Living With Endometriosis

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20

Feb

Life update and status of this website

Posted by steph  Published in Administrative, Endometriosis Awareness

Hello, everyone. I’m sorry I haven’t been around much in the past 3 years.

It all started with this website being hijacked by hackers in 2012. It took me several months to resolve the issue and get the site back up and running again.

Merely 12 days after getting my site back up and running, the discovery of my spouse having an affair ended my world.

After that, I didn’t have much interest in updating this website, or tracking my pain symptoms in my blog, because I no longer wanted to live.

I had to be hospitalised – in the loony bin – over my emotional trauma from the affair.

And who here is surprised? Endometriosis causes 19% of relationships to end. 
So if the current stats are that 1 in 10, or approximately 176 million women worldwide have endometriosis, and endo causes 19% of relationships to end, then that’s roughly 33-34 million women worldwide who not only will suffer from endo, but who will also suffer an emotional trauma of their relationship ending, because their partner could not deal with the pain they are in.

I am a statistic. I am one in ten worldwide who have endo. I am one of those 33 million women who have been cheated on and abandoned – marriage vows violated – because my partner could not deal with living with a partner in chronic, debilitating pain. MORE THAN THAT, THOUGH, IT WAS BECAUSE HE COULD NOT HAVE SEX WITH ME AS OFTEN AS HE WANTED. We would have sex maybe 3 times a month because of my constant pain. This led him to stray from me. To add further insult – his affair was with the woman I babysat for. So on one occasion, I later found out, I was babysitting her children while she was out on a date with my husband. I suspected the affair for five months. It had actually been going on for almost a year. Fed up one night, I waited til he was asleep and checked his phone. He had been good at deleting text messages, but got lazy on that one occasion, and that’s how I was able to prove the affair.

In the aftermath of the affair, he filed for divorce while I was put on all kinds of psych meds. I finally plea bargained to be put on Gabapentin, once I realised it was also used as an antidepressant. My GYN had been trying for over a year to persuade me to take Gabapentin, so I caved in and did it so I could get out of the loony bin.

At first, I had good results from Gabapentin. My pain symptoms lessened, and for the first time in life, I wasn’t missing any work from the pain. I still had to take up to 1,200mg of Ibuprofen and sometimes Tyenol 3 on the job, but the pain was not affecting me the way it had prior to Gabapentin.

This lasted for about a year before I plateaued on the Gabapentin, and the pain seeped through. I was able to get my psychiatrist to transfer the Gabapentin prescription over to my gynecologist so that she could begin increasing dosage appropriate for treating the endo. It never worked out. I could never increase past 500mg without getting tremors in my head, neck, hands and legs. I tried to slowly increase on several occasions over another year to no avail, so finally I decided to call it quits and received permission to taper off completely from Gabapentin.

My Gabapentin story is not unique. “Although gabapentin is being increasingly prescribed to people with CPP, there is not enough evidence to say whether it is an effective treatment.”

The only thing left to manage the pain was Norco, and I did not like the side effects. I would get full-body itching, whereas on Tylenol 3, I didn’t itch as much. I always have nightmares whether on Norco or Tylenol 3 – it is a “feature” of the medication.
I fought for two years to be switched back to Tylenol 3, and finally won that battle.

But the pain remains a constant factor. Between 2012, when my world ended, and 2015, I was diagnosed with pelvic floor dysfunction, fibroids and a septated cyst on my ovary – on top of having endometriosis.

Also between 2012 and 2014, while taking Gabapentin, I developed hyperkinesia in the form of Restless Leg Syndrome.

Any doctor that ever tells you that side effects of a medication are reversible once you quit the medication IS FULL OF SHIT.
But you my darlings know that already.

My battle continues, and after nearly four years, I am ready to begin active blogging again on this site and on my public pain diary.

Thank you for your continued support over the years. I just wanted you to know why my blog has been collecting dust. It’s all too common for us to want to make a difference, to lend our voice, and yet be sidelined because of the pain. But I am still here. I’m not going away anytime soon. I am not suffering in silence, and neither should you.

no comment

20

May

Sidebar finally back up

Posted by steph  Published in Administrative

Finally, over a year after my blog was hacked, I figured out why I could no longer log into my shell account, and fixed the problem. So I say, FINALLY! I was able to go back in and find my old sidebar file and make those active on the site again.

So please, check out all the fabulous info over on the right side of this website, and let me know if there’s anything else you’d like to see on the blog!

Best regards,
Steph

no comment

23

Jul

Back once more after technical difficulties

Posted by steph  Published in Administrative

Nearly four months later, my website is, to use a Monty Python voice, “no longer infected”.

After doing two rounds with my web provider’s technical support, and selecting auto-upgrades of WordPress from there on out, my site was still being flagged as malware. It was so bad that I could not even log in. So I walked away from it.

In that time, the web provider did massive upgrades to their servers. I’ve been getting emails letting me know about it. This morning, with the latest email announcing a completed server move/upgrade, I decided to check in on my websites, and lo, they are no longer flagged as malware, AND I can log in.

So, Hello World. We start again.

no comment

11

Apr

Site update

Posted by steph  Published in Administrative

Just in time for Endometriosis Awareness month, my WordPress blogs got hacked!
I swear, it happened on the eve of March 1st.

A month was spent trying to figure out where the hack was, talking to friends, and getting help from my web provider. They ran some kind of script to clean all my files at the code level, which worked for roughly 24 hours before the hack reasserted itself, and then the web provider threw up its hands and gave me a manual on how to unhack my site myself…at the code level.

Despite the hack, I was still able to post new blog entries during the month of March, but it was a pain in the butt having to work around the hack and redirecting urls. I’m so glad that mess is cleaned up, and I hope visitors to my site were not affected by the hack. It seems to have been a back-end-only event, thankfully.

My friend Ray helped me out further by forwarding me a user discussion on the hack, since it appears to have hit globally at the end of February.

Well, I must have followed the instructions correctly, because the sites look clean, so we’re back in business.

no comment

18

Apr

New site design!

Posted by steph  Published in Administrative

I’ve known for awhile that my site is really cluttered, so I finally went and did something about it…I hope. 😉

Let me know how the new site design looks, if it is navigable, and pleasing to the eye.

If you have any question on where certain content might have gone, let me know and I’ll be happy to point you in the right direction!

Thanks so much!

no comment

5

Mar

Possible website downtime

Posted by admin  Published in Administrative

My website provider has informed me that they are moving my account to a new server soon, so if this website is unreachable, it’s only temporary – it will be back soon!

no comment

15

Dec

Comments posting to be restricted

Posted by admin  Published in Administrative

Effective immediately, I must initiate a new rule for comment posting. To try to get a handle on the hundreds of flagged spam messages I am receiving every week, I have set my blog posts to automatically close comments on articles older than 14 days.

This really upsets me to have to do this, but the spam is so bad that I’m not getting to legitimate comments by real people for two weeks to a month later.

I truly apologise to everyone who has not had a prompt reply from me, and I am sorry too that you will not be able to comment on any of my older blog posts. You can always send me an email at steph [at] livingwithendometriosis [dot] org to comment on any of my old posts.

2 comments

19

Nov

Online support groups for endometriosis

Posted by steph  Published in Administrative, Support and networking

Two days ago, I was told about another online support group out there, so I want to make mention of it – it is called MDJunction. It stands for “Making A Difference” Junction.

I joined today.

I belong to a number of online support groups for endometriosis, and I check in when I can. I hope to see you there!

no comment

5

Jan

Beware “Dr. Greg”

Posted by steph  Published in Administrative

A number of my fellow Endometriosis bloggers have been commenting upon an Internet predator, so I just wanted to take a minute here to warn anyone who comes to my site to also beware of this character.

He has not made any comments on my blog but please beware of him.

He goes by “Dr. Greg” and by “Dr. Gregory Smith”.

Word has it that he is preying on Endometriosis blogs and forums, and that he reaches out to befriend people, then sets about asking for your personal health info. From there, he launches into inappropriate sexual questions.

Always do a Google search for the person’s name or comments before granting them any requested personal information. Too often you will, sadly, find that they are spammers and/or predators. Report them immediately.

Thanks and take care, everyone!

2 comments

5

Nov

Endometriosis news updates

Posted by steph  Published in Administrative

Hello friends. I am writing to you from bed on my laptop. I’ve been bedridden on and off for the past five days, and am currently drugged silly on Tylenol 3 for the pain.

For many months now, this website has merely been a point of static information without any real updates. I am changing this. I will be using the blog feature to post whatever news stories I find on the topic of Endometriosis.

You will therefore see a flurry of articles today. I’m going to start with articles I found and began collecting in the past 12 months.

Some of these articles are years old, but I only just found them in the past 12 months, when trying to seek answers for this horrible illness.

no comment

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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

  • 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

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 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 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

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