Share Your Story: Carole

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Carole was diagnosed with Endometriosis when she was 25 years old.  Now 65, she shares her Journey with us.  And quite a journey it’s been!

Carole’s Journey:   Suffered excruciating pain ever since I started my periods at age 11. Trying to describe the pain, I can only compare it to a vacuum trying to suck my uterus out of my body. I could not even walk, and everybody (even my parents) thought I was faking…Until the day I did not go to a dance because of the pain. I saw a few doctors, who all ordered D&C. Finally (thru a friend’s recommendation to her gynecologist) I was able to get an appointment to see her gynecologist at age 25. He suspected it was endometriosis and ordered a laparoscopy and it was confirmed. Finally there was a reason and a name for all my pain! I was prescribed the painkiller “Talwin” – very strong and I was somewhat “stoned” and even “hallucinated” – which rendered me unable to function for 1-2 days each month at work (better than 7 days of pain without it). Married, I was trying to get pregnant, and even with fertility pills I could not. Exploratory surgery found I had endometriosis that had squished both my ovaries and a lot on my uterus: One ovary removed; then second ovary removed; and finally uterus removed. I was 27 years old. Although most of pain was gone I still had pain with my bowel. At 35 years of age I had 6 inches of my bowels removed as endometriosis was found squishing my bowel. I was so happy to see a commercial on television that talked about it. After all those years people are finally going to believe that ENDOMETRIOSIS is real !!! Thank you.

Words of Advice:  Don’t stop talking about the pain and what it is. Get a referral to a gynecologist. I had the best, Dr. Elaine Joly (now retired) at the General Hospital in Ottawa.

The Last Word: Want to see the endometriosis commercial more!

I want to send a special Thank You out to Carole for being brave enough to share her journey with us today!!   ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  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.

Feel Good Fridays

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It’s the end of the week already?!?

So, bringing you a reason to laugh:

“Laughter is magic that dispenses clouds and creates sunshine in the soul.” 
― Richelle E. GoodrichSmile Anyway

If you’re down in the depths, try to find something to make you smile. A memory, a thought, a thing, a book, a quote, a TV show, a friend, a pet, a game, or even sleep and find it in a dream.

May you find peace.

Blogs I updated this week:

C-Sections & Endometriosis:  added a March 2018 study published in the  International Journal of Reproduction, Contraception, Obstetrics & Gynecology of a woman who had a large purple lump on her c-section scar that oozed greenish fluid during her periods.  Any guesses as to the diagnosis?

Endometriosis & the Lungs: added a March 2018 study of a woman with a collapsed lung and the positive biopsy results for Endometriosis found in the pleural cavity.

Lupron Depot: My Experience:  added an update as to how I’m doing three years later, as well as a 2018 study of long-term effects of Lupron Depot use, published in the Journal of Pediatric & Adolescent Gynecology

Natural Products I’ve Fallen in Love With: added Truth Serum deodorant made by Lucky AF Club.

T-shirts, Mugs, and Stickers: OH MY!

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I’ve updated the Fundraiser page to include links to the Gofundme.com button campaign, as well as the Teespring t-shirts, mugs, and sticker sales!

Thanks to Teespring’s new Automatic Renewal feature, stickers, t-shirts, and mugs will always be available for purchase!

https://bloominuterus.com/fundraiser/

Or you can click on “Fundraiser” in the upper-right portion of your screen (or the dropdown menu if you’re using your phone)

Feel Good Fridays

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Happy Friday! I hope you had a good week.  And if not…I hope you have a better weekend!

Fridays seem to be my new “head to the bagel shop” day.  Treating myself to something delicious the last day of the week…and today’s trip to the bagel shop was a fun one.

Not only was there a Sheriff Deputy with a huge smile holding the door open for me as I went in, but there was a new guy at the counter who had an incredible sense of humor.  AND my bagel guy was working behind the counter so we got to catch up a bit before my order was ready.  Glen, the guy who usually takes my cash, was there to razz me as well.  Fun all around.  And on my way out, hot cocoa in one hand, car keys in the other, and bag-o-bagel hanging from my mouth, I mumbled, “where the hell did I park?” between my clenched teeth.  The paramedic who had held open the door for me turned around smiling, “that’s the story of my life!”  Just a wonderfully fun way to begin the workday.  I don’t know why it all struck me as wonderful, but I still can’t wipe the grin off my bagel-crusted face.

So, today’s quote:

“Stop changing yourself for the sake of other people. You shouldn’t care what strangers think and true friends won’t ask you to change.” 
― Avina Celeste

I hope you can read it, read it again, digest it…and live it.

Have an incredible weekend!!!

Love, Lisa

 

Beatin’ up a uterus pinata

 

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The pinata didn’t stand a chance…

 

Ha! A few of us gals got together and beat the crap out of a big uterus pinata last weekend. It was GLORIOUS!  Incredibly therapeutic! And incredibly messy ❤ Forgive the crappy quality…I Facebook Lived this little stunt and then downloaded it…so it’s kind of degraded 😉

 

Heating Pads & Endometriosis

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Recently, someone brought it to my attention that they’d heard that heating pads are bad for Endo. Now…I live with my heating pad literally attached to my body almost every first few days of my period.  So, I was taken aback by the suggestion as I find the heat soothing.  And I vowed to do some research on the theory that heat is bad for Endo…and, as usual, formulate my own opinion and share it with you.

Endometriosis News ran an article in August of 2017 highlighting the opinions of Melissa of EndoEmpowered and Aubree Deimler of Peace with Endo, and both discussed how heat may cause fascia to manipulate (or soften) and harden after it cools down once the heat is removed.  Aubree tried the heat elimination process to see how she felt, and felt a difference with her pain.  If you’d like to try, please follow her example.  Melissa interviewed Chris Toal of Azolla Health, who shared a downloadable brochure on the theories behind heat and fascia. Not only does Toal discourage the use of heating pads, but also the use of hot showers or baths.  Aubree directly linked back to Melissa’s article and interview.

What is fascia?  It’s a thin, fibrous tissue made up mostly of collagen that covers and supports tissue, such as muscles or organs.

From what I gather, the underlying theory expressed in the views of Endometriosis News, Melissa, and Aubree of why heat is bad for Endometriosis pain is that the heat, for lack of a better term, softens or melts the fascia tissue.  Once the heating pad is removed, the fascia rehardens and can make the pain worse.  This may cause adhesions to shift, form, and harden.  Aubree cites to Ida Rolf‘s theory regarding fascia and displacement with energy/heat/manipulation.

Visualize a brand new, unlit candle.  Once lit, the wax begins to melt.  Blow out the flame and the wax cools and rehardens, oftentimes in a new shape.  Or think of making gelatin: the mixture is liquid while hot and solidifies once it’s in the fridge and cooled off.

The fascia-altering theory is the only argument I have been able to find against using heating pads if you have Endometriosis…so:

Let’s find some proof to all of this…because, like I said, sometimes I live on my heating pad.

Ida’s theory that fascia tissue degrades with manipulation or energy is frowned upon by some.  It’s called the thixotropic effect, where the tissues degrade with heat or pressure, then reform upon settling.  Paul Ingraham wrote about his opinions in Feb. of 2013 and again Jan. of 2018 on thixotropic effect on PainScience.com and opines that fascia is simply “too tough” to manipulate in such a manner and states that Ms. Rolf found her theory to be “nonsense” as well.  Mr. Ingraham cited many studies and professionals to support his opinions.  You’re welcome to read both pieces (linked above and in the Resources section below).

But what if it’s not nonsense?  According to the Science of Slow Cooking (mmmmm…crock pot food…), collagen begins to break down and liquify into a gelatin at 160 degrees Fahrenheit.  Now, I’m no expert on the human body versus a meat-animal, but…how hot do heating pads get?!?

A study published in Safety Brief in 2015 ran a few experiments on heating pad created by Kaz (Model HP-110).  After running the heating pad for 120 minutes, it never exceeded 151 degrees Fahrenheit, uncovered.

Sunbeam offers a FAQ on their webpage about the temperature range of their heating pads: the low setting 110 degrees F and the high setting can get up to 160 degrees F.

Sew4Home conducted their own little science experiment with homemade microwaveable heating pads.  They compared rice, corn, and flaxseed.  After 30 seconds of heating, the rice was 140 degrees Fahrenheit, the corn was 158 degrees, and the flaxseed was 144 degrees.  Five minutes later, each had cooled:  136 (rice), 142 (corn), and 142 (flaxseed).

Hot water bottles should never be filled with boiling water (water typically boils at 212 degrees Fahrenheit), due to leakage and safety concerns.  Many manufacturers of hot water bottles suggest a nice, easy-to-touch temperature; not scalding.

So, I’m not sure that heating pads (electrical, microwaveable, or hot water bottles) will get hot enough to do any liquifying damage to facia.  But, then again, I’m no expert.  And several webpages promote the use of heating pads (sometimes combined with castor oil packs) to help with adhesion, Endometriosis, pelvic, or lower back pain.

So, then I was curious: why do heating pads make my pain feel better?  Once more, I hit the internet.  And, once more, ran into a lot of Mr. Paul Ingraham’s writings and voluminous cited resources, along with other webpages.

Heat may be very soothing, it increases blood circulation to the area, it may relax tense muscles, and a 2006 study found that internal heat receptors may actually block pain signals.  So, once more, heat may be good for dealing with certain types of pain.

Again, I’m not a scientist and this is just my opinion after bouncing around the internet for several hours doing research and reading.  My conclusion?

My heating pads make me feel better…and I will not stop using them.  Am I knocking Endometriosis News, Melissa, Aubree, or Chris? Nope.  Everyone is entitled to their opinion and I value a broad perspective on things.  But, for me?  I also value the comfort that a good ol’ heating pad delivers.

What about you?  My advice? Do whatever makes you feel better.  Hot, cold, or neither.  It’s your body and you know it better than anyone.

Resources:

Earth Clinic (Dec. 2017): Natural Remedies for Abdominal Adhesions

EndoEmpowered (Nov. 2016): Stop Using Hot Water Bottles for Endo Pain

Endometriosis News (August 2017): Should You Use Heat for Endometriosis Pain Relief?

Functional Fascia: Fascia Facts

Healthline: Treating Pain with Heat and Cold

LiveScience: (July 2006) Study: How Heating Pads Relieve Internal Pain

Merriam-Webster Dictionary: definition of fascia

My Health Alberta Ca Network: Adhesions Care Instructions

PainScience.com (Jan. 2018): Does Fascia Matter?

PainScience.com (Aug. 2016): Heat for Pain.  When and how to apply heat for therapy…and when not to!

PainScience.com (April 2017): The Great Ice vs. Heat Confusion Debacle

PainScience.com (Feb. 2013): Thixotropy is Nifty, but It’s Not Therapy

Peace with Endo: (Jan. 2017) Why I Stopped Using My Heating Pad for Endometriosis Pain

Safety Brief: (Jan. 2015) On the Safety of Heating Pads

Science of Slow Cooking: The Science of Slow Cooking

Sew4Home (Sept. 2014): Organic Fillers for Warming Pads: We Compare Rice, Corn and Flaxseed

Sunbeam: FAQ – How Hot do the Heating Pads Get?

Taber’s Medical Dictionary: definition of fascia

The Hot Water Bottle Shop: FAQS

University of Illinois at Urbana-ChampaignDepartment of Physics: Q&A Water Temperatures

 

~ 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

 

T-Shirt Orders: Problems? Unhappy?

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To anyone who has ordered a Bloomin’ Uterus t-shirt through our Teespring campaign and isn’t happy with the placement and/or quality of the print, please reach out to Teespring’s customer service.

I have attempted to have Teespring correct their screenprinting placement since the logo on the printed shirt is not where it is supposed to be compared to the design I submitted.

Here’s is their response,

“Thank you for keeping us in contact – I’m sorry to hear that there were issues with the orders from your campaign. Please allow me to assist you.

Regarding the order issues with your campaign, for any misprints, we ask that the person who placed the order contacts us with a photo of the order they received stating the issue of the item in the email. This way we can send the photo to our ProductionTeam for their reference, and proceed with the most suitable solution for the customer.

We ask them to directly contact us, as we can only discuss order information with the customer, and make sure that they are taken care of!

Again, I truly apologize for the inconvenience. Your patience and understanding is greatly appreciated.”

If you would like to contact Teespring about replacing your t-shirt with an attempted reprint, you may do so here:

http://teespring.force.com/NewCase?l=en_US

It is helpful to attach a screenshot of the t-shirt design off of the webpage, a photograph of the t-shirt you received, and any written instructions to fix the problem (i.e., “lower the logo by about six inches.”)  Granted, this doesn’t always work…but if you are unsatisfied with the t-shirt after a few attempts, they may offer to refund your money.

If you haven’t purchased a Bloomin’ Uterus t-shirt, tank top, or sweatshirt and would like to, feel free to do so here: https://teespring.com/bloominuterus

Free Endo Webinar

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Our good friends at the Endometriosis Family Support Group in Riverside at doing it again! Tuesday, April 17, 2018, at 6:00pm (Pacific Standard Time) they’re offering a free online webinar featuring Jillian Schurr and Jenneh Bock from The Endo Coalition.

If you’d like to log on and attend, please email Megan at Megan@RMCcharity.org.  Registration is free but required.

A huge thank you to Megan and the Endometriosis Family Support Group for all that they do!  For more information on their organization and when they meet, please click here.