One of my readers recently contacted me asking if I could do some research for her. Her physicians suspect she may have hyperplasia. What is that, you may ask? It’s the changing or enlarging of cells or organs which may develop into cancer. Specifically, she is undergoing tests to see if she has endometrial hyperplasia. Now what’s that? It’s when the uterine lining (the endometrium) is too thick. Her question? Is there a link between Endo and hyperplasia?
I found this to be very interesting as I had an MRI before my diagnostic surgery which found I had abnormally thick uterine lining. The first part of my surgery last year was to go in and perform a D&C (dilation & curettage) to remove some of the thick lining. So now I’m not only researching for my reader, but for myself (although my D&C biopsy came back normal).
So I posted about my poo diary this morning, but you don’t know WHY I have to keep one…
So Saturday I had an appointment with my PCP. Well, the Physician’s Assistant. It was wonderful! I was going in to get a referral to a GI doctor because of my poopy-gut-pain (knives, daggers, glass feelings when I poo) and we talked for nearly an hour about my Endometriosis, my diet, my supplements, my birth control, and my poopy issues. She wasn’t quick to jump to conclusions of IBS or Crohn’s, which I valued! And we even discussed the possibility that my Endo and/or adhesions may have returned, which may be causing my renewed poopy-pain (been poopy-pain free for nearly a year, then *blamo* they’re back). At the end of our lengthy conversation, she stuck her finger in my butt (wooooohooooo), said that I have a sharp 90 degree angle inside (which she said isn’t normal, but may not be bad) and it may truly be that adhesions are pulling my insides out of whack. Especially after I told her my op report said Endo and adhesions “obliterated my cul de sac”- she understood right away that pulls everything and can cause havoc with rectum and bowels.
The medical community has a standard of care for Endometriosis.
There are many physicians who have heard, and treat, Endometriosis. And there are many still who have not heard of it, nor know the first thing about treating Endometriosis. With that being said, is there a medical-community standard for successfully suppressing symptoms of Endometriosis? In this modern day and age of scientific discovery, you’d think yes…but…
Some physicians will operate, surgically removing or destroying Endometriosis implants and scarring from the pelvic cavity and beyond. Some physicians refuse to operate.
Some prescribe Lupron Depot with the “Add Back” pill. Some refuse to prescribe the Add Back pill. And some refuse to prescribe Lupron. Some prescribe Depo Provera, others prescribe Zoladex, others Danazol, others Lanzopral.
Some suggest hysterectomies. Others are vehemently against them.
Some suggest birth control pills, IUDs, implants, or a “ring.” Others do not.
Many prescribe NSAIDs and pain killers. Many do not.
And while any of these above-referenced treatments may work for some women, they do not work for all women…
The medical community still does not know what causes, contributes to, or sustains Endometriosis. Without that knowledge, they cannot begin to iron out a standard of care for all women, let alone a cure. It’s trial and error. Hit and miss.
Have you heard of the Wurn Technique? I hadn’t until a few weeks ago when I received an email from Clear Passage with links to a recently-published study showing the Wurn Technique can improve infertility issues, as well as reduce Endometriosis pain. Are they claiming to cure Endometriosis? Not at all. But they are claiming their technique may help reduce your pain and may increases your chances of becoming pregnant. So, curious as I was, I read up on it, asked questions, and now I present this information to you!
Personal Note: I am not endorsing Clear Passage or the claims made in these studies or their webpage. I am simply pointing you, the curious reader, in a direction you may not have located otherwise. Always, always, ALWAYS do your own research. And choose a treatment that feels right for you. If you have any questions about the Wurn Technique, please reach out to Clear Passage by email or 1 (352) 336-1433. They will answer your questions and, if you so desire, schedule a phone consultation with one of their therapists (for free) to see if this is a viable treatment option for you.
Today’s quote is by one of my absolute favorite authors when I was in my teens, Bodie Thoene:
“Being brave…is not always being unafraid. Maybe it’s more like doing what you know is right even when you’re too tired. Or scared. It’s going on and doing it anyway…even when you think you can’t take one more step.” (excerpt from The Key to Zion)
A lot of EndoWarriors I know are scheduling surgeries over the next few months, undergoing new MRIs, are meeting new doctors, or undergoing clinical trials. Each of the has a bit of fear in their voices, a bit of hesitation, and all are full of hope. Today’s quote is for them.
And for anyone going through something where they need to rise above their fear and push forward. You are incredibly brave. All of you.
I’ve read bits and pieces here and there that Endometriosis can grow on your heart (or the lining of your heart). And have heard from a friend that she may have it on her heart. That’s scary business!
Which got my juices flowin’ to find the documented cases of Endometriosis on the heart, how it was excised (if at all), etc. Here goes ( PS – there’s not a lot out there…)!
Endometriosis is usually found within the pelvic cavity, but has also been known to travel northward and latching onto the liver and diaphragm. It has also been found on the membranes surrounding the lungs. Even rarer, it has been found on the brain, in the lymph nodes, and on the eyes. But today, we focus on the heart…which is also SO INCREDIBLY RARE. Please, I’ll preface it by saying this is so super duper rare.
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.