endometriosis-foundation-of-america

It hurts to have sex…

| Bloomin' Uterus
A bed with the blankets drawn back revealing the sheets and four pillows

So this entry’s going to get a bit personal.  And possibly full of Too Much Information.  But it is a topic that needs to be addressed.  Not only for myself, but for countless otherssuffering from the same issues.

One of the symptoms of Endometriosis for a lot of EndoWarriors is painful sex (either during, after, or both), and it’s estimated that more than half of the people with Endo suffer from it.  The fancy name for pelvic pain during or after sex is Dyspareunia. It’s common and it could have a myriad of causes and factors.  Some of those factors can be vaginal dryness, herpes, Endometriosis, ovarian cysts, fibroids, Adenomyosis, uterine tilt, bowel tenderness or fullness, pelvic inflammatory disease, infections, or bladder issues.  The pain can be limited to the vaginal opening or canal, or it can extend deeper into the pelvic region and thighs.  This pain can stop as soon as sexual activity is stopped, or can last for hours, or even days afterward.  It can be a dull ache, a sharp pain, stabbing sensations, and can range from barely there to excruciating.

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The Endometriosis Foundation of America’s 2015 Medical Conference

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Once a year, the Endometriosis Foundation of America hosts a Medical Conference, a Patient Awareness Day, and their annual fundraiser, the Blossom Ball.

A certain organization that shall remain unnamed charges nearly $100 for a DVD collection of their medical conference from over a decade ago.  I purchased those DVDs, and have no regrets about spending the money.  However, I am so grateful that the E.F.A puts their conference speakers’ videos online…for FREE…for our education and enjoyment.  I will never be able to afford to go to their conference in New York and love that they make the contents of the conference available to the rest of us.

If you wish to watch the E.F.A.’s videos, they are broken down into small videos of each speaker. I haven’t finished watching them all myself yet, but wanted to make sure you were aware of these amazing resources. 

Enjoy.  Learn.  And pass it on.

Yours,

Lisa

Silent Endometriosis

| Bloomin' Uterus
Woman holding her index finger to her lips to shhh someone

There are many usual signs and symptoms of Endometriosis.  If you suffer from this disease, you know them all too well. One of our readers, Tanya, let us know that she suffers from “Silent Endometriosis.”  What’s that?  She has an official Endometriosis diagnosis, but only some of the symptoms associated with Endometriosis.  Some people with Silent Endo don’t have any Endo symptoms (this is known as asymptomatic Endometriosis). Does that make her any less of an Endo sufferer? No, not at all.  She suffers from the same invasive disease as the rest of us.  Just in a different way.

A whole slew of questions were raised, which we’ll look into:

  1. Why do some people present with classic symptoms like crippling pain and some don’t?
  2. And, given that silent endometriosis exists, this makes me wonder if the overall incidents of endometriosis is higher than is usually quoted. How many have this disease and have no idea?
  3. Since the symptoms don’t present as normal in silent endometriosis, what are some of the other signs that people possibly facing this condition can look out for?
  4. Why do some patients who are riddled with endometriosis have no pain, and others with very little endometriosis have excruciating pain?
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Frozen Embryo Transfers & Endometriosis

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Frozen embryo transfer medical tubes

A lot of people have trouble becoming pregnant, whether or not they have Endometriosis.  The question has been raised : if you have Endometriosis and are undergoing frozen embryo transfer (FET), which treatment regimens and protocols have the highest successful pregnancy rate?

I myself have never considered IVF and had to do a bit of initial research on the differences between fresh and frozen embryos, IVF, etc.  I am so grateful an EndoWarrior asked this question; brought this struggle to my attention.  So if you already know about these, please bear with me as I learn.  Otherwise, skip passed these first few categories to the knitty gritty below 🙂

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The Endometriosis Foundation of America’s Donor Spotlight

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Endometriosis Foundation of America logo

Today I had the honor of being featured in the Endometriosis Foundation of America’s Donor Spotlight!  I have enjoyed our interactions and communications with the EFA so much over this past year.  And being able to raise funds for their efforts.  They’re a huge organization, yet speak to us “little people” with such support and respect it’s incredible.  And now this?  I’m overwhelmed!

We will continue to do great things together.  All of us.

Yours,

Lisa

Why I support the Endometriosis Foundation of America

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Bloomin' Uterus logo surrounded by question marks

Based on yesterday’s post about the Endometriosis Foundation of America donations, some of you have asked what outreach programs the EFA offers.  What are they doing with the money they collect from donations?  How are they helping raise awareness for Endometriosis?  How are they helping with research?  How are they helping EndoSisters with their disease?

Well, ask and you shall receive!

With their permission, I’ve posted a brief summary of their programs and efforts:

Endometriosis

  • An often painful disease affecting multiple body systems
  • Occurs when tissue similar to the endometrium (lining of the uterus) is found in areas outside of the uterus
  • Approximately 1 out of every 10 people born with a uterus live with endometriosis

The ENdometriosis: Promoting Outreach and Wide Recognition (The ENPOWR) Project

  • The EFA’s school- and community-based education and outreach program, consisting of a 45-minute interactive discussion differentiated for specific audiences
  • Supported by significant grants from the New York State Senate and Department of Health ($650,000 over three years)
  • To date, the ENPOWR Project has made 310 presentations to sites throughout New York City, Long Island, Albany, Syracuse, Rochester, and Westchester, reaching over 7,400 adolescents
  • ENPOWR has a 91% return rate to sites

The ROSE (Research OutSmarts Endometriosis) Study

  • The first project in the United States to solely investigate endometrial tissue to the deepest genetic signature
  • The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with the disease
  • The EFA’s sponsorship of ROSE at the Feinstein Institute is one of our crowning achievements, and just the beginning of a long-term partnership in endometriosis research

MIT Center for Gynepathology Research

  • Established in December 2009 by Linda G. Griffith, the School of Engineering Teaching Innovation Professor of Biological and Mechanical Engineering and director of the Center
  • The country’s first research center in gynepathology
  • The center is currently working on creating a software application/mobile app to raise disease awareness and to gather better symptomatic data from patients, starting with their first doctor’s visit

Annual Medical Conference

  • An annual gathering of medical professionals to address the controversies surrounding endometriosis, improve treatment options, and to establish that the disease must become a research priority
  • For 3 years, the EFA hosted a Nurses Conference, a separate educational event for nursing professionals
  • Beginning in 2015, our Medical Conference will include all allied health professionals
  • Unable to attend (like myself)?  You can watch (for free!) videos of their past conferences.

Annual Patients’ Day

  • A multi-disciplinary collaboration for women and their loved ones to meet each other, share their journeys, and “ask the experts”
  • The Annual Patient’s Day usually falls within the timeframe of their medical conferences.  

Blossom Ball

  • The EFA’s annual gala and sole fundraising event to support efforts to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research. Each year they host the Blossom Ball as the fundraiser.

The Endometriosis Foundation of America is doing a lot for our disease; not only searching for a cure, but educating women, their loved ones, nurses, and doctors alike.  I hope you can see why I choose to support their efforts through my Bloomin’ Uterus fundraising (the walk, the buttons, and the t-shirt sales).  If you would like to support the EFA, you can either do so through my fundraising efforts or directly through the EFA’s webpage.  Don’t want to support the EFA, but do want to support endometriosis research, education, and awareness?  There are so many organizations out there!  Do the research, find the one you feel best about, and give it a go! 🙂  There are no wrongs or rights here; only action.

Truth, Theory, or Tall Tale?

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You may say, “I don’t know anybody that has Endometriosis.”

Theory

One in ten people born with a uterus suffer from Endometriosis.  Many suffer in silence because it can be an embarrassing disease, laden thick with affiliations toward periods, menstrual flow, sexuality, and stereotypes.  Chances are that you know someone who has Endometriosis, or know someone who knows someone that has it.  And you know what else? Famous people have Endo : Whoopi Goldberg, Susan Sarandon, Cyndi Lauper, Dolly Parton, Pamela Anderson, and Hillary Clinton are just a few.  There are so many.  And it is suspected that Marilyn Monroe also had Endo.  See?  You know someone who has it.  Might as well learn the signs and symptoms…

Susan Sarandon speaks out about Endometriosis at the Endometriosis Foundation of America’s Blossom Ball, an annual fundraiser

And Whoopi spoke at another EFA Blossom Ball event

I appreciate these women so very much for taking the time out of their busy schedules and speaking out about this disease.

Our Endo Awareness/Support Walk is in Six Months!

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2015 Endo Walk group photo
2015 Bloomin’ Uterus Endo Awareness & Support Walk

The Bloomin’ Uterus Endometriosis Awareness & Support Walk is only six months away! Six months!

With that exciting realization, I followed up with the Endometriosis Foundation of America this morning to check on the progress of their 2014 financial audit.  As you are likely aware, any funds I raise for the walk are donated directly to the Endometriosis Foundation of America.  Gofundme, in partnership with Wepay, take their small percentage of each donation for a service fee, but the rest of the funds go to the EFA.  I don’t see one cent.  The same is true for any Bloomin’ Uterus t-shirt sales (these will go live again in late January 2016) – 100% of the profits are directly donated to the EFA.  I, again, do not see one penny.  I wanted to make sure that your (and my) donations actually went toward research, education, and awareness.  Not my pocket.  Not venue fees.  Just exactly where it should be going: education and research.

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Our 2015 Endometriosis Awareness Walk

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Group photo from 2015 walk

Good morning!

This past Saturday, March 28, 2015, was our little Endometriosis Awareness Walk around Lake Miramar in San Diego, CA!  This was not affiliated or associated with any organization’s event: just a bunch of EndoWarriors, friends, and their support coming together!  

We had 20 attendees!  Three of us actually suffer from Endometriosis; the rest of the attendees were family, significant others, and friends.  The sheer support that was present was overwhelming!  Everyone, including the wee kids, made the 5-mile walk around the shorelines.  Some of us were stopped along the way and asked why we were all wearing tie-dye or yellow and what the walk was all about.  We did it.  We did this…together.

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