Feel Good Fridays

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We made it through another week!  Well, two weeks, since I skipped last week due to the holidays!

Today’s quote is a simple one.  Something to take to heart and act upon.  Roy T. Bennett wrote,

“Be mindful. Be grateful. Be positive. Be true. Be kind.”

I’m going to print it out and tape it to several things to remind me…

Have a wonderful weekend.

We’ve all heard of Big Pharma…but what about Big Supp?

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A few months ago, some of us attended a workshop on hormonal treatments and Endometriosis.  It was presented by Dr. Sally Rafie of The Pharmacist’s Clinic.  We’ve all heard the term, “Big Pharma,” and the lobbyists, money, and the-big-push that comes with pharmaceuticals and their respective manufacturers.  But at this workshop, I learned of the term “Big Supp.”  And went “oooooooooooooooooooh” – never once had I thought of the machine that drives the supplement industry.  Nor the regulations that they are, or aren’t, forced to adhere to.

Someone recommends I take something? I may do some precursory research, but nothing in depth.  And I generally will try it…I am always wary of the snake oils, though – the “specifically-marketed-to-relief (fill in the blank)” pills, oils, tinctures, shakes, etc.

So, today, I delve into the dietary supplement industry.  What are the driving forces behind the industry.  What regulations, if any, exist to ensure the safety of the consumer?  Is there a great big corporate pyramid with some dark and sinister Villain perched on top?  Or is it all just clean-livin’ hippies out to help the world? Let’s find out!

“Dietary Supplements” according to the Federal Trade Commission are: vitamins and minerals, amino acids, enzymes, herbs, animal extracts, and probiotics.  The FTC put out an infographic about dietary supplements, which you can view by clicking here.

According to some sources, the supplement industry rakes in $30-120 billion a year in the US alone.  Nutraceuticals World states that the supplement industry creates 754,000 jobs and pays out $38 in salaries/wages.  And that the dietary supplement industry constantly fights the FDA’s regulations and policy change.

The US Food & Drug Administration does not regulate the supplement industry like they regulate the pharmaceutical industry.   Supplement manufacturers do not need to seek FDA approval or prove to the FDA that their products contain the ingredients they say it does, nor do they have to pass safety or efficacy tests.  They can simply put their product on the market.  Sometimes, this leads to contaminated or unsafe products.  They’re supposed to report to the FDA any adverse events (people complaining of harmful side effects, etc.).  There will be times where consumer tests may red-flag supplements and the FDA steps in, finding violations.

Dietary supplements are a political hot-bed, too.  There’s an ongoing history of political contributions, supposedly in an effort to win political favor over policy changes.  In the past, democrats have been seeking to have the supplement industry regulated like prescription drugs; however, there has been strong opposition from supplement manufacturers.  In 2015, over $3,000,000 was raised in lobbying efforts.

In 1994, the Dietery Supplement Health Education Act came into effect.  In short, dietary supplements fall under the “food” category, rather than the “medicine” category.  This means manufacturers must report all ingredients/allergens on a label, that the ingredients are safe for consumption, and that the amount of content claimed is at least as much as the amount identified on the label (it can be more).  It also means that the products aren’t held to the same standards as pharmaceuticals: safety and efficacy do not need to be proven to the FDA, nor does it need to pass an approval process.

Not only is it an under-regulated industry (regarding health claims and consumer safety), but some supplements may have negative interactions with other medications (such as antibiotics, birth control, or blood pressure medication).  Reportedly each year 23,000 people end up in the Emergency Room because of a supplement they took, and adverse reactions.  I cannot stress enough to please talk to your physician before beginning a supplement.

In 1995, the FDA created the Office of Dietary Supplement Programs.  The ODS is tasked with promoting the scientific study of dietary supplements.  They are presently working on publishing their strategic plan for 2015-2020.  The ODS’s mission statement is, “to strengthen knowledge and understanding of dietary supplements by evaluating scientific information, stimulating and supporting research, disseminating research results, and educating the public to foster an enhanced quality of life and health for the U.S. population.”

In 2006, the Dietary Supplement and Nonprescription Drug Consumer Protection Act came into existence.  Manufacturers must report any adverse events/reports to the FDA.  The FDA also encourages consumers to report any adverse events they may have while using dietary supplements.

In 2007, the Current Good Manufacturing Practices took place – invoking standards in an effort to ensure quality throughout the manufacturing, processing, labeling, and storing of supplements.  It took full effect in June 2010.

From 2008-2012, the FDA found that nearly half of the 450 manufacturers inspected violated manufacturing rules.  It could have been as simple as using the wrong phrasing on a bottle (making a claim to treat/cure a condition), having unclean manufacturing/storage facilities, or even using incorrect/undisclosed ingredients.

In 2008, over 200 people were treated for toxicity due to Total Body Formula’s supplements – it turned out that the products had 200 times the labeled dosage of selenium, as well as heightened levels of chromium, which can lead to toxicity poisoning.  Many people reported symptoms of hair loss, fingernail discoloration, muscle and joint pain, gastrointestinal issues, and many missed work because of their symptoms.  A  lawsuit was filed in 2008, and completed in 2012; however, the settlement terms were confidential.  Total Body Formula supplements were manufactured by TexAmerican Food Blending (Arkansas) and Wright Enrichment (Louisiana).  According to TBF’s attorney, Rod Cate, “They have nothing to do with the manufacturing process. [Total Body] relies upon the manufacturers to do it correctly.”  Where were the checks and balances?  Oh, that’s right : they don’t exist for the supplement industry.

In 2009, the FDA filed a complaint against Quality Formulation Laboratories, Inc.; American Sports Nutrition, Inc.; and Sports Nutrition International, LLC, for manufacturing and storing products in “filthy conditions,” which may allow allergens to enter the products.  An inspection found live (and dead) rats in the facility (including a dead rat cut in half on the blending platform), rodent urine & feces, and holes gnawed through product packaging.  The companies were also including milk ingredients in their products, but failed to disclose such on their labels – which could be a major allergen problem for some folks.  Finally, it was discovered that equipment was not cleaned between batches, allowing for contamination.  In 2010, the US District Court shut down the three businesses for their violations; however, the owners of the three businesses were continuing to operate in 2011.  They were found guilty of contempt and were each sent to Federal Prison.

In 2011, the FDA filed an injunction against ATF Fitness Products and Manufacturing ATF Dedicated Excellence, aka MADE, (both companies owned by the same man) for substituting ingredients and failing to update the labels on their products.  Additionally, they failed to report to the FDA adverse reactions/events, including one consumer suffering a heart attack.  ATF exclusively purchased their products from MADE. Some of the products they manufactured and distributed were: Sci-Fit and Nature’s Science.  In 2012, they were permanently shut down.   ATF Fitness Products filed for bankrupcy in 2012, MADE filed for bankruptcy in 2013, and Mr. Vercellotti, the individual owner of both companies, filed for bankruptcy in 2013.

In February 2015, the New York Attorney General’s office accused Walmart, Target, CVS, and GNC of selling fraudulent/dangerous supplements.  The majority of the products tested from these retailers did not contain the ingredients identified on the label.  Many also contained a majority of fillers such as powdered rice, houseplants, beans, peas, and asparagus.  For example, a ginkgo biloba supplement purchased at Walmart claimed to be gluten- and wheat-free, but ended up just containing powdered radish, houseplant, and wheat.  Ginseng pills purchased at Walgreens were made of only garlic and rice; it contained no ginseng.  Many retailers stated they were going to pull the items from their shelves.  Others stood by the integrity of the manufacturing and testing of the supplements.  GNC agreed to now use DNA barcode testing to “authenticate plants used in supplements and adopt new testing standards to prevent contamination. The agreement also imposed reforms to improve transparency for consumers and to promote consumer safety.”

Then in September 2015, the New York Attorney General’s office was at it again.  This time they found that 13 manufacturers of “devil’s claw” supplements were using the wrong plant altogether!  Some of the manufacturers included The Kroger Co. (with Vitacost.com – where I buy my supplements…crap), Now Foods, Nutraceutical International, and Nature’s Way.  Nature’s Way responded to the A.G.’s office, stating they would refund anyone who purchased their product during a certain period of time, and to employ better verification processes.

In November 2016, the FDA announced that Raritan Pharmaceuticals, Inc., had voluntarily recalled some of their homeopathic products because they might contain more Belladdona, a potentially fatal poison, than labeled or intended.  These products included baby teething tablets and a liquid ear relief treatment.

Also in November 2016, the Consumer Labs tested various potassium supplements and found one brand had arsenic present!  A daily serving of the potassium tablets was found to contain higher levels of arsenic than allowed by the EPA in a full liter of drinking water.  Think it was the cheapest available supplement?  Nope! Of all the products tested for arsenic, the potentially-toxic “winner” was the most expensive!  Unfortunately, the brand name was not made available without having a paid membership with Consumer Lab.

On December 1, 2016, the FDA announced that Ultimate Body-Tox was recalling their Ultimate Body Tox PRO tablets since it contained an undeclared ingredient: sibutramine.  Sibutramine was declared unsafe in the US in 2010 and removed from the consumer market.  It has been known to cause an increase in pulse rate and blood pressure, which may be a risk factor for those with heart problems.  Not only did their dietary supplement contain an known unsafe ingredient, but the manufacturers failed to identify the ingredient on the label!

This year, India has enacted new regulations that supplements can no longer be sold as medicinal and must feature a “health supplement” label and an advisory warning that it is not intended for medicinal use.  Furthermore, the ingredients cannot exceed daily allowances mandated by the Indian Council of Medical Research.  Supplements are also restricted by age : only people over 5-years-old may be given supplements.  These regulations are scheduled to take full effect January 2018.

New Zealand’s government is presently working on clarifying the labels used on natural health products (NHPs), as well as limiting ingredients and dosages.

How can you be sure that the supplements you’re taking are a) what they claim to be and b) safe?  Frontline put together a great list of five steps you can take to look a little deeper into your supplements.  Read their article here.   These tips also include checking the FDA’s webpage for adverse effects/reactions to the supplement(s).

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There are companies out there that independently test and vouch for dietary supplements.  ConsumerLab conducts independent tests and publishes results about many different products, including dietary supplements.  Unfortunately, you must be a member to review the results of those tests. NSF International is another company that conducts independent tests.   US Pharmacopeial Convention is a non-profit organization that tests the integrity of dietary supplements.  For a list of USP-approved supplements, click here.  These companies offer a “seal of approval” that you can find on the packaging of supplements.  Be advised, though, that  manufacturers pay these independent testers to review their products and receive that seal showing the product contains what it says it contains – it does not mean the product is safe for consumption, or that it will do what it claims.  Plus there’s always the chance for biased results when someone is paying for a service…

AND, do your own personal research.  I was told to take flax seed oil as a great Omega-3 fatty acid to help combat the inflammation of Endometriosis.  And, without research anything, I did.  I was excited to try this new thing that may help with my pain.  Did I have adverse reactions?  None that I could feel…but I did learn much later that flax seed contains phytoestrogens which may boost my estrogen levels and adversely influence my Endometriosis.  Whelp.  So I moved on to krill oil…but now I want to research ALL of the supplements I’m taking, one by one.

Also, don’t be afraid to ask your physician their opinion on products.  I told my gastroenterologist that I was taking digestive enzymes and probiotics daily.  He asked if they made me feel any better – and I let him know that I wasn’t any better or any worse.  So he suggested I stop taking them, stating that my body creates enough digestive enzymes and probiotics on their own.  So, I tried the test : stop them for a few weeks, see how I feel.  If no better or no worse, might as well save me the $30 a month that I was throwing into those supplements.  And do you know what?  I still feel great, having stopped them nearly a year ago.

I also asked my gynecologist his thoughts on resveratrol for adhesion prevention.  He believes there isn’t enough science to back the claims AND stated the dosages required would be incredibly high.  He encouraged me to save my money, maintain a healthy diet, exercise, and keep positive thoughts.  The decision was totally mine; however, and I chose to save my money.  Does this mean I’ll never buy a new supplement ever again? Hell no.  I’m presently looking into an enzyme that helps a fellow EndoSister immensely – I’m just going into this with a more informed outlook…

All that being said, though, if the supplements you are taking make you feel better, continue what you are doing!  That truly is what’s important.  But…do your homework and research! Talk to your physician.  And check for consumer complaints…

I had no idea the dietary supplement industry was so under-regulated.  I knew they weren’t held to the same approval standards, but didn’t realize it was such a free-for-all.  Do I believe Big Supp exists?  I sure do… But I shall become the informed consumer, damn it!

I hope you do, too.

*Updated December 1, 2016*

Resources:

Bankruptreport – James Vercellotti

Chicago Tribune – (Article; June 2012) Dietary Supplements: Manufacturing Troubles Widespread, FDA Inspections Show

CNN – (Article; Nov. 2016) Homeopathic Kids’ Products Recalled Due to Belladonna

Consumer Lab – (Press Release; Nov. 2016) ConsumerLab.com Finds Arsenic in Testing of Potassium Supplements

Consumer Lab – (Press Release; Nov. 2016) Seller of Mineral, Joint Supplements and More Warned for Manufacturing Violations, Drug Claims

Consumer Products Healthcare Association

Council for Responsible NutritionDietary Supplement and Food Regulations Compared

CourtDrive – ATF Fitness Products, Inc.

Federal Trade CommissionDietary Supplements

Forbes – (Article; Dec. 2011) Prison for Sellers of Dietary Products Contaminated by Rodents and Milk

Frontline – (Article; Jan. 2016) Five Questions to Ask When Considering Health Supplements

HealthWyze – (Blog; March 2010) Evaluating the Evaluators from Consumer Lab

India Today – (Article; Nov. 2016) FSSAI Sets Rules to Check Health Supplement Mis-Labeling

Inforuptcy.com – MADE

Mad in America – (Article; Nov. 2016) Have you Ever Wondered Why Labels on Suppelements are So Vague?

National Institutes of Health Office of Dietary Supplements – Dietary Supplements: What You Need to Know

National Institutes of Health Office of Dietary SupplementsMission, Origin, and Mandate

Natural Products Insider – (Blog; 2011) FDA Slams AFT for cGMP Violations

New York Attorney General – (Press Release; Sept. 2015) A.G. Schneiderman Issues Cease-and-Desist Letters to 13 Makers of Devil’s Claw Supplements Marketed to Arthritis Sufferers

New York Times – (Article; Feb. 2015) New York Attorney General Targets Supplements at Major Retailers

New York Times – (Article; Nov. 2016) Which Supplements, if Any, May be Worth Your Money

NSFDietary Supplement Safety

Nutraceuticals World – (Article; June 2016) Supplement Industry Contributes $122 Billion to US Economy

OpenSecrets – Nutritional & Dietary Supplements lobbying information

Pharmavite – (.pdf handout; 2015) How Dietary Supplements are Regulated

Pittman Dutton & HellumsTotal Body Formula no RX for Health, Sickens 197

Plainsight – (Court docket) In Re: Total Body Formula Products Liability Litigation MDL 1985

Regulatory Affairs Professionals Society – (Article; Dec. 2015) FDA Unveils New Office of Dietary Supplement Programs

ScienceBlogs – (Blog; July 2012) Dietary Supplements: Scary Substances Manufactured Under Scary Conditions

Seminole Voice – (Article; Nov. 2016) Not All Supplements are What They Claim to Be

STAT – (Blog; Nov. 2015) Experts Debate: Do We Need Tougher Regulation of Dietary Supplements?

Trib Live – (Article; May 2012) Federal Agents Mum on Raid at Closed Oakmont Factory

US Food & Drug AdministrationDietary Supplements Guidance Documents & Regulatory Information

US Food & Drug Administration – (Press Release; Nov. 2011) FDA Takes Enforcement Action Against Pennsylvania Dietary Supplement Maker

US Food & Drug Administration – (Press Release; July 2009) FDA Takes Enforcement Action Against Three New Jersey Dietary Supplement and Protein Powder Manufacturers 

US Food & Drug Administration – (Press Release; March 2008) FDA Warns Consumers About “Total Body Formula” and “Total Body Mega Formula” Distributor Recalls Dietary Supplement Products After Reports of Adverse Reactions

US Food & Drug Administration – (Database) For Consumers: Dietary Supplements

US Food & Drug Administration – (Article) How to Spot Health Fraud (interestingly enough, it’s under the “Bioterrorism and Drug Preparedness” category)

US Food & Drug Administration – (Press Release; Nov. 2016) Raritan Pharmaceuticals Inc. Issues a Voluntary Nationwide Recall of Products Containing Belladonna Extract Due to the Possibility of the Presence of Belladonna Alkaloids

US Food & Drug Administration – (Press Release; Dec. 2016) Ultimate Body Tox PRO: Recall – Undeclared Drug Ingredient

Vanguard – (Article; Nov. 2016) WARNING! Your Dietary Supplements May Not be Living Up to Their Claims

~ 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

Endometriosis & Eggs

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If you’re looking for info on Endometriosis and freezing your eggs for fertility treatments, click here.

So you may know a lot of the dietary restrictions many women choose to follow with Endometriosis.  I’ve heard “don’t eat eggs,” and “eat eggs!”  I LOVE me some eggs, so have decided to continue to devour them, but am curious as to the whole “don’t eat eggs” mentality – and it’s something I’ve never really looked into.  I’m assuming it has to do with hormones and proteins, just like red meats and dairy, but will give it a looksy today.

Before I get started, I will reiterate : your dietary restrictions may be different than mine.  What makes me feel good may make you feel worse, and vice versa.   If you don’t know how your body responds to eggs, cut them out for 3 weeks and reintroduce them…pay attention to how you feel.  Are your symptoms better? Worse? Unchanged?  It’s an individual experience.

So, are eggs bad for Endometriosis?

Some believe women with Endometriosis should eat eggs to maintain healthy levels of protein, Omega-3 fatty acids, and iron.  Others believe that eggs may contain increased hormones (for production value) or dioxins and chemicals (from the chicken feed or other contaminates), which will transfer into our bodies and feed our Endometriosis. For example, if hens are fed a soy-based feed, a small amount phytoestrogens (yes, those estrogens which effect our levels of estrogen) may transfer to the egg.    A lot of chicken feed is made with soybeans.  It’s a “Three Degrees of Kevin Bacon,” theory – but if you’re wanting to limit your intake, you may want to research what your chickens are eating…A 2016 study found that hens who were fed flax sprouts laid eggs with a higher phytoestrogen concentration than other eggs.  There’s that evil “P” word again…

Many of us EndoSisters avoid soy and flax, since it can increase our estrogen levels.  If you’d like to read more about the effects of soy or flax on Endometriosis – click here for Soy and here for Flax.

In Iran, a 2015 study found that 3%$ of commercially-sold eggs tested positive for antibiotic contaminate residue on the shells – the yolks of many of those eggs were found to be contaminated with tetracycline and aminoglycosides, making them unfit for human consumption.

Eggs are also a source of arachidonic acid, which is a pro-inflammatory Omega-6 fatty acid.  PRO-INFLAMMATORY.  Fore more info on arachidonic acid, check out this video :

However, that being said, others believe eggs are a great tool to help fight inflammation (especially when combined with a low-carb diet) because of the high Omega-3 fatty acids found in eggs.  The usual back and forth – they’re good for you, they’re bad for you, they’re good for you, they’re…

It’s been suggested that if you do eat eggs (mmmmm…eggs!), to purchase organic, free-range eggs to reduce the chances of manipulated hormones or chemical contamination.  Suggestions I’ve found?  Try to purchase “barnyard eggs,” where the hens have been fed their natural diet (worms, bugs, nasties) and not corn/soy.  However – do be wary even those options may not be good for you ( regardless of what sort of feed and treatment the hens received):

A 2016 study of home-grown chicken eggs in Tanzania found unhealthy dioxin levels in the eggs – which may have been from feed or ground contamination. A 2016 study of eggs in the Netherands and Greece found that home-raised chickens were exposed to more PFASs (man-made chemicals) than farm/factory-raised chickens and the figures may have varied due to outdoor contact and exposure to the chemicals.  Another 2016 study found that eggs from free-range chickens were contaminated with unsafe dioxin levels due to the chemically-treated wood of their hen house.  This study states, “because organic and free-range eggs are increasingly more popular among consumers who prefer to buy ‘healthy’ food, the monitoring of such products is essential to minimize the potential health risks associated with additional and unnecessary exposure to persistent organic pollutants, including dioxins.”

For a fun site which discusses differences between farm-raised, factory-raised, free-range, caged, etc. chickens/eggs, check out Wake The Wolves or Mercola.

Wanna skip out on eggs?  Try using egg substitutes when baking:  a potato starch product, arrowroot powder, psyllium seed husk, bananas, applesauce, flax seed (*runs away*), or even baking powder.  Do your research to figure out which method would be best to use as a binder for your baking needs…

So what I learned today:

  1. Eggs may be bad for Endometriosis because of the pro-inflammatory properties of arachidonic acid, an Omega-6 fatty acid;
  2. Eggs may be good for Endometriosis because of the anti-inflammatory properties of the Omega-3 fatty acids;
  3. Farm/factory-raised eggs may be contaminated with dioxins, chemicals, etc.;
  4. Free-range/cage-free raised eggs may be contaminated with dioxins, chemicals, etc.; and
  5. Phytoestrogen levels may be increased in eggs due to soy or flax in the feed.

Is your head spinning yet? Mine is.

So, all of this bad talk about eggs…and then throw in a dash of “the good talk” – what am I going to do?  Well, I love eggs too much to stop eating them, BUT I will be doing my research when it comes to brands of eggs, feeding habits, etc.  I know there’s a local egg farm near my house – I may just look into their feeding practices and buy from them.  I will likely be paying more than I am comfortable with, which may lead me to reducing my egg intake altogether (ha!).

What about you?  Gonna change your egg-eating habits at all?

Resources:

Agronomy – (Article; Feb. 2016) Organically Grown Soybean Production in the USA: Constraints and Management of Pathogens and Insect Pests

Ami Marshall – (Blog) The Endometriosis Diet: Eggs & Soy

AtkinsInflammation, Eggs and a Lower Carb Eating Program

Chemosphere – (Article; Feb. 2016) Perfluoroalkylated Substances (PFASs) in Home and Commercially Produced Chicken Eggs from the Netherlands and Greece

Diet Health Club – (Article) Endometriosis Diet, Nutrition

Dr. Lisa Watson – (Blog) The Endometriosis Diet

End of Pain – (Blog) Eggs are OK!

Endometriosis Diet – (Blog) Foods You Should Avoid

Environmental Pollution – (Article; Jan. 2016) Pentachlorophenol from an Old Henhouse as a Dioxin Source in Eggs and Related Human Exposure

Everyday Health – (Article; May 2010) Essentials of an Endometriosis Diet

Google Books – (Excerpt) Recipes for the Endometriosis Diet

HannahSmith86 – (Blog) The Endometriosis Diet

Huffington Post – (Article; Sept. 2013) Are Eggs Really Nature’s Perfect Food?

Journal of Functional Foods – (Article; April 2016) Aflalfa and Flax Sprouts Supplementation Enriches the Content of Bioactive Compounds and Lowers the Cholesterol in Hen Egg

Livestrong – (Article; June 2011) Arachidonic Acid and Inflammation

My Endo Coach – (Blog) Endometriosis Diet

Natural Fertility Info – (Blog) 5 Steps to Reversing Infertility

NutritionFacts.org – (Video) Chicken, Eggs, and Inflammation

Phoenix Helix – (Blog) My Experience with the Paleo Autoimmune Protocol

Prevention – (Article; Feb. 2016) The 10 Best Anti-Inflammatory Foods to Keep on Hand

Science of the Total Environment – (Article; May 2016) Dioxins, PCBs, Chlorinated Pesticides and Brominated Flame Retardants in Free-Range Chicken Eggs from Peri-Urban Areas in Arusha, Tanzania: Levels and Implications for Human Health

The Iranian Journal of Veterinary Science and Technology – (Abstract; 2015) A Survey of Antibiotic Residues in Commercial Eggs in Kermanshah, Iran

Today’s Dietitian – (Article; Feb. 2013) Gut Health and Autoimmune Disease – Research Suggests Digestive Abnormalities May Be the Underlying Cause

~ 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 Friday!

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Happy Friday! Whew, what an incredibly busy week it’s been! Hoping to get back into the swing of blogging next week –

But today – today it’s FRIDAY! And you know what that means!!!  I was driving to work this morning thinking of the strong EndoSisters I’ve met along this journey.  And it hit me : we are resilient.  We may have our downs, but we also have our ups.  And we don’t give up.  So today’s quote is from Chinonye J. Chidolue:

“Toss me like a dough and watch me RISE!”

I love it. It is such a simple phrase for such greatness! Flexible, moldable, resilience.  Dough may tear, but can be easily smooshed back together to become something great (and delicious!)  It is formed by kneading and heat – adversity and trials.

Rise up, you!! You incredibly resilient person.  Bounce back.  Mold yourself and become who you know you truly are.

Feel Good Fridays

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Light after Darkness by Jhong Dizon

Happy Friday!

I know a lot of you are in anguish over the election results.  Some of you are joyous.  Some of you are in physical pain today.  Others embrace a less-pained day.  It’s the weekend! Some have plans for adventure, others plan to stay in bed and snuggle the cat.

Every one one of us is different.  One thing that’s been stressed to me over the past two weeks is embracing the silver lining…in any situation.  Find the good.  Find some light in the darkness, even the smallest glint.  The silver lining.  Focus on that.  Don’t let it go.

Adam Silvera wrote,

“I’ve become this happiness scavenger who picks away at the ugliness of the world, because if there’s happiness tucked away in my tragedies, I’ll find it no matter what.”

Am I just talking politics today? No.  I’m talking politics, pain, emotions, finances, ups & downs, fears, worries, and joys – life in general.

Share Your Story : Tara

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Tara Langdale-Schmidt lives in Florida, and was diagnosed with Endometriosis when she was 11 years old! She also suffers from Vulvodynia.  Now 32, Tara invented a treatment that is helping women who suffer from pelvic pain all over the world. Today she shares her story and struggles, but also shares her victories.

Tara’s Journey: It started when I was 11 with my first surgery. Doctors did not know what was causing my abdomen pain so they the scheduled exploratory surgery. They found a huge cyst which had cut off the blood supply to ovary which killed it. They removed that ovary and tube. This was the first of many surgeries for cysts and endometriosis over the next 20 years.

Endometriosis caused pain during sex, it was an uncomfortable feeling deep inside that I became used to. My sex life was normal besides the endometriosis pain. Initial penetration was never painful until I started to experience a different kind of pain, a very sharp pain I had never felt before.

My nightmare experience with sexual pain began mildly and I started going downhill in 2010. It began as mild pain during intercourse in my vulva. As time when on, the pain became worse, it felt like someone was stabbing me with a knife and burning me at the same time. Intercourse would trigger the pain and it would still burn after having sex. Nothing helped the pain or made it go away. I only told my best friends, and they had never heard of anything like what I was experiencing. Neither had my fiancé, Jason.

I didn’t know it then, but I was suffering from the excruciating pain of Vulvodynia. The pain, both physical, emotional and mental, was agonizing, made it impossible to enjoy sexual intimacy with my future husband and impacted my quality of life for four long years. The burning and stabbing escalated and I would not have sex at all with Jason. We were getting married and probably not going to be able to have intercourse on our wedding night. I was becoming depressed over the thought of never being able to have enjoyable sex again.

My primary gynecologist told me if sex hurt to drink some wine and take Advil. That was in the beginning stages before the pain became worse. Then he realized it was serious, I still didn’t have a diagnosis and I was confused and worried about what was causing the pain. I actually asked my doctor if I had something called Vulvodynia because I found it on the internet. He agreed that is probably was Vulvodynia. He wanted me to try the numbing creams and after that he called several doctors and told me none of them had a treatment plan for Vulvodynia. He stated doctors did not know what caused it and he was sorry he couldn’t help me. I was given a prescription for Gabapentin cream and Ketamine creams. These are compounded creams, that might help the nerve pain, I was told to use twice a day. Both of these creams cost over $125 each and did not help at all. Also, I tried lidocaine injections which only lasted an hour and left me hurting from the needle. I had many surgeries for endometriosis and cysts, and one surgery they went in vaginally instead of through my abdomen. I thought that maybe the pain resulted from scar tissue. My doctor also thought it could be scar tissue as well.

After no relief with numbing creams, I decided to go to a pelvic pain specialist. He told me that I could take an antidepressant because it can help with nerve pain, do an injection or have a surgery to remove part of the vestibule that was hurting. I did not like these options. I do not like taking painkillers and especially not before sex. After suffering for so long and getting no answers I decided to take matters into my own hands. I had to take action.

From my previous positive experience using magnets to reduce back and neck nerve pain after a car accident, I had a “lightbulb moment” idea to incorporate neodymium magnets into a dilator set for pelvic pain. I used the magnetic dilators for two weeks and then had sex with my husband for the first time in months with less pain than normal. I had just starting using the dilator for the first time about three weeks prior to my wedding and I was actually able to enjoy my wedding night. I didn’t think that was going to happen. My husband, who was so supportive, was as thrilled. I was able to have sex without pain.

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Due to my reduction in pain and positive feedback after speaking to doctors about my magnetic dilator treatment and pain reduction, I knew I had no option but to create a startup company dedicated to helping other women with pelvic pain. With my personal pain issues resolved, I knew I had to help other women. Working with my good friend and business partner Robert Smithson, we together founded VuVatech, a company based in Sarasota, Fl. dedicated to helping the estimated one-in- seven women in the US who suffer from pelvic, vulvar pain. With the help of medical experts, we invented a medical device, the VuVa Magnetic Vaginal Dilator that has proven to relieve pelvic pain and sexual discomfort and has improved the lives of women seeking sexual normalcy.

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VuVa Magnetic Vaginal Dilators are a new, non-surgical approach to helping millions of women suffering from multiple pelvic pain conditions and sexual comfort. The dilator therapy can also be incorporated into treatment plans for other conditions such as Vaginismus, Vulvar Vestibulitis, Dyspareunia, Menopause, Vaginal Stenosis, Vaginal Atrophy and Vaginal Dryness. Many women suffering from these pelvic pain conditions have been placed on heavy pain medications, anti-depressants or have been advised to have invasive surgeries with low success rates.

Our VuVa Dilators offer a low cost, safe, non-invasive treatment option to renew the sexual desire and comfort women deserve. Since VuVa Dilators became available on the market in late 2015, we have only used social media, google ads and pelvic pain forums to direct traffic to our website. After selling over one thousand dilators and receiving positive feedback, it validated our decision to perform clinical trials. Clinical trials have provided beyond positive results by reducing nerve pain in subjects, so much so, that each subject purchased a set of VuVa dilators at the conclusion of the study.

Today, sex life with my husband is great. If I use the dilator twenty minutes before we have sex, I can have close to pain free intercourse. During my research I have found Vulvodynia can disappear or become less painful. I used to feel broken and now I am hopeful and thankful I have a device that allows me to have intercourse with less pain.

 

Words of Advice for Us: Using a magnetic vaginal dilator changed my sex life. My overall message to women is pain: there is hope, there are answers, you do not have to suffer. I’m a perfect example. Keep searching for what helps “You”.

If you wish to contact Tara, you can email her here.  Or you can get more information about Vuva magnetic dilators here: http://www.vuvatech.com/.  (I will be using the Vuva Magnetic Vaginal Dilators over the next several weeks and will most definitely share my results with my Readers – here’s to hoping it helps with my own painful sex experiences.  I am in no way endorsing Vuvatech or the Vuva Magnetic Dilators, but will keep you posted of my personal experiences).❤

I want to send a special Thank You out to Tara for being brave enough to share her personal story, struggle, and victories with us today.  I am so glad that we met! You are a beautiful, brave, and strong woman.  Thank you!!!  And thank you for all that you do to help women who suffer from pain.❤

 

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And 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.

October’s Winner!

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Congratulations, Debbie of New Jersey, for winning our October Coloring Contest!  You’re automatically entered to win our Grand Prize: having your design printed on a t-shirt next year!  All profits of the t-shirt sales will go to the Endometriosis Foundation of America.

If you’d like to enter our contest, a winner will be picked every month until April 1, 2017.  For more information about prizes and where to download the template(s) and enter, click here:  https://bloominuterus.com/2016/09/15/endo-coloring-contest/.  The more times you enter, the greater your chance of winning!  And the best part?  Spreading Endo awareness and having fun at the same time!  Who doesn’t like coloring?!?

Debbie shares her journey, heartfelt emotion, and encouragement with us today:

“I was diagnosed with endometriosis and adenomyosis on the operating table.  I had the classic symptoms: exceptionally heavy periods, dramatic clotting, excruciating pain…you name it, I probably had it.  But, I’d been told for years that it was just a quirk of my anatomy, so I silently dealt with it.  It was not until I was diagnosed with other issues that I finally learned the seriousness of it.

The endometriosis was, for me, just one piece of a very complex puzzle that included a subtotal hysterectomy instead of the planned total hysterectomy, due to the fact that the endometriosis had adhered my cervix to my bowel.  At the same time as the hysterectomy, I had another surgery and procedures in my abdomen, so they had to do it via an open, vertical incision.

Like others, I would imagine, I looked at the coloring pages and saw myself in them. I identified with the experience of coming out of the bathtub, a moment that has been rendered sensually in art for years, but a moment that, for me, has been simultaneously sensual and scandalously off-putting.  I used the background color and the towel to allude to my experience, and I modified the profile to more closely resemble my own.  I added my abdominal scar, which is now a part of my profile.

I hope that in 10 years we will no longer see women having experiences like my own.  Needless to say, proper treatment for endometriosis is a vital part of that.  Personally, I hope that my story makes a difference in the lives of others.  It has been difficult to write what so few have known, so that is my first step.  As a group, I think that just being there for each other, providing support, can make a huge difference.”

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Thank you, Debbie, for creating such a beautiful piece of art – a piece of you – with us today.❤

Endometriosis in the psoas major muscle

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An article was published on October 30, 2016 in the International Journal of Clinical and Experimental Medicine, which caught my interest.  We know that Endometriosis can grow in a lot of places other than the reproductive organs and pelvis.  This study found Endometriosis growing within a muscle: the psoas major muscle.

The pso-what-is muscle? Well, that’s what I said.

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It’s a pair of muscles that run from the lumbar spine, along the back of the abdomen, and end inside the hip area. It helps flex our hips, aids our walking and running, and can improve posture.  In some places, it’s as thick as a wrist!  As a side-note, weak psoas muscles can cause back pain, hip pain, limited movement in the hips, tight/deep pelvic pain, belly aches, constipation, and a twisted pelvis.  Dr. Axe offers some tips, tricks, and stretches to help strengthen your psoas muscles.

Okay, now back to the study!

A 49-year-old Chinese woman was admitted to the hospital because she had increased CA-125 levels.  If you’ve followed my previous blogs, you’ll remember this could be an indication of the presence of Endometriosis. Seven years prior, she had a hysterectomy and oopherectomy (removal of her right ovary) – she had a uterine myoma and ovarian Endometriosis.

After screening and testing, the doctors found a mass in the left side of her psoas muscle and thought she had a tumor.  She didn’t have any of the usual signs and symptoms of Endometriosis.  She was discharged from the hospital (at her insistance).

Three months later she returned for an MRI.  The mass had grown by 3cm and was also involved with her iliac vessels.  Her CA-125 levels were still increased.  And her physicians needed answers.  An exploratory laparotomy was performed and the mass was visualized in her psoas major muscle.  It was 10x10x8 cm and was inside the muscle tissue.  They continue to fear it was a tumor.

Rather than remove the mass in its entirety, a portion was removed and biopsied: confirmed as Endometriosis.  She received more than 3 months of Lupron Depot and the remaining mass decreased in size and her CA-125 levels stabilized.  The authors surmise the lesion may have transplanted during prior surgeries and hope this case report sheds further light on the illness.

Yet another example of extra-pelvic Endometriosis, as well as post-hysterectomy Endometriosis.  Here’s to hoping this case study continues to push the medical and scientific community into further research and greater funding toward better understanding Endometriosis – and one day finding that much-needed cure.

Resources:

Dr. Axe

International Journal of Clinical and Experimental Medicine – Article (Oct. 2016) Endometriosis in the Psoas Major Muscle: A Case Report

Yoga International

~ 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!

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We made it through another week.  And today’s quote is inspired by my first Pain & Stress Management Class I attended this week.  E. Joseph Cossman once said:

“If you want to test your memory, try to recall what you were worrying about one year ago today.”

Worrying a causes stress…stress can cause anxiety and physically manifest as pain.  If you must worry, worry about the things you can control – not the things you cannot change.

For some tips on how to manage some worries, check out this site.  http://www.health.harvard.edu/blog/two-techniques-for-reducing-stress-201104092235.  I’ve since downloaded The Worry Box app for my tablet.🙂

Happy Friday! And try not to worry this weekend!

~Lisa