Share Your Story: Kat

An IUD and scalpel with text that reads: "I have a decision to make: mirena or hysterectomy?"

Kat was diagnosed this year with Endometriosis at 47 years old.

Kat’s Journey:   Over the last 2 years my cycles that were getting very light and very spread out (I almost went 11 months) have been getting worse. My cycle is never the same… it will go 50 days one month and 35 the next. Sometimes I get the incredible cramping but no bleeding. When I do bleed I soak a tampon in 30 minutes. It has been like this for the last 6 months.

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Share Your Story: Michelle

Photo of Michelle

Michelle was diagnosed with Endometriosis when 20.  Now 35, and living in La Mesa, California, Michelle shares her Endo story with us.

Michelle’s Journey: My endo story I first got my period at 10 years old. I remember I was still in elementary school, playing in PE when I got my first one. From there, my periods became increasingly more and more painful.

By 15 years old I remember rolling around on the ground in the bathroom, sometimes in so much pain that it made me throw up. I would miss school sometimes but most of the time tried to tough it out. My periods were always at least 7 days long, super heavy and lots of huge clots. I thought that was normal…..I was taught to believe this was all normal.

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Heating Pads & Endometriosis

Various heating pads

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.

(Updated March 27, 2019)

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 đŸ˜‰ Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

Pelvic Pain Solutions: Limited Time Discount!

PPS_-_Blue2BW_800x_7cfdacde-7288-4d27-bf87-cae804f0f704_1800x
http://www.pelvicpainsolutions.com

Our friends at Pelvic Pain Solutions are offering a deal for our Readers. ❤

If you’re in the market for pelvic seat cushions or pelvic therapy pads, you’ll receive 15% off by using the discount code, LW15!  But hurry…the coupon expires on November 1, 2017.

If you haven’t heard of Pelvic Pain Solution’s pelvic therapy pads, they offer hands-free hot or cold compresses: the EndoFEMM Pad, the Endo-lite Travel Pad, the  Pelvic Floor pad (which extends from pelvic bone to tailbone), and the Multi-Comfort Pad (which sounds divine: coverage of the tummy, pelvic area, lower back, and tailbone!)  I have my EndoFEMM and freakin’ LOVE it!  I wrote a little review of my experience here.  I own the full size and the travel size versions.

I’m workin’ the fitting the pelvic seat cushion into my budget, but Pelvic Pain Solutions (and other people who have purchased them) say they’re helpful for pelvic discomfort and relieving pain and tension.  I’ve recently discovered the life-changing benefits of having a lumbar pillow on the back of my chair at work at in my Jeep and have high expectations for a pelvic cushion!

Thanks, Babette, and everyone at Pelvic Pain Solutions for all that you do. ❤

Review: EndoFEMM Heating Pad

EndoFemm heating pad
Photo courtesy of Pelvic Pain Solutions

Oh man.  If you know me, you know I love my heating pads.  I have an electric one by my bed, a microwaveable one for when I’m watching TV, another microwaveable one for work, and even those ones you stick on your clothes for discreet heat.

Well, in April I received an email from Babette, the President of Pelvic Pain Solutions (and fellow EndoSister), offering me a free sample of their EndoFEMM heating pads.  If I liked it, I agreed I’d share about my experiences.  First off, I thought “free sample” meant I’d be getting like a 3″x3″ square of it so I can take it for a test drive; nope – it was the entire EndoFEMM heating pad in all it’s “Paris Girl” glory!  So, here I am today…which means I obviously liked it.

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Endometriosis : An Economic Machine

meme with Fry from Futurama holding up money. Text reads Shut up and take my money!

There are (at best guess) 176 million people born with a uterus worldwide who suffer from Endometriosis.  And it’s estimated that 5 million in the United States have Endometriosis.  1 in 10 supposedly have, or will have, this disease.  One. In. Ten.

An incurable, recurring disease which causes pain and infertility, among many other symptoms.  A revolving door disease which the “Golden Standard” of treatment is either constant prescription medications, or surgery, or both.  And, once removed, it will more than likely grow back and cause the same pain and symptoms, sometimes much worse than before.  And the only tried and true way to diagnosis the disease with with surgery!

So one thing hit me today.  This disease is a driving economic force!  What costs are associated with Endometriosis? As I live in the USA, my curiosity was toward the United States prices.  If you live elsewhere and are curious, I encourage you to figure this out.  For all of you living in the States, let’s find out together!

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Bad Gas!

mushroom cloud after explosion

As much as I’d like to giggle, I’m not talking the *funny* kind of gas.  I’m referring to the Carbon Dioxide gas trapped in your body after a laparoscopic surgery. Approximately 35-80% of patients who undergo a laparoscopic surgery complain of shoulder pain.  It is reportedly supposed to last for up to 72 hours, but some patients have the ongoing pain for longer (mine lasted a few days longer).

During a laparoscopic surgery, Carbon Dioxide is injected into our abdomens to create a distended abdomen, a big balloon, so the surgeons can look around inside without all of our crammed organs in the way.  Some of that gas remains in our systems after surgery, causing pain. There are a few theories as to what causes the post-op pain in our shoulders:

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Share Your Story : Courtney

A woman with brown hair wearing sunglasses

Courtney lives in Canada, and was diagnosed with Endometriosis a year ago, when she was 28 years old.  Now 29, Courtney makes beautiful jewelry and donates a portion of her sales to Canadian charities that deal with Endometriosis and other women’s health issues.

Courtney’s Journey:  I’m a pretty private person for the most part, and the thought of sharing my personal medical history on the internet was something that took a great deal of careful consideration on my part. But the more research I do, the more I find that the reluctance of women to share their stories is in part due to the fact that they have often spent years repeating their very personal medical details and symptoms to doctor after doctor, without getting the treatment they need. In many cases, these women are told that this is their “burden as a woman” or worse, not having their concerns taken seriously at all and told that – since the doctor can’t see anything wrong – it must be “in their head”. As personal as it is, I think it’s important for women who feel comfortable enough to do so, to share their story; if not online, at least to their family and friends, so that they may help raise awareness about this disease and help women get the care they deserve!

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Inconspicuous Pain Relief

Hypothetical, but it happens more often than not : So it’s one of those flareup, crampy days.  But you HAVE to go to work. You have to run errands. You have to face the world.  What do YOU do?  Can’t plug a heating pad in and walk around all day – you’d need one hellava long extension cord…Painkillers may not be an option for you that day.  You may need your full faculties. Lord knows I do…

So I’m exploring options as far as “inconspicuous” pain relief.

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