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.
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.
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:
Why do some people present with classic symptoms like crippling pain and some don’t?
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?
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?
Why do some patients who are riddled with endometriosis have no pain, and others with very little endometriosis have excruciating pain?
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 🙂
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.
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:
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 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.
You may say, “I don’t know anybody that has Endometriosis.”
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.
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.
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.