Feel Good Fridays

Happy end of the week! Yep, it’s Friday!

This one is for all of my EndoWarriors who step up and fight, self-advocate, share, speak out, etc.  We can do this.

“Be BOLD like a cicada-pipe the heck up” 
― Maureen Joyce Connolly, Little Lovely Things

May we be a loud chorus of support and advocacy!

Have a glorious weekend.

Love, Lisa

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!

It was July 2017 when I had the laparoscopy to laser out the endo, however my gynaecologist couldn’t do it as it had grown in difficult places and he didn’t know what he was doing, which is when I got referred to a specialist!

November 2017 I finally had the endo cut out and had the mirena coil put in, so far so good!

A few blips, but that’s to be expected!

Words of Advice for Us:  Don’t give up! You know when something is wrong with your body and do not give up going to different doctors until you find a cause of the pain and find something to try and resolve it! Keep strong 💛

The Last Word:I’m always around to have a chat if anyone would like that 💕

If you would like to email Katie, please feel free to do so.  She also has her own blog.

I want to send a special Thank You out to Katie for being brave enough to share her personal story, struggle, and victories with us today.  And congratulations on your recent engagement! I am so sorry it took me so long to share your post… and I hope you’re doing well!

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And if YOU would like to share your story, you can do so .  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Endometriosis Caused Leaking Out of a Hole by the Hip?

Drainage ditch leaking sewage

What the heck am I talking about?

There’s a study published in August of 2018 that I just read, and it threw me for a loop. So I wanted to share it with you.

A 52-year-old woman went to her Primary Care Physician because she had a weird leaking hole near her right hip.  It just drained a nasty discharge.  He put her on antibiotics for two weeks, but it didn’t resolve.  After suffering from the drainage for two months, she went to the emergency room.  If you’re curious, you can see a photograph of her little hip-hole.

Her prior medical history included a nephrectomy (the removal of one or both kidneys) and a c-section.  She also denied any changes to her bowel habits, any signs of infection, or abnormal weight loss.  She didn’t have any signs of fever, her white blood cell count was normal, her blood circulation was fine, and her abdomen was a little bit tender.

A CT scan found a “cystic lesion” near her lower right pelvic area and a fistula that exited out of her body near her right hip.  Now before I go on, I had to look up what the heck a fistula was.

In my super layman understanding? It’s a hollow tube from one place to another.  In this poor woman’s case? From her bowel to the outside of her body.  The authors classified it as an enterocutaneous fistula…You can only imagine what that discharge must have been. (Ewwww)

Due to the surprising results of the CT scan and a concern for a bowel perforation, she underwent a laparoscopy.   The cystic lesion discovered in the CT scan was “severely adhered” to her pelvic floor and to her bowels where her small intestine and her large intestine meet, aka the terminal ileum.  They removed the mass and the section of intestines in one fell swoop and the biopsy results came back as positive for Endometriosis…so she received a diagnosis of Ileal Endometriosis.  The authors of the study believe that this Endometriosis caused the enterocutaneous fistula…the hole that she had been leaking discharge from her right hip.  She was released from the hospital six days later without further incident.

Not only is this incredibly rare…it’s believed to be the first case of its kind.  So please don’t panic at every oozing sore you may have on your body.  BUT…do arm yourself with the knowledge that it can happen.

I was amazed and flabbergasted by this study.  Of course, the authors don’t opine as to how the ileal endometriosis caused the enterocutaneous fistula, but chalk that up to one of the many mysteries of our illness.

Resources:

Journal of Gastrointestinal Surgery – (Abstract; Aug. 2018) Ileal Endometriosis: a Rare Cause of Enterocutaneous Fistula  – Please contact me if you’d like to read the entire article

Inner BodyTerminal Ileum

UCSF Health – Enterocutaneous Fistula

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Feel Good Fridays

FRIDAY!!!!!!!

And what a busy one it’s been!  I know I’ve said it a lot lately, but I am so very sorry I haven’t been able to dig in and do more research. I miss having the time to be able to do that.

I will once more. I promise.

If YOU have anything you’d like me to research, please send me a question!

Take some time for yourself today. Even if it’s just a quick breather.  Step away from your tasks, your to dos, your obgligations.  Just breathe, maybe give yourself a pep talk in the mirror, remind yourself that you ARE worth it.

Always.