within a few cycles, and for the next YEAR, I was no longer bedridden from the pain!! I still had menstrual cycles and pain flares, but the pain rarely got above 6.5 on the pain scale during that first year on Gabapentin.
HOWEVER –
The side effects of Gabapentin were terrible. I could only take 200mg/day or else I would get tremors. A side effect of the drug can be epilepsy, the very condition the drug was created to combat! So, it’s not for everybody.

Beginning at the end of 2013, despite being on Gabapentin, the old endometriosis pain returned with a vengeance. I decided I wanted no further surgeries. I cannot handle the experience or the recovery time, especially now that I am alone on my own again (In 2012, my partner of 12 years cheated on me, left me for the other woman, and divorced me, stating, “I just can’t take care of you the way you need anymore”).
The pain remained until 2021 at the age of 49, and I’m not sure if it’s gone for good, yet. I’ve been in peri-menopause for the past ten or so years, but my menstrual cycle finally started dropping off in April 2020 and with it, the pain started becoming less.

It’s so emotionally and physically abusive to have to fight the pain and fight the workplace establishment that’s only concerned about their bottom line and not their employees, and fight the medical industry that’s only concerned with kickbacks from the dangerous pharmaceutical industry – for 34+ years straight, never to be heard.

May those of you with endometriosis remain strong and determined. People 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 .

I also have a Facebook page, a Twitter page, and a YouTube channel.

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. I hold an American Montessori Society (AMS) certification and taught in that field for nine years, and am currently a Fraud Analyst in the banking industry.

You can read an archive of my day-to-day personal story here, though I have not updated it as often as I used to, due to a series of relationship traumas over the past decade. I’m trying to get back to my Self again and play catch-up with this site and my endo blog. <3

Search

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

  • Endopaedia

  • 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 Siblings

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

  • EndoBlack

  • EndoQueer

  • The Endo Coalition

  • Endometriosis Foundation of America (EFA)

Symptom Tracking

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


  • PatientsLikeMe.com
    - Real-time pain mapping, monitoring,
    analysis. Community.


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

Endo Products


  • Naturally Hip
    - cloth menstrual pads

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


  • Endo Awareness swag
    - As found on Etsy

Blogroll

  • Antonia's Epic Endo Journey
  • Canadian Girl In Pain
  • Chances Our
  • Chronic Healing
  • Dear Thyroid
  • Endo Empowered
  • Endo Friendo
  • Endo Times
  • Endo Trauma
  • Endo Writer
  • Endometriosis: The Silent Life Sentence
  • Field Notes from an Evolutionary Psychologist
  • Foxy In The Waiting Room
  • Get Well blog
  • I Will Not Suffer In Silence
  • Lupron Journal
  • My Endometriosis Story – Lily Williams Art
  • My Journey With Endometriosis
  • My Life With Endo & Infertility
  • Pop Goes The Feasible
  • Reading List & Resources for chronic pain, including endometriosis
  • Resilience
  • Sallie Speaks
  • SansUterus
  • Surviving Endo
  • The Ins and Outs of Endo
  • Whispered Words …
  • Yellow Paper Dress

Categories

  • Administrative (12)
  • Alternative medicine (4)
  • Autoimmune (5)
  • Biographies (13)
  • Biology (15)
  • Black Endo Health (5)
  • Books (3)
  • Cancer risk (19)
  • Centers for Disease Control (1)
  • Chronic Pain (7)
  • Diet (9)
  • Doctors (7)
  • Endometriosis Awareness (148)
  • Featured (43)
  • Food and Drug Administration (6)
  • Government-involvement (9)
  • Heart risk (1)
  • Hormone Replacement Therapy (HRT) (3)
  • Hysterectomy (5)
  • Infertility (1)
  • Inspirational (3)
  • Insurance industry (3)
  • Malpractice (4)
  • Medical industry (5)
  • Menopause (1)
  • News article (105)
  • Outrageous (20)
  • Pain management (3)
  • Pharmaceuticals (13)
  • Pseudoscience (1)
  • Research (75)
  • Suicide (2)
  • Support and networking (8)
  • Tips and advice (11)
  • Trans Health (8)
  • Uncategorized (10)
February 2023
S M T W T F S
 1234
567891011
12131415161718
19202122232425
262728  
« Mar    

Archives

  • March 2022 (9)
  • April 2021 (1)
  • March 2021 (15)
  • November 2020 (1)
  • March 2020 (2)
  • January 2020 (2)
  • March 2019 (7)
  • March 2018 (8)
  • March 2017 (12)
  • April 2016 (1)
  • March 2016 (8)
  • February 2016 (1)
  • August 2015 (1)
  • March 2015 (17)
  • December 2014 (1)
  • July 2014 (1)
  • April 2014 (2)
  • March 2014 (3)
  • May 2013 (1)
  • March 2013 (31)
  • July 2012 (1)
  • April 2012 (2)
  • March 2012 (9)
  • February 2012 (5)
  • January 2012 (2)
  • December 2011 (1)
  • November 2011 (1)
  • August 2011 (1)
  • July 2011 (1)
  • March 2011 (3)
  • January 2011 (5)
  • December 2010 (3)
  • November 2010 (1)
  • October 2010 (1)
  • September 2010 (2)
  • August 2010 (2)
  • July 2010 (2)
  • May 2010 (1)
  • April 2010 (8)
  • March 2010 (4)
  • February 2010 (10)
  • January 2010 (2)
  • December 2009 (1)
  • November 2009 (4)
  • October 2009 (2)
  • September 2009 (3)
  • August 2009 (4)
  • June 2009 (2)
  • April 2009 (2)
  • March 2009 (38)
  • February 2009 (9)
  • January 2009 (15)
  • December 2008 (12)
  • November 2008 (8)
  • January 2008 (1)

Syndication

  • Add blog to any reader

  • Comments RSS

Recent Post

  • Trans, gender-diverse people with endometriosis fight ‘double battle’ against pain and lack of recognition
  • Transgender People with Endometriosis Often Suffer in Silence
  • Font issues with the website
  • France formally recognises endometriosis as ‘long-term condition’
  • Worldwide Endometriosis March
  • 10 Research-Backed Truths About Endometriosis
  • Endometriosis patients suffering extreme pain due to pandemic treatment delays and lack of expertise
  • Endometriosis pain and epithelial neutrophil activating peptide-78 levels
  • Honouring Henrietta Lacks
  • Vaccine / menstruation study

Recent Comments

  • admin in Honouring Henrietta Lacks
  • Kathy in A Breakthrough In A Disease That No One Likes To T…
  • Jenn in Unbelievable doctors in the 21st century
  • admin in Peggy Santa Maria - a saint to endo sisters!
  • That Girl with Endo in Peggy Santa Maria - a saint to endo sisters!
  • I Will Not Suffer In Silence »… in Peggy Santa Maria - a saint to endo sisters!
  • That Girl with Endo in Peggy Santa Maria - a saint to endo sisters!
  • steph in Peggy Santa Maria - a saint to endo sisters!
  • JennM in Peggy Santa Maria - a saint to endo sisters!
  • I Will Not Suffer In Silence »… in Genetic variants on chromosome 1 and 7 more likely…
© 2008 Living With Endometriosis is proudly powered by WordPress
Designed by Roam2Rome