Reader’s Choice: Melatonin & Endometriosis

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One of my readers, Erin, emailed me asking if I could look into taking Melatonin for Endometriosis pain and symptoms.  She had heard that it may help reduce the symptoms, pain, and maybe even the lesions themselves.

So, on goes my Research Cap and it begins!

Melatonin is a natural hormone produced by the body as the light fades.  Many people take Melatonin to help them fall asleep and stay asleep.  It’s been coming out in studies over the past decade that Melatonin may play a role in helping reduce Endometriosis lesions and pain.

In 2008, a study was published about 25 rats that were surgically implanted with Endometriosis.  Interesting enough, it found that the rats that were treated with Melatonin were found to have fewer and smaller Endometriosis lesions than rats that received nothing.

In 2010, another rat study took place, this time comparing rats who were given Melatonin to rats who were given Letrozole.  Thirty rats were induced with Endometriosis, given Estrogen for 2 weeks, then surgically confirmed to have Endometriosis lesions present.  Some received Letrozole for 2 weeks.  Others received Melatonin for 2 weeks.  They were all surgically opened up and their Endometriosis lesions were recorded and measured.  The rats received another 2 weeks of Estrogen, then were finally studied.  It found that the rats who received Melatonin had fewer and smaller lesions than the rats that were given Letrozole.

In 2012, Melatonin was referenced in a study about different types of pharmacological treatments of Endometriosis.  It stated that past studied have shown that daily Melatonin usage had reduced the volume and size of lesions and reduced oxidative stress markers.  As far a dosing goes, rats were given 10mg a day for 18-28 days.  It stresses that the doses had not yet been tested on humans.

A Brazilian study published in 2013 found stated that Melatonin was thought to help Endometriosis because it’s an analgesic, antioxidant, and anti-inflammatory.  It studied 40 women over an 8-week period.  Some of them were given a placebo, and the others were given 10mg of Melatonin each day for 8 weeks.  For those who took the Melatonin, 40% of them had reduced daily pain and 38% of them had reduced painful periods.  They also had an improved quality of sleep.

In March 2015, a study was published discusses various doses of Melatonin given to rats that had been implanted with Endometriosis.   Unfortunately, the abstract did not divulge the doses given to each rat and the results.  It did; however, state that Melatonin treatment did result in the regression of lesions in the rats.

I know I’m excited to read about the possible benefits of Melatonin when it comes to Endometriosis.  BUT, there’s always a “but”…

The US Department of Health and Human Services states short-term Melatonin use appears safe; however, little is known about the safety of long-term Melatonin usage since studies of long-term effects have not been conducted.  Also, some people have complained of side effects while taking Melatonin:  dizziness, drowsiness, headache, irritability, nausea, and stomach cramps.  Many users have also complained of grogginess the next day.

Then there’s the question of dosing.  What is the appropriate dose of Melatonin?  A 2001 study identified the proper dose of Melatonin to help people sleep is 0.3mg per day, taken just before bed.  Sleep.org stated a dose between 0.2mg and 5mg taken an hour before bed would be sufficient.  For people who have sleep-wake cycle problems, they’ve taken 2-12mg of Melatonin for 4 weeks.  The study of Endometriosis in women was a 10mg supplement for 8 weeks.

There are also indications that Melatonin may worsen depression, cause high blood pressure (or negate blood pressure medications), worsen bleeding in people with bleeding disorders, may interfere with immunosuppressive therapy (for organ donor patients, etc.), and may increase blood sugar levels of diabetics.

Don’t forget about the “don’t take this medication with this medication” category.  Since Melatonin may be a sedative for many people, avoid taking Melatonin if you take other medications that may cause drowsiness.  Some examples would include Klonopin, Ativan, Donnatal, and Ambien.

There is some concern out that that taking Melatonin may cause hormonal issues.  Since Melatonin is technically a hormone created by the body, supplementing it may cause imbalances or

As always, please talk to your physician before starting any type of new regimen, whether it be pharmaceutical, supplements, diet, or lifestyle changes.   I know I’ll be talking to my physician.  And always understand that little is regulated in the supplements market.  Do you own research and act wisely.

Do you take Melatonin for your Endometriosis? Have you noticed a difference? Please let us know by leaving a comment below!

Resources:

Archives of Gynecology and Obstetrics (March 2015, Abstract) The Effects of Different Doses of Melatonin Treatment on Endometrial Implants in an Oopherectomized Rat Endometriosis Model

Dr. Tori Hudson – (May 2014, Blog) The Effect of Melatonin in the Treatment of Endometriosis

Empowered Sustenance – (June 2014, Blog) Melatonin Isn’t a Sleeping Pill: 3 Reasons to Avoid Melatonin

Fertility & Sterility (April 2008, Article) Regression of Endometrial Explants in a Rat Model of Endometriosis Treated with Melatonin

Fertility & Sterility (April 2010, Article) The Effects of Letrozole and Melatonin on Surgically Induced Endometriosis in a Rat Model: A Preliminary Study

Fertility & Sterility (Sept. 2012, Article) Pharmacologic Therapies in Endometriosis: A Systematic Review

Huffington Post (March 2016, Article) Read This if You Take Melatonin to Sleep at Night

National Center for Complementary and Integrative HealthMelatonin: In Depth

PAIN – (June 2013, Abstract) Efficacy of Melatonin in the Treatment of Endometriosis: A Phase II, Randomized, Double-Blind, Placebo-Controlled Trial

WebMDMelatonin

~ 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

Have you Seen the Endometriosis Commercials on TV?

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Screenshot of SpeakEndo.com; 1/30/18

I don’t have TV, but I’ve had a lot of friends and loved ones excitedly tell me that they saw a commercial about Endometriosis recently! I think that’s awesome! A wonderful way to spread awareness to so many people!

Like one friend said, it took me 20 years for a diagnosis – maybe it wouldn’t have taken so long if I had seen a commercial similar to this one. If it can help just one woman begin to search for answers, it’s awesome.

So, I checked out their webpage, SpeakEndo.com and watched the recent TV ad. If you haven’t seen it, you can watch it here. I thought it was wonderful for encouraging women to be open and honest about their pain symptoms. Periods aren’t embarrassing – just tell your doctor so they can make sure everything is okay. They won’t know something is wrong if you don’t speak up! Embrace that personal power and self-advocacy!!

SpeakEndo also creates a community for women to share stories, bond, and learn together. It also provides resources on how to prepare for an appointment with a physician to discuss Endometriosis. And it gets better: for every person who signs up on SpeakEndo, a donation is made to the Endometriosis Foundation of America; although it doesn’t state what that donation amount is.

Then I did some digging. And please understand: this is an expression of my opinion. I developed it based on gut feelings and what little internet information I could find. Purely my opinion. Please feel free to do your own research, digging, and thinking:

AbbVie’s name hovered over the commercial toward the end after they released the webpage information. “Who’s Abbvie”, you ask? A pharmaceutical company. Not just any pharmaceutical company, but the one who manufactures and markets Lupron Depot, a GnRH agonist used aggressively by physicians to treat the symptoms of Endometriosis. I was on Lupron Depot for six months (you can read my experience here) and many other women have suffered from long-term effects of the drug (you can read about their lives after Lupron here). It’s not a drug I will ever take again. I feel like the harsher physical and mental side effects of the drug were not verbally disclosed to me, and it was literally the hardest regimen I’ve ever endured. It’s so much more than “chemical menopause.” If you’re interested in reading up on some of the other side effects that weren’t verbally discussed with me (literally, I was told it was “just like entering menopause”), check out the FDA’s product packet insert here (Pages 10-12 discuss adverse reactions).

AbbVie is also currently working on a new GnRH antagonist called Elagolix to treat Endometriosis and fibroids. It would be in pill form instead of an injection like Lupron. The most common-reported side effects during the clinical trials were hot flash/hot flush, nausea, and headaches. I haven’t been able to find the lesser-reported side effects. But having been on a GnRH agonist for six months and enduring a wide gambit of effects including hot flash, nausea, and headaches; I will never personally take another. I could only hope that Elagolix’s lesser-reported side effects will be equally disclosed and discussed prior to prescription and administration of the drug to patients.

Am I going to sign up for SpeakEndo.com? Nope. After scrolling to the bottom, seeing AbbVie is the owner of the site, reading their privacy policy and their terms of service, I’ve no desire to embed myself with a pharmaceutical company.

A large part of me can’t help but think that the push for the FDA priority review, the timing of the Endometriosis commercial and the launch of the SpeakEndo webpage are financially motivated and targeting a niche market:

  • 2013-present: AbbVie conducts clinical studies of Elagolix to treat Endometriosis pain and symptoms;
  • May 2017: SpeakEndo.com domain name secured by AbbVie
  • Sept. 2017: AbbVie seeks FDA review and approval of Elagolix;
  • Oct. 2017: FDA approves a priority review of Elagolix;
  • Jan. 2018: SpeakEndo commercials hit TV screens;
  • Spring/Summer 2018: anticipated FDA approval date for Elagolix;
  • SpeakEndo is owned by AbbVie, Inc.;
  • AbbVie manufactures and distributes Lupron Depot;
  • AbbVie has conducted several studies regarding Elagolix and is pushing for FDA approval.

AbbVie received FDA approval for a priority review of Elagolix, shortening the usual 10-48 month approval process to an expedited 6-month approval process…meaning Elagolix could be approved as early as mid-2018. An article published on January 29, 2018, stated that AbbVie shares were “up over 100 percent over the past year” and a September 25, 2017, article stated that Elagolix was “expected to have an annual cost of therapy over $7,000” in the United States alone.

In the past, the FDA has approved prescription medications on a priority review basis, only later to be withdrawn from the consumer market. Priority review is granted for drugs that “would be significant improvements in the safety or effectiveness of the treatment, diagnosis, or prevention of serious conditions” and drastically shortens the time of approval to push the drug to the consumer market. Following is a list of examples of a few drugs that were approved on a priority basis, only to be withdrawn:

  1. After a 9-month review, Accutane was approved by the FDA on May 7, 1982, to treat acne. Ads were placed in magazines and on TV. During the first six months of its release, physicians had written 200,000 Accutane prescriptions. As time and technology progressed, Hoffman-La Roche (the manufacturer) secured the domain names FaceFacts.com (focused on acne with teenagers) and derm-infonet.com (acne with adults), which have been described as webpages that were non-branded information sites that provided “medical information on the subject of acne and acne treatments.” In 2000, Hoffman-La Roche had raised over $7.5 million from Accutane sales alone. In 2001, the FDA Consumer Magazine said Accutane was “the biggest breakthrough in acne drug treatment over the last 20 years.” Then, in 2009 the manufacturer withdrew it due to an “increased risk of birth defects, miscarriages, and premature births when used by pregnant women; inflammatory bowel disease; suicidal tendencies.” There were years of regulation reviews and hearings, as well as over 7,000 lawsuits filed by consumers.
  2. Abbott Laboratories created Cylert to treat ADHD/ADD targeted mostly at children and teenagers. It was approved under a priority review in 1975. Cylert was advertised in medical journals, such as the American Journal of Psychiatry, touting it’s “once a day convenience” instead of a need for multiple doses.  By December 1998, the FDA reported there had been 12 confirmed cases of liver transplants and/or death caused by the drug. In 2005, a consumer group raised concerns about the safety of Cylert which was followed by Abbott discontinuing its production (supposedly due to a lack of demand and not influenced by the consumer complaints). The FDA officially withdrew its approval as Cylert was proven to cause liver toxicity and the risks involved far outweighed the benefits of the drug.
  3. A few Irritable Bowel Syndrome drugs have been approved by the priority review process.  In February of 2000, Lotronex was approved for the treatment of Irritable Bowel Syndrome in women. Soon after it was available to the public, the FDA began receiving adverse reaction reports, including constipation and ischemic colitis. In some instances, patients required surgery due to bowel complications…or worse…died; there were reports of 45 surgeries and four deaths. Less than ten months after it’s priority review approval, Glaxo Wellcome withdrew Lotronex from the market. However, since it was considered the only drug available to help some people with their IBS symptoms, it was re-approved in 2002 and was placed back on the market with severe restrictions. In July 2002, Zelnorm was manufactured by Novartis for IBS treatment.  It was aggressively promoted with TV and magazine ads. With the launch of Novartis’ “Tummies” TV commercials, they received 390,000 new patient prescriptions, claiming their ads “empowered thousands of women to talk about IBS” to their doctors. It increased their prescription sales by 90%. However, due to an increased risk of heart attack, stroke, and chest pain, it was pulled from the market in 2007. Zelnorm sales profited Novartis an estimated $560 million.
  4. After seeking priority review, Pfizer received FDA approval in 1997 of Rezulin. It was marketed as an antidiabetic and an anti-inflammatory medication. Due to reports of liver failure and 63 confirmed deaths, the drug was removed from the market in 2000. It had earned Pfizer over $2 billion in sales.
  5. In 1999, the FDA approved Merck’s drug, Vioxx, after a six-month priority review period as a drug to aid with pain, menstrual cramps, and osteoarthritis that was supposedly safer than Advil or Aleve. Magazine and TV ads featured athletes Dorothy Hamill and Bruce Jenner. They both made appearances on the Larry King Show to talk about Vioxx, clarifying that they were both paid by Merck. It’s estimated that Vioxx was prescribed to more than 20 million people. However, it was withdrawn from the worldwide market in 2004 after it was found to increase the risk of heart attacks. It’s estimated that nearly 28,000 people suffered heart attacks and/or death due to Vioxx. Merck profited $11 billion during Vioxx’s four-year sale period.

I’ve no faith in the FDA’s “priority review” process. The FDA does not conduct their own studies; rather, it depends on the studies by the manufacturers and third parties attesting to the safety, risks, and efficacy of the drugs they’re pushing.

Through my research, I’ve also learned that many pharmaceutical companies have hosted patient groups, organizations, and websites which offered an avenue of support to those who suffer from various conditions. Advertising watchdogs refer to this tactic as “Condition and Behavioral Targeted Advertising,” using unbranded sites to reach a target audience with a specific condition. It’s been described as “specialized health portals and networks specifically created to target consumers based on particular conditions or concerns” through “the use of online video and websites to raise the awareness of a particular disease or condition…designed as educational sites, where individuals can share their experiences with various treatments.” The phrase that really makes my Spider Senses tingle: “specifically created to target consumers based on particular conditions or concerns.”

Eisai, Inc., a pharmaceutical company that manufactures an anti-epileptic drug, owns www.livingwithepilepsy.com. The domain was secured in 2005, but the webpage is no longer active. In 2009, Eisai, Inc. started the unbranded site www.livingwithLGS.com, another epilepsy site which includes “treatment options, transitioning a child to adult care, videos, and tools and resources for caregivers, including a customizable Doctor Discussion Guide.” The site is still active today.

Likewise, in 2001 www.parkinsonshealth.com was launched. It was owned and run by Teva Neuroscience, a pharmaceutical company that manufactures drugs used in the treatment of (you guessed it…) Parkinson’s Disease. Teva Neuroscience even produced a brochure, claiming Parkinsonshealth.com and Parkinson’s Support Solutions were “a comprehensive support program designed to provide the financial resources, support, and education patients and caregivers need.” And the only place that Teva Neuroscience was referenced in the entire brochure? The small print at the bottom of the very last page…If the consumer wasn’t looking for it, the brochure would have read as a completely unbiased publication without any fiduciary interest. The webpage is no longer up and running.

 

And this sounds much like what AbbVie appears to be doing with SpeakEndo.

I’d really, truly like to think that AbbVie is only reaching out to those in need, spreading awareness of an often misunderstood and neglected disease. But my brain keeps circling back to the fear of their motivation. I truly hope theirs intentions in setting up SpeakEndo.com were not to prey on those who suffer and seek relief from the pain of Endometriosis, nor to gain from the seemingly-perfect timing of the projected approval and launch date of their drug Elagolix.

Regardless, I am still so very pleased that someone (even if they are Big Pharma) are out there raising awareness of Endometriosis and bringing sufferers together. I can’t say this enough: I hope their intentions are pure and their motivation is appropriate.

Resources:

AbbVie – products list

AbbVie – Elagolix product page

AbbVieAbbVie Receives U.S. FDA Priority Review for Investigational Oral Treatment Elagolix for the Management of Endometriosis with Associated Pain

AbbVie – SpeakEndo.com Privacy Policy (How We Use Your Information section)

AbbVie – SpeakEndo.com Terms of Service

Acne.orgHow Advertised is Accutane?

AdAgeBig Pharma Finally Taking Big Steps to Reach Patients with Digital Media

AdAgeInteractive: Media & Marketing: Drug Companies Boost Online Media Buying: Roche will Spend $1 Million-Plus

Andantestudy – Teva Neuroscience’s brochure: Caring for a loved one with Parkinson’s Disease

AttorneyPagesBayer’s Trasylol: What Really Happened?

Azilect.com

BenzingaAbbVie Shares Double In A Year; Leerink Moves to Sidelines

BonkersInstitute – 1996 Cylert advertisement in the American Journal of Psychiatry

Center for Digital DemocracyDrug Marketing Moves to Digital: How Pharmaceutical Companies Pitch Consumers Online

Clinical TrialsStudy to Evaluate the Long-Term Safety and Efficacy of Elagolix in Subjects with Moderate to Severe Endometriosis-Associated Pain

Community CatalystZelnorm: A Case Study in Why Drug Advertising is a Bad Idea

DePirro/GarroneZelnorm

Drugs.comElagolix Approval Status

Drug Enforcement AdministrationLevamisol (Ergamisol)

DrugwatchCelebrities Team with Big Pharma to Promote Drugs, Disease Awareness

Eisai Eisai Announces Launch of Antiepileptic Drug Fycompa in U.S.

Fierce PharmaMerck – Vioxx

Formulary JournalPemoline Removed from US Market

Harvard Law SchoolBabies, Blemishes and FDA: A History of Accutane Regulation in the United States

Lawyers and SettlementsNovartis Withdrawing Zelnorm: But at What Cost?

Los Angeles TimesThe Rise and Fall of the Killer Drug Rezulin

MedTVIs Lotronex Back on the Market?

New York TimesUS Lets Drug Tied to Deaths Back on the Market

Organic ConsumersBayer: A History of Profit from Suffering

ProCon.org35 FDA-Approved Prescription Drugs Later Pulled from the Market

Regulatory Affairs Professionals SocietyFDA Approves Pfizer’s Mylotarg 7 Years After It Was Pulled from the Market

RochePatient Organisations

Seeking AlphaAbbVie Should Obtain FDA Approval for Elagolix

Strataco

Tradmarkia.comFaceFacts.com Trademark Information

US Food & Drug Administration – Cylert pamphlet

US Food & Drug AdministrationDrug Approval Database – Accutane

US Food & Drug AdministrationDrug Approval Database – Cylert

US Food & Drug AdministrationDrug Approval Database – Lotronex

US Food & Drug AdministrationDrug Approval Database – Mylotarg

US Food & Drug AdministrationDrug Approval Database – Permax

US Food & Drug AdministrationDrug Approval Database – Rezulin

US Food & Drug AdministrationDrug Approval Database – Trasylol

US Food & Drug AdministrationDrug Approval Database – Vioxx

US Food & Drug AdministrationDrug Approval Database – Zelnorm

US Food & Drug AdministrationGastrointestinal Drugs Advisory Committee and Drug Safety and Risk Management Subcommittee Background Package

US Food & Drug AdministrationPriority Review

US Food & Drug AdministrationSequence of Events with Vioxx, Since Opening of IND

US Library of MedicineElagolix: A Promising Oral GnRH Antagonist for Endometriosis-Associated Pain

Whois.com – Domain Name Search – Facefacts.com

Whois.com – Domain Name Search – IWalkBecause.org

Whois.com – Domain Name Search – Livingwithepilepsy.com

Whois.com – Domain Name Search – LivingwithLGS.com

Whois.com – Domain Name Search – Parkinsonshealth.com

Whois.com – Domain Name search – SpeakEndo.com

~ 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

Update from earlier this week

Dear Readers,

Well, I’ve popped at least one Naproxen Sodium every day this week.  Today, the pain was so bad I tossed back a Tylenol 3 with Codeine and chased it with a Zofran.  It even hurts to take a deep breath and I feel like my entire torso has swollen up and is tight.

10:30am…popped the pills

4:10pm…the pills are wearing off.  The pain is coming back and the nausea from the Zofran is here full-force…So, I called my doctor for a consult and ultrasound.  I remembered that he was going to be out of the office for a while this & next month, so figured I’d be seen in late September or October…

BUT, his incredible staff made an awesome suggestion: the other healthcare provider who works in his office can get me in TOMORROW at 9am for a consult and ultrasound!!! I adore Mara and trust her nearly as much as I trust Dr. K! This will be our first ultrasound together, and her first hands-on experience with my septated canal and dual cervix! It’ll be a party down below!

So, here we go.

I’ll keep you all updated.

Which also means my “Feel Good Fridays” post for tomorrow will be published later than usual.

Standby…

Love, Me.

PS – I HATE this freakin’ disease!

When do you decide … it’s time?

So, I have a very important question for you, my Readers.  I value your input and feedback. I always have.  But now I need your advice…

When do you know when it’s time to go back to your doctor and let them know that your pain is returning, that you’re afraid your Endometriosis is back with a vengeance, that it may be time to begin pursuing yet another surgery?

Yet, here I sit afraid that it’s still all in my head.  That I’m blowing my pain out of proportion.  That I’ve lived without it as intense for months and am now not used to it and am labeling it as large, debilitating pain.

And, as I type that, I know how silly it sounds…because I honestly feel that I’m not blowing it out of proportion.  That I upgraded from Naproxen Sodium to Tylenol 3 with Codeine because the pain is getting that much worse.  That I sleep with a heating pad on, just so I can try to sleep…and I’m not even on my period (yet).  I’m due any day…

These thoughts keep me awake at night.  And greet me in the morning.

I have so many things that I WANT to do.  I want to plan and enjoy a one-week honeymoon with my husband.  I want to go to Burning Man next year (which requires all of my vacation time).  I want to visit family in Arizona…but here I sit three-quarters of the way through 2017 and I’ve only got two vacation days to my name. I’ve used up the rest and all of my sick time on calling in with cramps, or taking a fun 3-day weekend here or there to be with my husband and friends.  Two vacation days…for the rest of the year.

Definitely not enough for a surgery in 2017.  And I don’t want surgery in 2018 because I absolutely want to return to the Desert for two weeks with loved ones.

So I throw my hands up in the air…and analyzed my pain journals for this year.  Want to look at them with me?  Each month recently, my pain has gotten progressively worse, particularly on the right side…

2017…my pain journal.  The red shapes indicate the location of the pain and/or cramping.  BM stands for Bowel Movement.  GI is gastrointestinal. The #/10 stands for the severity of pain, on a scale of 1-10.

January:

jan

February:

feb

March:

march

April:

april

May:

may

June:

june

July:

julys

August (thus far…):

august copy

 

If you were me, would you call your doctor and at least request a consult and an ultrasound?  And go from there?  Or would you just suck it up and continue to pop pills and lose sleep and *hope* it goes away?

I know it won’t go away…it’s not what the disease does…

But I hope it does.

And I want to cry just typing this.

 

New Case Study: Endo … in the buttcrack

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A study published online in June 2017’s edition of the Journal of Gynecology, Obstetrics and Human Reproduction discusses a case of Endometriosis in a very peculiar and very extra-pelvic location: the buttcrack! (You can read the entire article here).

A 24-year-old woman in France went to her doctor because over the past 2 years, a spot in her buttcrack would bleed during her period. She also suffered with painful periods, painful sex, diarrhea, and constipation. Upon examination, her doctors found a 3mm blue nodule in her buttcrack.  They immediately suspected cutaneous Endometriosis because of her pain, symptoms, and the fact that it bled during her period.  An MRI seemed to confirm their suspicions, but the patient refused excision of the lesion and no biopsy was conducted.  Instead, she opted for hormonal treatment.  Her choice of treatment offered her some relief.

They authors stress that any blue-ish nodule with similar symptoms be suspected of Endometriosis.  And they also stress the uncertainty with theories on how it ended up…there.  A very interesting thing…and just one more weird place on the body that it can manifest.

 

Resources:

Furet E, et al. Spontaneous intergluteal cleft endometriosis. J Gynecol Obstet Hum Reprod (2017), https://doi.org/10.1016/j.jogoh.2017.06.001

~ 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 in Rhesus Monkeys

1024px-Rhesus_Macaques

In the past, I’ve written about Endometriosis being found in two mandrillus sphinx,  a German Shephard and cynomolgus monkeys.  I know when I think of Endometriosis, I often simply think of it as a women’s disease…but have to remind myself that men can get it, as well as animals.  A study hit my inbox this morning about monkeys, rhesus macaques, developing Endometriosis.

The 2017 study published in Primate Biology discusses rhesus macaques (aka rhesus monkeys) that were housed at the Biomedical Primate Research Centre in the Netherlands and the New England Primate Research Center in the United States.  Not only did the study discuss the spontaneous development of Endometriosis in these creatures, but it focused on the genetic similarities between humans and these monkeys in the hopes of continuing the studies of finding genetic links to the illness.

Eight monkeys from the Biomedical Primate Research Centre had Endometriosis.  Their ages ranged from 12 to 21 years of age; none had prior surgeries.  Seventeen monkeys from the New England Primate Research Center had Endometriosis, and they ranged from 12 to 20 years old.  Four of those 17 had previously delivered offspring via cesarean sections.

In both facilities, the monkeys were housed in large social groups in the hopes of “mimicking the natural ecology” of uncaptive life. They were fed monkey chow, fruits, vegetables and grains.   And, as a matter of procedure, anytime an animal passed away (either naturally or by euthanasia), an autopsy was performed.  Tissues were flash frozen and set aside.  The study reviews those detailed medical and histology records of each monkey, as well as any preserved tissue samples.  Almost all of the monkeys were of Indian origin, with the exception of a few mixed breeds and one with Burmese descent.

Many of the monkeys who were posthumously diagnosed with Endometriosis had previously exhibited the usual signs and symptoms: bloating, pain, painful periods, or “cystic lesions” detected via ultrasound.  Every time I read of an animal with the disease, it breaks my heart; we, at least, can express our pain.  They cannot.

The DNA and genetic analysis of the study goes waaaaaay over my head…so I’m not even going to try to summarize it for you.   It did clearly mention; however, that it may result in an altered immune response, which may affect Endometriosis.  But you can read it for yourself via the link in the Resources section below.

As usual, more studies are needed!  And that’s the hope: to spawn one that may lead to a better understanding of the cause of Endometriosis.

Resources:

Primate Biology (Article, June 2017) – Spontaneous Endometriosis in Rhesus Macaques: Evidence for a Genetic Association with Specific Mamu-A1 Alleles

Primate Info Net

~ 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 & the Appendix

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Here I go again, once more intrigued by Endometriosis growing in odd places inside the body.  Today I’m going to focus on the appendix.  I’ve read that many women have their appendix removed because physicians may confuse Endometriosis pain for the symptoms of appendicitis.  But on Tuesday an article hit my email about Endometriosis growing on the appendix…and I became obsessed.

Please remember: I don’t write this to scare you, or freak you out, or say that all of your right-sided abdominal pain is from Appendix Endo.  Take a deep breath – I like to document these things in case anyone would like to discuss it further with their healthcare providers so they may be aware during surgery.  Appendiceal Endometriosis is considered extremely rare and it is suspected that only 1-3% of all cases of Endometriosis involve the appendix.  But…knowledge is power.

What & Where is the Appendix

The appendix is part of the gastrointestinal tract attached to a section of the large intestine, where it meets the small intestine.  It is located in the lower right section of your abdomen, and is a skinny 4″ long tube.  If you have pain in that location, especially when it’s pushed on, physicians may suspect appendicitis.

Appendix: Necessary Organ or Leftover, Useless Tissue?

Depending on who you ask, the appendix does (or doesn’t) serve a purpose.  Hence why so many people no longer have theirs.  If it’s inflamed, it’s typically removed.

Many believe the appendix to be a “vestigal organ” or an organ that used to have a purpose, but has since evolved into uselessness.   Recently, though, some researchers have theorized that the appendix is not a useless flappy tube, rather it houses good gut bacteria – aiding in recovery from GI issues and illnesses and strengthening the immune system.

Is it useless?  Does it safely store good gut bacteria?  Who really knows…

Endometriosis versus Appendicitis

Symptoms of appendicitis can include fever, abdominal pain, abdominal swelling, loss of appetite, vomiting, an inability to fart (yes, I said “fart”), constipation, or diarrhea.  Many of these symptoms can mirror complaints and symptoms of Endometriosis.  Hence, an often misdiagnosis of appendicitis.

Appendicitis may develop because of inflammation, an infection, or even a blockage to the appendix.  When infected or blocked-up, the bacteria inside the appendix goes nuts, the appendix can fill with puss and swell up.  If left untreated, it can burst or rupture…which simply means it tears.  It shouldn’t pop like a balloon.  If it does rupture,the nastiness-fluid from within can spread all over the pelvic cavity, which may infect other organs or even cause sepsis, which can be fatal.

Is every bit of lower right-abdominal pain associated with appendicitis? No. It could just be something you ate, bad gas, period cramps, anyyyything.  Or it could be appendicitis.  AND some women with Endometriosis of the appendix don’t have any symptoms – it’s just discovered by accident.

But that being said: sometimes Endometriosis can affect the appendix…One study stated that out of 1,500 appendectomy biopsies,  0.80% had Endometriosis.  I’ve read that some surgeons believe that the appendix should be removed during Endometriosis excision surgery as a preventative measure, even if it appears healthy.

If you’re worried, please do your research and talk to your healthcare provider.  As usual, there doesn’t appear to be any type of pre-operative diagnostic tests for the presence of Endo on the appendix. Ya gotta go in and see it for yourself…aka surgery.

Now, for the SCIENCE!

Documented Cases of Endometriosis on the Appendix

And before you bury yourself in reading numerous cases of women with Endometriosis of the appendix, I wanted to share an image with you of what Endometriosis on the appendix can look like.  Dr. Andrew S. Cook of Vital Health took this photograph during an excision surgery and has granted me permission to share it with you today:

Endometriosis-of-the-Appendix
Photo by Dr. Andrew S. Cook, Vital Health Endometriosis Center; used with permission

Endometriosis on the appendix is nothing new – as my research will show.

The earliest published study I found online featuring Endometriosis on the appendix was published in 1929 in the Canadian Association Medical Journal.  It covered three cases of women with Endometriosis:  one with an Endometrioma, the second with Endometriosis on her appendix, and the third with Endometriosis in a surgical scar.  I find it incredibly interesting that they dissect the theories of Endometriosis for each: contributing the first to Sampson’s theory, the second they simply note as “an unusual situation”, and the third they cite the German’s theory of tissue change (metaplasia).  Just a fun little piece of historical literature on our disease. (I sense a new obsession festering…)

In 1960, medical records were reviewed from 30 appendectomies which occurred between 1919-1955 at St. Luke’s Hospital in Chicago, Illinois.  Each was pathologically confirmed as Endometriosis of the appendix.  Of those 30 women, 11 presented with symptoms which mimicked appendicitis.  Four of those 11 presented with pain at the onset of their periods.  It was noted that none of the 30 women had recurrent symptoms after their appendectomies, although many of them were found to have pelvic Endometriosis.  Sixteen of the 30 women also went through partial or full hysterectomies at the time of their appendectomies.

In 1975, researchers combed through medical records of the Kapiolani Hospital in Hawaii and reviewed 12 documented cases of appendiceal Endometriosis, ranging from 1968-1973.  During those years, the Hospital performed 1,496 appendectomies – of those, 12 tested positive for Endometriosis of the appendix.  Additionally, the researchers interviewed the 12 women for further details and information.  Many were found to have Endometriomas during surgery, too.  Seventy-five percent of those women complained of abdominal pain prior to their surgeries.  Which means, some didn’t – they had complaints of lower back pain and period pain.  Unfortunately, the study doesn’t go into detail of how they fared after their surgeries.

A study published in 1981 documents a 23-year-old Nigerian woman who was 35-weeks pregnant and had complaints of vaginal bleeding and right-sided pain.  Appendicitis was suspected, so a surgery was performed and her appendix was inflamed and torn.  Her appendix was removed and the child was safely delivered by c-section.  A biopsy revealed Endometriosis along the appendix wall where the rupture occurred, but nowhere else.

Another study in 1981 reviewed the medical records of 50 patients diagnosed with Endometriosis between 1968-1978 at Mount Carmel Mercy Hospital in Detroit, Michigan. Of those 50, 16 had confirmed Endometriosis of their appendix, the youngest of whom was only 14 years old…and the oldest?  Sixty-two!  Their complaints ranged from abdominal pain, to heavy periods, to GI complaints.  Many had pain located in their lower-right abdominal quadrant.  Pre-operative diagnoses included acute appendicitis, uterine fibroids, and ovarian cysts.  During surgery, two were found to have ruptured appendixes with abnormalities, six had inflamed appendixes, and eight had normal-appearing appendixes.  Seven of the 16 women also had total hysterectomies performed at the time of surgery.  Biopsies on all confirmed Endometriosis.  After surgery, two had recurrences of Endometriosis and it was later discovered in their sigmoid colons.

In 1983, a study reviewed the literature and medical records from 1950-1981 from the Department of Pathology Frederiksberg Hospital in Denmark.  During that time period 10,000 appendices were removed and biopsied.  Of those, 22 tested positive for Endometriosis of the appendix.  Of all of the medical records reviewed during that time period, 800 patients were found to have Endometriosis.

In 2007, a study was published about a 35-year-old Japanese woman who complained of three days straight of abdominal pain (especially on the right side) and nausea.  She had a history of mildly-painful periods, and had finished her last one three weeks prior.  She was admitted into the hospital and imaging studies revealed fluid within her pelvic cavity, as well as inflammation of her pelvic lining.  The physicians suspected either a perforated/ruptured appendix or a ruptured ovarian tumor or dermoid cyst.  Surgery was performed and the appendix was found to stuck to her abdominal wall and was also “markedly enlarged” – so it was removed.  Biopsies confirmed the appendix wall had been infiltrated with Endometriosis and likely caused her appendix to rupture.  She was discharged two weeks later and was doing well.

In 2008, a study was published about two women in Turkey with appendiceal endometriosis.  A 45-year-old woman went to the ER because of severe pain and nausea during the second day of her period.  Lab work and imaging studies revealed nothing out of the ordinary, but she was tender to the touch.  Due to the progressive severity of her pain while at the hospital, a laparotomy was performed and her inflamed appendix was removed.  The interior wall of her appendix was confirmed by biopsy to to have Endometriosis present.  Secondly, a 41-year-old woman went to the ER because of nausea, painful urination, and severe pain on the right side of her abdomen.  Again, testing appeared mostly normal and due to the progression of her pain, surgery was performed.  Her appendix was “covered with a brown-dark red colored material.”  A ruptured endometrioma on her right ovary was suspected as having released the fluids throughout.  Biopsy results yielded Endometriosis.

In Africa, a 2008 study was about a 25-year-old woman checked into the hospital with complaints of right-sided abdominal pain for the past day.  She was also nauseous and vomiting.  Lab results were normal and she was sent home and told to consult with a gynecologist.  Three months later, she again went to the hospital with identical symptoms.  The lab results were normal, but she was admitted for two days, then released.  Four months later, she returned.  This time she had the abdominal pain with diarrhea, but no nausea or vomiting.  Tests showed she had a small cyst, and she was admitted for five days.  Upon release, she was urged to consult with a gynecologist and a psychiatrist (I wish you could sense my anger as I typed that last word…).  Nine months later, she was readmitted to the hospital for the same issues.  This time, they performed an appendectomy and her appendix appeared normal…that is, until biopsy (yes, you guessed it) – it confirmed the presence of Endometriosis on her appendix.

In 2010, a study was published about a 29-year-old Japanese woman who had right lower abdominal pain for two days.  She had similar symptoms about a year prior.  She had a history of painful periods, accompanied by fever, and had been treating with her gynecologist with traditional Chinese medicines.  Imaging studies showed a slight calcification and thickening of her appendix wall and she was diagnosed with acute appendicitis, and sent off for am immediate appendectomy.  It was removed, appeared mildly inflamed, and was sent off for biopsy.  You guessed it:  Endometriosis.  After surgery, she had no residual pain or feverish periods.

A 2011 study was of a 36-year-old Greek woman who complained of abdominal pain, swelling, constipation, and an inability to flatulate (is that a better word than farting? I think not.  I still giggle.) for the past three days.  She had a history of using contraceptive pills and painful periods.  Imaging studies revealed a large blockage in her intestine which they presumed to be a tumor.  She underwent an laparotomy, and they discovered numerous adhesions, an inflamed appendix, and her bowel was incredibly swollen.  They removed the adhesions and her appendix and resected a large portion of her bowel.  Pathology reports confirmed Endometriosis on her colon and her appendix.  She treated with Triptorelin (a GnRH agonist) for her Endometriosis and six months later she had to undergo a second surgery to restore her resected bowel.  No Endometriosis lesions were found and she was doing well.

A South African study published in 2016 study discussed a 33-year-old woman who had been suffering with infertility, even after three IVF attempts.  She complained of pain to the right side of her abdomen for the last four hours, and was nauseous.  She was hot to the touch, and tender at the right side of her stomach.  Her pregnancy test and urine tests were normal, but given her infertility a CT was performed, which revealed a mildly-enlarged appendix, and let her physicians to suspect the onset of appendicitis.  Laparoscopy was performed to remove her appendix, which was was visually inflamed, and while inside they noticed a “reddish brown area” on her uterus, which was excised and biopsied.  Endometriosis was confirmed on her uterus and her appendix biopsy came back negative for appendicitis.  However, her meso-appendix (a flap of connective tissue between the appendix and the ileum) did come back as having Endometriosis on it.

A study published in a Canadian journal in 2016 was about a 34-year-old woman who went to the ER due to right-sided abdominal pain.  For the past several months, the pain had returned during her period, which she also started the day before she was admitted.  All of her tests came back normal (except for a cyst spotted on her ovary), and she was discharged home.  Five days later, she returned due to worsening pain.  Due to the suspicions of appendicitis, surgery was ordered.  Her appendix was not inflamed, but did have what was suspected to be a tumor – so the appendix was removed and sent off for biopsy.  The results came back that Endometriosis was on involved with the appendix and mesoappendix.  After surgery, she did not have any recurrence of pain.

Another 2016 study was of a 65-year-old woman in Turkey who had abdominal pain and nausea for the last 24 hours.  She had pain on the right side of her abdomen and lab tests showed elevated inflammatory markers and enlarged appendix.  An appendectomy was performed and a “brownish mass” was found on her appendix.  A biopsy confirmed it was Endometriosis.  She had no recurrent symptoms 30 months after her surgery.

In June 2017, the IJRCOG published a study from India of a 26-year-old woman with a history of Endometriosis.  A year prior, she was diagnosed with an endometriotic cyst, and given six months of Lupron Depot, followed by a birth control pill, and was pain-free.  Her pain returned chronically in her lower abdomen and she returned to her physician.  She was one injected with Lupron Depot, but a week later her pain was so intense she went to the emergency room.  Testing results raised suspicions of appendicitis.  She underwent a laparoscopy, and she was found to have a dense adhesions, a frozen pelvis, and an inflamed appendix.  Her appendix and adhesions were removed and upon biopsy her appendix was confirmed with Endometriosis. The authors conclude that appendix endometriosis is “very rare” and preoperative diagnosis is next to impossible.

In March of 2018, Obstetrics & Gynecology discussed the case of a woman with a known ectopic pregnancy.  She also had a history of pain in her right abdomen.  While they were inside her pelvis dealing with the ectopic pregnancy, they also performed an appendectomy based on their suspicions of appendicitis.  Well, the biopsy results came back as positive for appendiceal endometriosis.

There were many, many more studies I did not highlight here.  So many!!!

Again, if you’re worried, talk to you doctor.  Supposedly it’s very incredibly rare to have Endometriosis of the appendix, but it does happen.

(Updated April 17, 2018)

Resources:

Acta Pathologica Microbiologica Et Immunologica Scandinavica (Article, July 1983) – Endometriosis of the Veriform Appendix

African Health Sciences (Article, 2008) – Endometriosis of the Appendix

American Journal of Obstetrics & Gynecology (Article, 1975) Endometriosis of the Appendix

American Journal of Obstetrics & Gynecology (Article, 1960) Endometriosis of the Veriform Appendix

American Journal of Surgery (Article, Oct. 1981) Endometriosis of the Appendix Presenting as Acute Appendicitis

Archives of Gynecology and Obstetrics (Article, 2008) – Appendiceal Endometriosis: Two Case Reports

British Journal of Obstetrics and Gynaecology (Article, April 1981) – Perforation of the Appendix During Pregnancy: A Rare Complication of Endometriosis

Canadian Medical Association Journal (Article, Sept. 1929) – Three Cases of Endometriosis

Case Reports in Gastroenterology (Article, June 2007) – Endometriosis of the Appendix Resulting in Perforated Appendicitis

Everyday HealthWhat is the Appendix?

HealthlineWhat Does the Appendix Do?  Things to Know

Hiroshima Journal of Medical Sciences (Article, June 2010) A Case of Endometriosis of the Appendix

International Journal of Reproduction, Contraception, Obstetrics and Gynecology – (Article, June 2017) – Concurrent Ruptured Endometrioma with Appendiceal Endometriosis: A Case Report

Journal of Emergency Medicine Case Reports (Article, 2016) – Two Cases of Acute Abdominal Intestinal Endometriosis

Journal of Medical Case Reports (July 2011) Rectal Endometriosis Causing Colonic Obstruction and Concurrent Endometriosis of the Appendix: A Case Report

Journal of Obstetrics and Gynecology Canada (Article, Oct. 2016) Isolated Appendiceal Endometriosis

Mental Floss (Article, undated) Immunology Study Suggests the Appendix has a Use After All

Obstetrics & Gynecology (Abstract, March, 2018) Appendiceal Endometriosis and Ectopic Pregnancy Occurring Simultaneously

 

Science Alert (Article, Jan. 2017) Your Appendix Might Serve an Important Biological Function After All

Science Daily (Article, Jan. 2017) Appendix May Have Important Function, New Research Suggests

South African Journal of Obstetrics and Gynecology (Article, Sept. 2016) – Endometriosis of the Meso-Appendix Mimicking Appendicitis: A Case Report

~ 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 & Perineum

Protoreaster_Nodosus
It’s the only photo I could think of that wasn’t … vulgar

Well, this was a first for me.

I’ve read numerous studies of Endometriosis developing in scar tissue after c-sections or other abdominal surgeries, but this one caught me by such surprise that I wanted to share it with you!  It’s important to any EndoSisters who may have delivered children naturally and have complaints of pain…”down there.”  Read on!

A 38-year-old woman had birthed a baby vaginally 12 years ago, undergoing an episiotomy.  Three years ago she developed pain on the right side of her vulva.  The pain increased during her periods.  Two years ago, that painful spot began to swell. And swell.  And swell until it was an inch long and an inch wide and turned into a hard, discolored bump.  None of her doctors were able to offer her answers or relief.  So, further investigation was needed.

Where was this swelling?  You know sometimes women who give natural birth have to have their (insert grimace here) vaginal openings…made wider in an effort to avoid tearing?  It’s a procedure called an episiotomy – a small incision through the muscular tissue of the vaginal opening, down the perineum toward the anus.  In 12-year-old giggle-girl terms: they slice open the gooch; the taint.  Okay, let me compose myself again…

Anyway, this poor woman had developed an inch-long/wide bump in her episiotomy scar which was painful RIGHT THERE!  Could you imagine wearing jeans? Sitting down? Even just walking? Ugh…

An MRI was taken and it was discovered that the lumpy-bumpy stretched along the perineum and was also involved with the puborectal muscles ( little sling that encircles the rectum – if you’ve seen the Squatty Potty ads on TV or Youtube, it’s the little rubberband muscle that relaxes/released your colon-goods) AND her anal sphincter.  Surgery was ordered and they excised the mass, as well as 1cm of healthy tissue surrounding the lump.  They also reconstructed her sphincter (thank goodness).  Biopsies of the tissue confirmed the suspected diagnosis of scar tissue Endometriosis.  And six months after her surgery, she was still symptom-free.  There was no prior history of Endometriosis mentioned in this article.

I was flabbergasted.  I know Endo can develop wherever and I really shouldn’t be surprised – but all the hullabaloo I’ve read about is women developing scar endometriosis after c-sections.  Just know that it can develop…um…elsewhere…even if you haven’t had a c-section

This just goes to affirm my beliefs that if you have a hard, painful bump *anywhere*, please talk to your doctor and pursue answers.

And happy Tuesday! ❤

Resources:

Babycenter All About Episiotomy

Panacea Journal of Medical Sciences – (April 2017; Article) A Rare Case: Episiotomy Scar Endometriosis with Anal Sphincter Involvement

~ 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

Possible relief from painful sex or penetration? Vuva Magnetic Dilators.

20161110_194505

Vuva-whata-what?

I found these little pink … things … back in October 2016 when I was experience A LOT of pain with sexual intercourse.  I mean, a lot.  I was desperate.  After reading the reviews on how many women who use Vuva Magnetic Dilators had relief from painful sex, I was hooked.  But…I also couldn’t afford to purchase the kit.  And, let’s face it – I had my doubts about magnets in dilators (dildos?) helping me with anything.

So, I wrote the company.  Tara, the creator and founder, immediately wrote me back.  She, too, suffers from Endometriosis.  She also suffers from Vulvodynia and said her magnetic dilators helped her tremendously with her vaginal and pelvic pain, especially with sex!  AND – she offered to send me two dilators for free because she truly believed they would help and wanted to help women in pain.

She didn’t ask me to write this review.  I just wanted to.  And…again…I still had my doubts.

But before I get into my experience, I wanted to explain a little bit about my understanding of what the Vuva Dilators are and how they are supposed to work.

A dilator looks an awful lot like a sex toy you can buy anywhere.  BUT…a dilator is used for medicinal purposes and comes as a set of steadily increasing sizes/girths to help stretch the vaginal opening, or muscles inside the canal (no, I’m not good with scienc-y words).  This may sound painful, but you can get dilators that are *very* small, and work your way up to something that is more comfortable (or close to the size of your partner).  And it’s an incredibly slow and gradual process, stretching at your own pace, taking weeks to months. Vuva dilators are internally lined with Neodymium magnets, which supposedly help relax muscles and increase blood flow to the area.  You insert one of these bad boys for 20-30 minutes each day and that’s it.  There’s no stretching, no rubbing, no moving or wiggling around.  Just stick it in, watch a TV show while laying on the couch, and pull it on out. *voila*

For more information, check out their webpage, which has all kinds of info on why magnets are supposed to work and testimonials.  https://www.vuvatech.com/

Tara shared a study conducted by Physician Care Clinical Research comparing Vuva dilators to regular dilators.  From February 2015-December 2015, a clinical study of Vuva’s effectiveness was conducted on 12 women in Florida.  A year later, the final report was prepared.  The 17-page report outlines the study, which was a randomized, double blind, crossover study for vulva/vaginal pain.  The women had complained of ongoing vaginal/vulva pain for at least three months.  Four areas were covered during the study:  pain with tampon usage, pain of certain areas around the vagina via a cotton swab test, the way a woman felt emotionally about vaginal penetration, and sexual intercourse.

The study’s down and dirty after using Vuva magnetic dilators as instructed (well, my understanding):

  • 90% of the women reported a decrease in pain with tampon usage.  This figure is actually for women who used the Vuva Magnetic Dilators AAAANNNDD women who used the regular dilator (non-magnetic; placebo).  So, using a dilator may help women who experience tampon pain. BUT, for those who used the Vuva magnetic dilators, they experienced twice the amount of pain relief than with regular dilators.  Those who used the Vuva magnetic dilators experienced 30% less pain for the “tampon test.”
  • The cotton swab test was gently prodding a woman around her vulva with a cotton swab and recording the pain levels.  80% of the women reported a decrease in pain levels after using the Vuva magnetic dilators.  On average, 28% less pain!
  • Many women who experience vulva, vaginal, or pain with sex begin to fear the act of penetration itself.  All of the participants stated they had a higher sense of control and self-image.
  • Each woman also kept track of their sexual intercourse, as well as any pain associated with sex.  Unfortunately, half of the women didn’t have sex curing the length of the study.  But for the half that did, 80% of them had sex more often than before!

BUT what about me? Ready for TMI?

Before I started the Vuva magnetic dilators, sex was uber painful.  Don’t get me wrong – it can still be painful…but, we’d have sex, and it’d hurt 6-8 out of 10.  And I’d cramp for several hours (sometimes even into the next day) afterward.  Granted, I had my laparoscopic surgery on September 21, 2017 and was still healing by late October, BUT sex was uber painful and crampy long before that surgery.

Here’s a little tracker on my sex pain, Vuva usage, and my thoughts:

Oct. 16: had sex (me on top) and pain during sex was a 6 out of 10.  Afterward, my cramps were a 3-6 out of 10 and lasted for an hour and a half.

Oct. 29: had sex (me on top) and pain during sex was a 6 out of 10. No cramping.

Nov. 7: I began using IntiMD dilators (just a regular dilator).  Even with the largest dilator, I did not experience changes or anything.  Followed instructions and felt this program was not right for me.

Nov. 10: Used my Vuva Magnetic Dilator for the first time!  No pain or discomfort.  Felt warm and full/fluffy (…down “there”) after 20 minutes of use…in a good way, like having soaked in a hot bath.  Magnet magic? Maybe.  Began to use regularly (every day or every other day).

Nov. 11: Had sex (six hours after using dilator, that weird sideways spoony-sex).  Sex pain was a 2 out of 10, cramping was a 1 out of 10 and only lasted an hour.

Nov. 17: Had sex (sideways spoony-sex).  Sex pain was a 1 out of 10, cramping was a 3 out of 10 and lasted a few hours.

Dec. 1: Had sex (sideways spoony-sex and me on my stomach).  Sex pain was ZERO!!!!  Cramping was a 2 out of 10, and lasted about 30 minutes.

Dec. 3: Had sex (sideways spoony-sex and me on my stomach).  Sex pain was a 1 out of 10, cramping was a 2 out of 10 and lasted about an hour.

Dec. 4: Had sex (me on top, my laying on my stomach, and doggy style).  Sex pain was a 3 out of 10, cramping was a 2 out of 10, lasting about 30 minutes.

Dec. 14: Had sex (sideways spoony-sex).  Sex pain and afterward cramping were a ZERO! Oh my god.

Dec. 22: Had sex (sideways spoony-sex).  Sex pain and afterward cramping were a ZERO! Again!!

Dec. 24: Had sex (me on top).  Sex pain and afterward cramping were a ZERO!!!

Then I took a break from using my Vuva dilators due to the holidays…bad idea:

Jan. 4: Had sex (doggy style).  Sex pain was a 7 out of 10, cramping was a 3 out of 10, lasting about 30 minutes.  Vowed to renew Vuva usage!!  We’ve also since realized that doggy is just too deep for my nifty anatomy (I have a septated canal and two cervix) so we stick to less-penetrative positions now.

Jan. 19: Had sex (standing, from behind).  Sex pain and cramping were a zero!

Jan. 29: Had sex (standing, from behind).  Sex pain and cramping were a zero!

Feb. 23: Had sex (standing, from behind).  Sex pain and cramping were a zero!

March 7: Had sex (missionary, and sideways spoony-sex).  Sex pain was a 3 out of 10 and cramping was a 3 out of 10, which lasted into the next morning.  I had to take a Tylenol PM due to the pain.  It was also the day after my period ended, so things may have still been tender.

March 12: Had sex (me on top).  Sex pain was a zero, but cramping afterward was a 2 out of 10, which lasted about an hour.

**

That’s the extent of my tracking our sexual encounters and pain. We went from having sex maybe once every month or two to multiple times per month!  I felt like I was getting the “old me” back!  I was far more confident, less scared (although still a bit scared…), and very grateful.  And I even instigated several of our sexual encounters.  Woohoo!

Whether it was the magnets in the Vuva dilators, or the placebo affect making me feel better, or having recovered more fully from my September surgery (but remember, I did have this pain prior to surgery), or whatever – I’m grateful.

I must be honest – I haven’t used my Vuva dilators since March because life has been hectic and I haven’t set aside 20-30 minutes of my day.  I’ve been experiencing minimal pain with sex once more, and very minimal cramping.  But guess what?  After typing up my log today, it has renewed by desire to pick the program back up.

I am so grateful to Tara for the products.  And her support and encouragement.  If her products can help other women have less pain, I think that’s wonderful!  If you’d like to look deeper into Vuva Magnetic Dilators, the idea behind them, the instructions, the testimonials, or even purchase a set yourself, please check out https://www.vuvatech.com/