Surgery: A caveat, footnote, the small print, an asterisk

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So, with surgery a week away, I met with my gyno/surgeon yesterday for my pre-op (you may have already read the details).  But as I was driving to work today, I realized I forgot to mention one important fact.  One that he mentioned to me the second I sat down in his office, before we got to the nitty-gritty.

He asked for my full attention and stated plainly that this surgery may take away my pain, it may not make a difference, or it may even make my pain worse.  He will do everything that he can to make me feel better, but he cannot promise it will.  And he asked if I understood what he just said.

I did.  And it’s true.  And I value him all the more for his blatant honesty (although I know he probably has to tell everyone that to cover his own butt).

I will repeat it:

  • It may take away my pain;
  • It may not make one lick of difference; and
  • It may make my pain worse.

It’s a fact of life.  There is no guarantee this procedure will help.  And there’s a chance that it may increase my pain.  Abdominal surgeries are notorious for causing adhesions to form, which may increase pain and discomfort.  And there’s no guarantee that the removed Endo lesions won’t return.  There is no cure.

Going into this with my head high and full of positive mojo.

Today’s Pre-Op Visit

 

As you may know, today was my pre-op appointment with my gyno for my September 21st laparoscopy/excision surgery.  I had previously prepared a bunch of questions, to which he answered all that I asked!

First of all, let me share something he wanted me to press upon myself…and all of you.  Positive thinking is powerful.  I need not be nervous about my surgery (or my recovery).  Just tell myself that it will all work out.  That my recovery will go well.  That everything is going to be okay.  That is one of the most important steps I (and all of us) can do for ourselves.  Embrace positive thoughts.  Shoo away the negative.

I also gave him a printout of my pain diagram.  He lit up when I handed it to him and said he wished all patients would give something like this to their doctor.  If you’d like, I can send you a blank template for you to fill in (using Photoshop or some other imaging program)…or I can do it for you (with your direction, of course).

 

We have to be at the hospital at 8:45am on September 21st, and surgery is scheduled to begin at 10:45am.  The day before consists of not eating any meat.  Dinner will be a clear liquid diet (can we say “broth?”) and no food or drink (including water) 9 hours before surgery.  At 6pm, everyone’s favorite: the fleet enema!

Okay…now where’d I put those questions?  And FYI, these are the answers he gave me regarding my specific situation.  His answers may not suit your situation 😉  I just wanted to share with you.

**

  • What to expect after cystoscopy?  Any possibility I’ll stay overnight?  I’ve read that a sensation of burning pee is a temporary side effect; anything else?
    • I may experience burning pee for the first 24 hours.  If I continue to have burny pee after 24 hours, call him as I may have a urinary tract infection.  There’s always a small chance I’ll have to stay overnight, but won’t know ’til I’m awake and processing.
  • Please remember I need a latex-free operating room
    • When the hospital calls me for my pre-op interview this week (or as late as Monday), I’m to remind the nurse.  Also, he assured me that hospital staff will continuously ask me my allergies…and joked they’d but a big red band around my forehead if need be.
  • What’s the worst case scenario?
    • I also didn’t ask this direct question.  He had previously stated to me today that the best case scenario, in his eyes, is that they don’t find anything.  If he finds Endo lesions, he’ll cut them out.  If he finds adhesions, he’ll cut those out and free them. He’ll repair my anatomy as best he can.  And he’ll smooth over a barrier medication over the lesion and adhesion sites in an attempt to reduce their recurrence.
  • Would you take my uterus and ovaries, if needed?  If so, please don’t use a morcellator.
    • I decided not to ask this question.  I know he’ll be conservative and not haul out my uterus without first having an in-depth conversation
  • Will there be pictures and/or video of the procedure? What about of the exterior of surgery: the table or outer-abdomen ports?  I’m so curious!
    • There will be pictures; no video, and its all internal.  Nothing external.
  • Anything you can do to lessen the gas pain that occurs in my right shoulder? Tilt my head? Warm gas?  Expel more gas before closing me up? What are the complications of any of these methods?
    • He does tilt my head already.  Did it for 2014 surgery, too.  It may not always help with the trapped gas and shoulder pain.  He will do everything he can on his end to expel as much of the gas as possible.  He confirms that heating pads are the way to go in handling the pain on my end during recovery.
  • How long do you expect the surgery to last?  Any way someone can update my Mom and Jim as they wait in the lobby once surgery begins?  Last time they expected surgery to last 1.5 hours and it lasted 4; nobody updated them on status and it was stressful and worrisome for them.
    • It should only last 1-2 hours.  I asked if it was longer to please have someone step out and inform my mom and Jim.  He said of course.
  • Any other prescriptions post-op besides Naproxen Sodium?  If so, can we fill them early?
    • He wrote me a prescription for Percocet.  I don’t like pills, so I’m going to refill my Naproxen Sodium before surgery, too.  He said the Naproxen is for mild to medium pain.  The Percocet is for heavy pain. He knows I don’t like to take pills…so hoping this goes well.
  • I know you found Endo on my diaphragm from our first surgery.  Is there any way to verify through this upcoming surgery that you’ve removed it all?  Or is that a thoracoscopy?  Thoughts about my liver Endo?
    • He can only remove what he can see.  A thoracoscopy is incredibly complex and requires a multi-disciplinary team of surgeons and skills. If the Endo turns out to be only one or two lesions on the unseen side of the diaphragm, you risk life-long harm (difficulty breathing, etc.) to remove a small problem.  The same goes for bowel resection: requiring multi-disciplinary teams, a bowel surgeon, and the potential for life-long bowel issues.  He also mentioned there are times where surgeons can’t do anything to remove Endo (when it’s inside the bowels).  Do the pros outweigh the cons?  Of course, if he is in there and suspects it is extensive on my unseen portions of my diaphragm, we’ll have long conversations during my post-op.  And he’ll remove all of the Endo that he finds during my laparoscopy.
  • Can you also examine the outside of my bowels?  I’ve read that if you have Endo in your Pouch of Douglas you’re very likely to have it on your bowels.
    • He will look everywhere.
  • Anything I can do to make your job easier on the Big Day?
    • I wish you could have seen his smile with this question.  Two things : 1) Relax and 2) smile.  I can do those.
  • After surgery, shall we restart taking continuous birth control?
    • I can start taking it right away if I so desired.  As soon as I was up and getting around.  OR I can decide to stay off of birth control pills for a month or two and see how I feel without them.  He says that birth control pills are theorized to help with Endo symptoms, but there aren’t any studies proving it keeps Endo at bay.  I’ve asked him to provide more info on that.  So I have a decision to make : To BCP or not to BCP.
  • Last surgery, I couldn’t lift my right leg to get into the shower for a few days.  Is that normal?
    • After describing that there wasn’t any numbness, tingling, or difficulty walking, he presumes it could have been some muscle extension issues.  But I’m all good now, so I felt kind of foolish asking this one…
  • Any “best” way to sleep while recovering?  Last time propped up on some pillows seemed to be the least painful.
    • Another one I felt rather foolish asking, but I did.  So, he suggests that since the trapped air is wanting to travel upward to escape (thus causing the shoulder pain), perhaps I should try laying down flat…this was the gas can settle around my abdomen rather than rise to my shoulder.  I’m terrified, but will try it.

 **

Signed all the paperwork. Peed in a cup.  Sacrificed four vials of blood. I’m ready! And so is my wonderful surgeon!

Emails???

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Trying a new thing!

If you would be interested in joining, I’ve set up an email-based support group (through Google) so those EndoSisters (or their support systems) who don’t have Facebook or Twitter or Instagram, etc. can communicate with each other! One of our gals asked if there was a way to keep in touch with everyone without Facebook … It’ll be like an email listserv – you send an email or post to the group forum and it goes to everyone involved. They can reply to just you, or to the entire group.  I’ve also invited the gals from our San Diego-based Facebook support group to join.  This listserv will not be restricted to any particular geographical area.

If you’d like to join, please click on this link and request to join.  https://groups.google.com/forum/#!forum/bloominuterusendosupport

I’ve not done this before, so it may be a work in progress 😉 Bwuahaha. And it may just fizzle into nothing…But, I had to try.

~Lisa

Daffodil Society Embezzlement & Shut-Down

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A note upfront:  This Daffodil Society is NOT affiliated with the American Cancer Society’s Daffodil Days OR The American Daffodil Society.  Also, Susan “Sunny” Clark is not and has never been associated with the Daffodil Society nor Sue Kerivan.

The Daffodil Society is based out of Illinois and their mission statement is as follows:  “The Daffodil Society is a nonprofit corporation with the sole purpose of supporting women suffering with endometriosis.”

According to the Daffodil Society, Sue Kerivan, President of the Daffodil Society, has admitted to embezzling funds for her own personal use, including monies that were raised for 3-day Endometriosis Awareness Conference and Walk. Sadly, the walk never took place and the funds disappeared…vendors were not reimbursed for deposits, people who purchased purses as part of the fundraiser never received the purses or a refund, and those who paid actual ticket prices for the event were also not reimbursed for the cancelled conference.  None of the money made it’s way to The Daffodil Society’s coffers.  Sue has since stepped down from the presidency.

The June 2016 event was going to be a “two day mini-conference, designed to educate, advocate and unite Endo Patients, their families, Doctors, Medical Students, Healthcare Professionals and the Community at large in an attempt to gain awareness and foster much better care for the 176 million women and girls around the world, but starting with our own 1 in 10 right in our own neighborhoods and homes.” The itinerary was extensive and was slated to have many guest speakers, an awareness walk, Q&A panels, formal dinners, a comedy show, a dance, and other “surprises.”

Ticket prices were tiered, based on which activities were chosen and prices ranged from $25 to $250.  Vendors fees were $75 to $300.  A table for eight could be reserved for $1,000.  Purses sold for $100 to $250. And, a Facebook post dated September 11, 2016, at 1:23 a.m. stated, “Thousands of dollar were raised, $0 dollars are on the account. . And indeed the DS had never filed for the 501c3 status. As of today, the Daffodil Society has been disbanded.” (emphasis added).  On September 19, 2016, Ms. Kerivan was charged with “deceptive practices” (a Class A Misdemeanor) by the Putnam County Sheriff’s Office.  Kerivan is scheduled to appear for a Bench Trial on August 9, 2018, and is being represented by a public defender.

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Sue responded a few posts later with,

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The Daffodil Society was registered in the State of Illinois as a non-profit business as of July 2015, although it was “not in good standing,” as it had not yet filed it’s annual report and/or paid appropriate fees.  It does, however, have an Employer Identification Number : IL EIN: 47-4617136.

We received permission from Endo Pio Garcia to share the following public Facebook post about her hands-on experience with Sue and her accounting:

“I need to say this. I was VERY close to Sue Kerivan. She helped me a lot through rough times, specially when the doctors refused to treat my chronic pain. She found a doctor to do surgery on me, and get rid of seven tumors and excise my endo. She talked to her landlord so we could move closer to her. I was so grateful for everything she did for me! I joined the Board of Directors of the Daffodil Society with my husband, who was also grateful to finally see me out of misery. I went to her house often, I cleaned and cook for her, we paid for all website and host related costs, and did everything I could to help her in any way. We became very close. I had no previous knowledge of any kind on non-profits, and I trusted every single word she ever said to me. I loved her as if she was family. We were there for her when she most needed, she was my best friend. We saw her becoming overwhelmed when people started to come forward asking for refunds, and since she alone managed the Society we convinced her to delegate. She appointed my husband treasurer, and I became her assistant. My husband insisted in checking the accounts, and Sue couldn’t remember the passwords, felt sick, was busy with something else… This created friction between my husband and her. I felt terrible. When we finally had access to the DS account, we couldn’t believe it! There was no money. $0!!
My husband noticed that as soon as the account got to a couple of hundred, the money was transferred to another account. He demanded access to that account. At that point Sue started complaining that my husband wanted to manipulate her every move, that he was bossy, and even obsessive. I started to realize there was something wrong. When he finally managed to access the other account, we saw that every time money was transferred, it was spent on personal purchases around the area. Gas, groceries, bills, insurance, dollar general… All of it gone. We offered to help her pay it ourselves, thinking at that moment that it was not a horrible amount. We wanted to help her. We knew it was bad. We asked her to stop getting money and focus on finding ways to repay. She accepted. Next thing we know she was talking about the retreat and charging money for DS membership. We couldn’t believe it! My husband told her to desist, and she actually said to him that since she had put so much time and effort on the DS she was entitled to money!!!! Who was this woman??? It couldn’t possibly be the loving lady I grew so attached to! It couldn’t! We had to tell the other members. We did not want to help her anymore. Why didn’t she just try to repay? Why didn’t she take our help? How could she think she could get more money from our sisters to pay for what she had spent?
We told the rest of the board at this point, and they were in as much shock as we had been. Some of them questioned us. But by then we had been locked out of the accounts. We had no proof. It was our word against hers. We asked Sue to give access to the other members, but for x reason she couldn’t. We had the board against us. We kept telling them to ask for access to the accounts. During this time we confronted Sue in a chat group with the board, and she slowly started to make admissions. She blamed one of the former members of the board, she blamed her husband, she claimed that because of her brain injury she couldn’t remember spending thousands of dollars…. We completely lost respect for her. We were heartbroken. People were crying, betrayed, we felt used! All of our time and efforts were towards her personal gain!!! We trusted her. We loved her. We respected her. How could she had done this??? We demanded an apology, and well….

**More details to the story added here**

All we got was an “I’m sorry. But you have to understand it was because of my brain injury”. We weren’t happy with that. We kept insisting that she should apologize, and we got that same excuse over and over again. We were frustrated! My husband went to talk to the Sheriff, and he kindly (at this point I was done with kindness) offered a solution. We would help her get the money she owed ourselves AGAIN, under the condition that she offered a public heart felt, no excuses apology, that she acknowledged that the former board wasn’t a part of the embezzlement, that she stepped down from presidency and that she shut down all DS activity. Otherwise, a formal report would be filed. A few days passed, we had our “apology” on the former DS community page, and absolutely NOTHING else was done. We had offered to help her again! All of us!!! We had hope that she would open her eyes and take our help, maybe even resume friendship afterwards since a lot of the former board had so much love for her, but nope. That same night my husband sent her a text reminding her to step down from the DS, and she takes the text to the Sheriff and tries to file a harassment complaint against him!!! The Sheriff quickly talked her out of it, advising her to just take the help instead and comply with the arrangements. But she didn’t. Well, if she wasn’t sorry for spending our sister’s money, she could easily do it again with no remorse, she seemed to be convinced it was ok due to her brain injury (which was never a problem for planning the whole conference, chasing people to pay deposits, arranging vendors and collecting money from them, planing fundraisers and collecting money from them, getting a very promising program ready…)
We decided to file the report. Then we remembered her saying she had to pay $10 dollars to get a 501(c)3 status, which we thought it was very odd, since she had previously stated it was a couple of hundred, so my husband decided to give the accountant a call. She told him that she had only met with Sue once a year prior to register the DS under the state of Illinois, but as of July 15, 2016, she still hadn’t paid the $10 to renew registration. She also told us she never applied for a 501(c)3 status, OR filed the taxes for the year it was registered.

It struck me: she had a very good reason not to delegate any responsibilities outside from advertising fundraisers… She used us! She made sure most of us hadn’t any non-profit experience so we wouldn’t ask any questions!

We never meant to “slander” her (plus is not slander if we have all the proof and her admission). We are just so full of pain and anger and betrayal. So many sisters are out of money, and she just took it and lied about it. And she used us to help her. How would YOU feel? That after offering to help she just convinced everybody that you were out to destroy her reputation? Should’ve I just let her go on doing it?” ~Original Facebook Post here

Sharing this information in case you had given funds and are upset and wish to request a refund – the Daffodil Society is doing what they can to rectify the situation.

For information on how to request a refund for June’s event, please visit their Facebook page https://www.facebook.com/OfficialDSOutreach/.  The site also has over a dozen screenshots of Ms. Kerivan’s submitted accounting, which shows purchases linked to her personal business, local grocery stores, a gym, restaurants, party supply and craft stores, boutiques and clothing stores, utility and waste management bills, automobile insurance, postal services, gas stations, Microsoft and iTunes, and jewelers.  They’ve submitted this proof to authorities.

My personal feelings? It’s disgusting.  I don’t have all of the facts or Ms. Kerivan’s side of the story, but it’s absolutely disgusting and I needed to share this with you.  I’m even more upset because I shared this event on our list of 2016 Endo Events…and this happened.  I apologize if any of you were affected by my sharing this event and encourage you to reach out to the society to submit a request for refund.

Please, do your research before you donate your money to any organization.  The Daffodil Society does not appear to be a tax-exempt 501c3 non-profit organization.  If they had raised funds, what would they have done with them to aid in the research and awareness of Endometriosis?  Although a part of me wants to see Ms. Kerivan as a woman with a vision, a goal – and she was overwhelmed and unable to control a fast-growing event which spun out of control and crashed.  Her Facebook posts say she is working on a plan to refund everyone, but … it still doesn’t excuse the fact that the record keeping was substandard, the account balances don’t reflect the funds raised, and it has escalated into a horrible pissing match of he-said-she-said.  I’m hoping this all resolves for all involved and the truth comes out.

And just FYI (in case you didn’t already know), Bloomin’ Uterus is not a non-profit.  I’m just a girl with a domain name, a fictitious business license, and a vision.  Any and all funds I raise are donated directly to the Endometriosis Foundation of America by Gofundme.com and by Teespring.com.  I never see a penny.  I never want to.

Updated April 20, 2018

Resources:

Fievent

Illinois Secretary of State

LinkedIn

Putnam County Court Docket

Putnam County Record

SlideShare

The Daffodil Society

The Daffodil Society Endometriosis Awareness Event 2016 Facebook page

The Daffodil Society Public Apology & Reimbursement Page Facebook page

The Daffodil Society: Victim’s Outreach Facebook page

Food Grade Hydrogen Peroxide

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I’d recently heard about food grade hydrogen peroxide.  Wait, what?  People are ingesting the bubbly stuff I put on scrapes and scratches?  Some say it’s great for you, that it cures allll kinds of things by oxygenating the blood.  Others swear up and down that it acts as a detox for your body (I know you’re either rolling your eyes at that word, or you’re squirming in your seat with excitement).  Regardless of how I feel about detoxes, cleanses, cure-alls, etc., I am still curious about this trend.

What’s the differences between the hydrogen peroxide I keep in my medicine cabinet and “food grade hydrogen peroxide?”  Concentration! Here’s the different types of H2O2 available:

3% Pharmaceutical H2O2, what most of us have in our first aid kits and medicine cabinets.  Some EndoSisters dilute 3% H2O2 in a hot bath and soak for relaxation;

6% Beautician Grade H2O2, used in hair coloring treatments;

30% Reagent Grade H2O2, used in scientific experiments;

30 – 32% Electronic Grade H2O2, used to clean electrical components;

35% Technical Grade H2O2, used in scientific experiments;

35% Food Grade H2O2, used for food production and processing.  It has also been found as an ingredient in improvised chemical weapons (due to it’s high oxidation).  This is what many people have been ingesting or breathing for health benefits, although it must be severely diluted prior to use (some dilute it in water and drink it, others dilute it and use it in a humidifier or nebulizer, and yet others dilute it, gargle, and spit).  Consuming improperly diluted H2O2 can be fatal.  Other ways people use FGH2O2: a foot soak, in the bath, as a douche, as an enema, or as mouthwash; and,

90% H2O2, used in rocket fuel (yes, I just Nerded Out).

There are claims that food grade hydrogen peroxide acts as a natural disinfectant, that it oxidizes and eliminates toxins from the body, and (as we all pretty much have learned growing up) cleans wounds and fights infection.  As for claims of a cure, people have said that food grade H2O2 has cured their sinus infections, emphysema, Alzheimers, yeast infections, Diabetes, melanoma, blood poisoning, warts, depression, sciatica pain, multiple sclerosis, arthritis, Lupus, herpes, gum infections, skin infections, toothaches, cancer, AIDS, and so much more.  You can find countless testimonials online about the life-changing benefits of users.

On the flip side, people have complained that after drinking or inhaling food grade hydrogen peroxide (even diluted), they’ve suffered from coughing fits, nausea, vomiting, sore throats, cotton mouth, swollen legs, headaches, chest pain, tinnitus, loss of balance, blood disorders, constipation, a burning sensation near the anus, stomach cramps, and flu-like symptoms (body aches, fatigue).  One webpage said that these adverse symptoms are merely, “the H2O2 seeking out the virus & streptococcus to destroy.”  Others tell these complainants to simply reduce the amount of drops they take each day and the symptoms will dissipate. One concerned user said he got heart pains after consuming H2O2 with tap water…the response from another H2O2 user: that the heart pains are likely caused by the tap water because “God knows what’s in that stuff” rather than the H2O2.  Another tap water drinker suffered from extreme bloating after H2O2 consumption, had been to the ER, and was suicidal after the bloating hadn’t receded. She wrote, “I am a victim to not researching this properly and being a complete idiot. Please help me know if in time this will heal.”  She doesn’t mention she’ll stop using H2O2…and nobody responded to her question.

In 2006, the FDA published a press release outlining the dangers of ingesting hydrogen peroxide.  They urged consumers not to ingest the 35% Food Grade H2O2, for risk of causing “serious harm or death.”  They urged those who were already consuming to stop immediately.  The FDA has never approved of such actions, and went after companies selling FGH2O2 claiming their product healed illnesses.

Curious to start your own treatment of food grade hydrogen peroxide?

First, bring it up with your doctor and address pros, cons, concerns, possible side effects, and possible interactions with medications or supplements.  I’m pretty sure most MDs will dissuade you, but you need to have this conversation.

Secondly, good luck finding the recommended dosage.  All I’ve found online are conflicting reports about which percentage of H2O2 to purchase, how many drops versus how much water to dilute, and how best to increase your dosage:

  • Some say 3 drops of 35% H2O2 to 12oz of water.
  • Some say 3 drops of 12% H2O2 to 11oz of water.
  • Others says 4 drops of 8% H2O2 with 8oz of water.
  • Some say use 3% H2O2 and don’t dilute it.
  • Others say us 3% H2O2 and dilute it further.
  • Some say you can ingest the regular 3% H2O2 we all have in our bathrooms.
  • Others say no to the 3% H2O2 because it’s full of other ingredients that may be harmful to us.
  • Some say to take it on an empty stomach.
  • Others say to always eat before you do.

It’s all over the place.  And don’t get me started on how many drops you should be taking how many times per day.  Some sites warn against laying down immediately after consuming H2O2 as it can cause the gases in your stomach to rise, causing discomfort or trouble breathing.

A 2007 study states that ingestion of hydrogen peroxide can kill you in one of three ways : 1) caustic injury (it burns ya), 2) oxygen gas formation (ya send a bubble to your brain), and 3) lipid peroxidation (the oxidation causes free radicals to strip lipids of electrons and can cause a chain reaction of cell damage/death).  A 39-year-old man accidentally drank 8 ounces of 35% food grade hydrogen peroxide (he thought it was water; it was in an unlabeled bottle in a friend’s fridge).  He went to the ER after vomiting blood and complained of upper abdominal pain.  Upon examination, he had some caustic injury to his stomach, as well as some gas issues.  He spent three days in the hospital and was released.  The study notes, “the storage and use of 35% hydrogen peroxide for natural health benefits results in an emerging source for more serious ingestions. Thirty-five per cent hydrogen peroxide can be lethal when ingested, and needs to be treated with caution and stored appropriately. Public awareness and regulation of the use of this substance is required.”  As a side note, some people believe the cellular and tissue damage caused by these free radicals may aid in the development of adhesions…which nobody wants.

A study published in the Journal of Community Health this year reviewed 634 poisoning incidents that occurred between 2012-2013 in California.  Of those, 30 reports were related to hydrogen peroxide: seven people used it in their ears, 22 people used it rectally, and one person used it vaginally. This study mentions that a 29-year-old woman went to the ER because she had administered as 12% food grade hydrogen peroxide enema in the hopes to “clean herself out.”  She had 10 separate episodes of rectal bleeding before going to the emergency room.

Other side effects of hydrogen peroxide consumption/poisoning may be a narrowing of airways, trouble breathing, burning of gastrointestinal tract, too much oxygen in blood (which may cause an embolism), and tissue damage. However, I think these were mostly from cases which did not dilute the solution enough…

With an unregulated, unstudied, and unproven “treatment,” I urge you to please do your research and be careful.  I know you’re going to treat however you feel is best for you, but do it with an educated mind.  Heed the warnings and go into this fully aware of all of the consequences.

Will I try it?  You can probably guess my answer by the tone of this blog entry. 😉  But will I judge you for wanting to try it? Not at all…just be careful.

Resources:

Canadian Journal of Gastroenterology – (Article, Oct. 2007) Accidental Ingestion 35% Hydrogen Peroxide

Cancer Tutor – (Blog, June 2016) Hydrogen Peroxide Cancer Treatment

Earth Clinic – (Blog, Sept. 2016) Food Grade Peroxide Cures

Educate Yourself – (Blog, July 2013; updated May 2015) The Many Benefits of Hydrogen Peroxide

Endometriosis: Current Management and Future Trends – (Excerpt, 2010) Oxidative Stress and the Pathogenesis of Endometriosis

Heal Dove – (Blog, April 2016) Food Grade Hydrogen Peroxide and Its Uses

Illinois Poison Center – (Blog, Feb. 2011) Frightening Facts about Food-Grade Hydrogen Peroxide

Journal of Community Health – (Abstract; Feb. 2016) Human Poisoning Through Atypical Routes of Exposure – if you would like to read the entire article, please let me know

Livestrong – (Article, Jan. 2016) What are the Dangers of Food Grade Hydrogen Peroxide?

Los Alamos National Library – (Slides, Jan. 2016) Unconventional CW

OBGyn.net – (Blog, July 2011) Stress Reduction for Relief of Fibroids & Endometriosis

Texas Poison Center Network

US Food & Drug Administration – (Press release, July 2006) FDA Warns Consumers Against Drinking High-Strength Hydrogen Peroxide for Medicinal Use

US National Library of Medicine – (Abstract, May 1999) Lipid Peroxidation and Tissue Damage

~ 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!

Good morning! It’s Friday!!!

Today’s quote was written by Elizabeth Gilbert in her book Eat, Pray, Love.  I haven’t read it, so I don’t know the context of the quote, but it really spoke to me today.  It may be when you read this you think of someone in your life that has been there to support you: a friend, family member, or significant other.  Or, it may be that when you read this, you interpret this as yourself speaking to yourself…which is very, very important.  Lift yourself, and others, up.

“I’m here. I love you. I don’t care if you need to stay up crying all night long, I will stay with you. If you need the medication again, go ahead and take it—I will love you through that, as well. If you don’t need the medication, I will love you, too. There’s nothing you can ever do to lose my love. I will protect you until you die, and after your death I will still protect you. I am stronger than Depression and I am braver than Loneliness and nothing will ever exhaust me.”

 

FDA Bans Ingredients in Antibacterial Soaps

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If you haven’t already heard, this week the FDA banned 19 ingredients used in anti-bacterial soaps.  You’ll see these soaps on sale at the market only to disappear from the shelves within one year…unless the soap manufacturers can find a way around the 19 ingredients that were banned.

But why?  Either the ingredients couldn’t be shown to do squat against bacteria, or they posed a potential threat to our bodies.  Interesting to note, the ban is only for the ingredients found in antibacterial soaps, not other household agents that may contain these ingredients (like creams or hand sanitizers).

Read the FDA’s announcement here: http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm378393.htm

The 19 ingredients that the FDA banned from market in anti-bacterial soaps are:

  • Cloflucarban;
  • Fluorosalan;
  • Hexachlorophene;
  • Hexylresorcinol;
  • Iodophors;
  • Iodine complex;
  • Iodine complex of phosphate ester of alkylaryloxy polyethylene glycol;
  • Nonylphenoxypoly, or ethyleneoxy, ethanoliodine;
  • Poloxamer, an iodine complex of Povidone-iodine 5 percent to 10 percent;
  • Undecoylium chloride iodine complex;
  • Methylbenzethonium chloride;
  • Phenol greater than 1.5 percent;
  • Phenol less than 1.5 percent;
  • Secondary amyltricresols;
  • Sodium oxychlorosene;
  • Tribromsalan;
  • Triclocarban;
  • Triclosan, and
  • Triple dye.

The initial report I saw on the news mentioned Triclosan and some other ingredients may actually screw with hormones and thyroid levels…but that more research was needed. A study in 2010 found that Triclosan exposure in mice potentially did alter their estrogen-dependent function and suppressed thyroid hormones.  A 2016 study looked at Triclosan exposure and children.  It found that Triclosan exposure, “has been associated with increased responsiveness to airway allergens, with it also capable of endocrine disruption.”

Triclosan can be found in many antibacterial/antimicrobial soaps, as well as in toothpaste, body washes, mouthwash, cosmetics, lotions, deodorant, first aid care (including sunburn products and splints/collars), kitchen utensils, antimicrobial clothes, office supplies, etc.  For an extensive list of items (with brand name examples), please check out Beyond Pesticides.

Don’t get me wrong : it does have antimicrobial properties, and that’s been proven study after study.  It’s just that having an estrogen-driven illness makes me shy away a bit from something that may make it worse…

I’m curious to see how, if at all, things change for the medical community.  From what I’ve read, many of these ingredients are also used in pre- and post-operative scrubs, washes, soaps, and ointments.  I know the ban is focused on consumer soaps: the stuff you and I, the regular Joe Schmoe’s of the world buy…but what about professionals?  Doctors, surgeons, hospitals, etc.?  Aren’t businesses a form of “consumer?”  And if the ban does extend to them, will there be an increase in infections in their realm?

So curious.  What are your thoughts on the whole soap ban?

Resources:

Beyond Pesticides

Current Opinion in Pediatrics – (Abstract; April 2016) Consumer Products as Sources of Chemical Exposures to Children: Case Study of Triclosan

Disinfection, Sterilization, and Preservation

Food Safety News

Pubchem

Toxicological Sciences – (Article; June 2010) Triclosan Exposure Modulates Estrogen-Dependent Responses in the Female Wistar Rat

U.S. Food & Drug Administration

~ 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

Reader’s Choice : Pelvic Floor Dysfunction

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A bird’s eye view of the pelvic floor muscles

Have you heard of pelvic floor dysfunction?  I hadn’t; not before meeting women who suffer from it.  And I’d never heard of a pelvic floor before that, either.  We’re going to focus today on pelvic floor dysfunction in women (although men can get it).  But what is it?

The pelvic floor is made up of a lot of little muscles, nerves, and tissues all working together for your body to function.  Imagine it as a tightly-woven basket at the underside of your pelvis, sweeping from front to back, and side to side.  Not only does it support the organs of the pelvis, but it also wraps around the urethra, rectum, and vagina.  When these muscles, nerves, and tissues stop working properly (they are too tense or too lax), it’s called pelvic floor dysfunction.  It can cause pain and difficulty with urination, defecation, intercourse, and lower back pain.

Doctors aren’t sure what causes pelvic floor dysfunction, but know that it does exist…and can occur for a lot of different reasons.   Data shows that almost 50% of people that suffer with constipation actually suffer from pelvic floor dysfunction.

The symptoms of pelvic floor dysfunction vary:

  • Feeling like you have to poo a lot over a short period of time
  • You feel unsatisfied about a poo and feel like you’ need to go more
  • Straining to poo
  • Constipation
  • A frequent need to pee.  Sometimes once you start peeing, you stop and start again mid-stream
  • It hurts to pee
  • You feel a need to bear down to pee
  • Lower back pain
  • Ongoing pain in your pelvis, genitals, or rectum
  • Painful sex
  • Muscle spasms along the pelvic floor

Many women with Endometriosis and Interstitial Cystitis suffer from pelvic floor dysfunction.  Some of these women treat with antidepressants, which may worsen the symptoms of pelvic floor dysfunction.

If you suspect you have pelvic floor dysfunction, your doctor will get a complete medical history from you, including your symptoms.  He/she may conduct an internal physical examination to determine how well you can control your pelvic muscles.  Another test may involve the use of an adhesive pad with electrodes between your anus and vaginal opening which measures muscle contractions (this does not sound pleasant).  A perineometer may be used, which is a small tampon-like sensor that is inserted into the vaginal canal that takes readings of muscle strength and weakness.  An x-ray test may also be conducted:  you’re given an enema and your muscle contractions are visible to the physician as you push out your poo (I’d die of embarrassment).  Another test may check the weakness or strength of your ability to control urinating.

You’ve been told you have pelvic floor dysfunction.  Now what?  Several treatment options are available to you:

  • Physical therapy : internal or external manipulation of the muscles, trigger point release, massage, nerve release, and skin rolling.
  • Biofeedback and electric stimulation : working with a physical therapist using electrodes to measure and improve muscle coordination and relaxation.
  • Ultrasound therapy : using sound waves to help reduce spasms and reduce inflammation.
  • Cold laser treatments : may be used to reduce inflammation and pain.
  • Medication : low-dose muscle relaxants may help ease pelvic floor dysfunction and restore muscle control
  • Relaxation techniques : warm baths, yoga, breathing exercises, and stretching exercises may also help realign and restore whacky muscles
  • A change in diet : eat foods that are well-known to aid in the pooping-arena, such as high-fiber fruits and vegetables.
  • Surgery : in extreme cases, such as rectal prolapse, surgery may be required to repair dysfunctional pelvic floor muscles.

Several of the gals in our local support group had the pleasure of going to a pelvic pain & pelvic floor therapy workshop hosted by Comprehensive Physical Therapy in San Diego.  It was wonderfully enlightening, and a few of the therapists also suffer from Endometriosis.

Prevention Magazine ran a story in 2014 (careful, lots of pop-ups) about pelvic floor dysfunction and followed the story of “Lisa.”  The article also points out several tips and tricks you could do to help aid in the healing of PFD.

If you suffer from a pelvic floor disorder and want to meet a community of people who also know what you’re going through, you may want to check out Voices for PFD.

Thank you, Toni, for suggesting I read up and write about PFD.  I learned a lot today.

Resources:

Cleveland Clinic

Interstitial Cystitis

Mayo Clinic

Mayo Clinic – (Article; Feb. 2012) Recognition and Management of Nonrelaxing Pelvic Floor Dysfunction

Monterey Bay Urology Associates

Prevention MagazinePrevention Magazine – (Article; April 2014) Why It Hurts Down There. What You Need to Know About Pelvic Floor Dysfunction

The University of Chicago Medicine

Vital Health Institute

Voices for PFD

~ 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

New study : Endometriosis found in cynomolgus monkeys

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So, we recently wrote about Endometriosis being found in two mandrillus sphinx.  Last year we learned about Endo being found in a German Shephard.  Well, today we read about it being found in monkeys: cynomolgus monkeys.  This is not the first time Endometriosis has been found in this breed of monkey, but we’re going to focus on just this new study today.

There are roughly 1,500 – 2,000 cynomolgus monkeys living in the breeding colony of the of the Tsukuba Primate Research Center in Japan, and it boasts of 200 newborns each year.  Eight of these monkeys received ultrasounds and examinations which led the facility to believe they may of Endometriosis.  Each of these monkeys was raised at the facility.  They were between 5-21 years old.  Half of them had given birth; the other half had never been pregnant.   They had always been fed daily “commercially-prepared monkey chow” and 100g of apple.  Two of them had received embryo transfer procedures and some had cysts drained (which showed up in routine ultrasound scans).  The study does not discuss any further type of symptom suppression treatment.

Unfortunately, all eight of these monkeys perished.  Three of those were found dead between 2005 – 2011; the remaining five were euthanized due to their declining state of health.  All eight monkeys received autopsies and confirmed diagnoses of Endometriosis.  A diagnosis “which was considered the cause of death or deterioration of the general condition of the animals.”  Four of the monkeys had Endometriomas (chocolate cysts) on their ovaries, uterus, or other pelvic organs.  They also had adhesions (scar tissue) and Endometriosis lesions throughout their pelvic cavity.  Some were found to have Endometriosis lesions in their Pouch of Douglas, colon, and colonic muscle tissue.   The two monkeys that had Endo lesions in their colon were also found to have Endometriosis lesions within their lymph nodes.  Three of the monkeys were also found to suffer from Adenomyosis.

The data on each of these eight monkeys showed they had the following symptoms while they were menstruating:

  • decreased food consumption (all 8)
  • no bowel movements (6 monkeys)
  • loose bowel movements (7 monkeys)
  • loose bowel movements with blood (1 monkey)
  • bloating (4 monkeys)
  • vomiting (1 monkey)
  • enlarged or irregular uterus (5 monkeys)

The authors hope that further study of Endometriosis in Cynomolgus monkeys will help us better understand the disease in humans.  I just feel so awful for the animals that suffer with this illness.  We at least have a voice and can seek medical care (well, most of us).  And truly knowing that this disease has such a widespread effect on many, many species on this planet just makes it all the uglier.

Resources:

Human Reproduction – (Article; Sept. 2016) Characteristics of Histologically Confirmed Endometriosis in Cynomolgus Monkeys

~ 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