Tuesday, February 18, 2014

Bloggers Unite for #EndoMarch2014 Weeks 5 and 6: Raising Awareness

This has been quite a busy couple of weeks! I missed last week's blog post about what my favorite goal would be. Well, this week, I would like to talk about why it is so important to raise awareness and educate as many people as possible about endometriosis, inspired by the reason I missed last week's post: a bad ER visit. I went to a local hospital and was absolutely appalled by the care I received. After explaining that I had a history of severe endometriosis, kidney disease, and retroperitoneal fibrosis, I told them I was having terrible right sided pelvic pain, and pain in my right kidney. I was given only a "warm blanket" as pain relief until an ultrasound revealed two complex ovarian cysts on the right ovary, measuring a total of 5cm. I also had a 6mm kidney stone in the left kidney. When I tried explaining the nature of endometriosis, and mentioned advocating and going to the EndoMarch, the nurse asked why we were marching. I said that one reason was to get government funding for Endometriosis health organizations, and the nurse responded with, "And who would take that on? Planned Parenthood?!"

In light of that disgusting display of ignorance, I'm proud to announce that I have founded Ask Me About My Endo. I wanted to created a T-shirt I could wear when I visit the ER to encourage them to talk to me about my disease, and hopefully learn a little bit about it. 

Out of that tiny idea, a much farther-reaching project was born. Ask Me About My Endo (AMAME) is spreading endometriosis awareness and advocacy by getting people talking! Endometriosis affects 1 in 10 women, or 176 million women worldwide, with an average delay in diagnosis ranging from 6-10 years. Years of misdiagnosis and ineffective treatment negatively impacts the patient's quality of life. The physical, emotional, and social effects of endometriosis can be lessened with early diagnosis and complete surgical excision in many cases, particularly in coordination with a multidisciplinary approach to treating pain holistically. AMAME strives to get patients talking about their endometriosis instead of hiding it. Let's clarify the misunderstandings, dispel the myths, share effective treatment options, and refer to the best specialists possible! A three-fold program, AMAME incorporates online resources (website coming soon!), awareness merchandise, and non-profit efforts, such as the Endometriosis Awareness Music Project for teen outreach. To find out more and get involved, check out our Facebook page, Ask Me About My Endo, Twitter: @AskAboutEndo, or email: askmeaboutmyendo@gmail.com

I am so excited so start this project, and I can't wait to see what we can do! So...who will YOU talk to today?

Check out some of our first designs, which are perfect for wearing to the EndoMarch! I've already ordered my husband and myself lots of gear, and I can't wait to show it off! All merchandise can be found at the Ask Me About My Endo store

Can't wait to see everyone at the EndoMarch! 

Monday, February 10, 2014

Bloggers Unite for #EndoMarch2014:Week 4 - Interview with Heather Guidone

Over the past year, I have been so incredibly lucky to get to know Heather Guidone, Surgical Program Director at the Center for Endometriosis Care and member of the executive board of the Endometriosis Research Center. Heather is a tireless advocate for Endometriosis education and awareness, and a fierce friend! She is one of the most supportive, knowledgeable, and dedicated women I have had the privilege to meet along my journey toward healing, and I am so thrilled to share this interview with you for this week's assignment. Heather serves on the advisory board for the Million Women March for Endometriosis, and offers us her unique perspective as a professional in the field, as well as an Endo Warrior herself. 

1. Why did you become involved in the Million Women March?

I was absolutely honored to be invited to join the MWME Advisory Board. It is a real privilege to be part of this monumental effort to make advances in such a broad, public way and effect positive change towards government-funded research initiatives, legislative awareness, medical and nursing school educational imperatives and early intervention. If not detected early and treated properly, endometriosis can absolutely be a serious and debilitating disease with severe, far-reaching consequences, impacting every aspect of a woman or girl’s life – and the lives of those who care for her. The March is designed to make real strides on behalf of the 176 million women, girls, and even some men struggling with the disease, so that they can receive proper diagnoses, better care - and one day, a cure.

2. What is the biggest misconception about Endometriosis, and why is it so important to distinguish between the myth and the fact?

Unfortunately, endometriosis remains mired in myths, outdated beliefs and a culture of menstrual misinformation. The idea that pelvic pain is a normal part of ‘being a woman’ and particularly, that periods are a female’s ‘lot in life’ are such archaic taboos. Yet sadly, these misconceptions still continue to result in the ten-year average delay in diagnosis and wholly ineffective treatments that surround the disease. To be certain: pain associated with menstruation – or at any time in the cycle – which interrupts a woman or girl’s normal routine and productivity is never normal. Bowel, bladder and other organ dysfunction with or without menses is not normal. Painful sex is not normal. Infertility is not normal…and so on. These symptoms do not need to be accepted in silence. There are quality treatments that can, in many cases, alleviate or at least significantly reduce the effects of endometriosis.

3. If you could advocate for one goal of the Million Women March, which would it be and why?

Just one?! Ok, then early intervention. Meaning – we need to educate our adolescents as to what is normal and what is not. Minor cramping during a period is to be expected; period pain – or pain at any time - that makes a woman or girl miss school or work or otherwise impacts her ability to function isn't the least bit okay or ordinary. If we can drive that message home to the teens and adolescents who may have been ill-informed about ‘what is normal’ or are otherwise suffering in silence, so that they seek care with a specialist early in life, it may save - literally - years of needless suffering, failed interventions, possibly preserve future fertility, and protect quality of life in long-term for so many.

4. What do you wish everyone knew about Endometriosis?

Lots! That pelvic pain and sexual dysfunction is not a normal way of life because someone is female. That endometriosis is not simply the presence of ‘normal endometrium’ outside the uterus, caused by retrograde periods and easily cured by hysterectomy. On the contrary, endometriosis and normal endometrium differ vastly in terms of invasive, adhesive and proliferative behaviors, and we are probably born with the disease. That pregnancy, menopause and hysterectomy are not the mythical cures they have continually been touted as. Same for drug therapy; there has never been a drug to cure or otherwise treat endometriosis long-term. Drug suppression can help relieve symptoms for some, but only on a temporary basis. That ineffective surgery will likely not help and may even harm. Removing the surface of the disease from some areas is not sufficient; endometriosis must be removed ‘root to tip’ from all affected regions (excision surgery). That alternative therapies, such as diet and nutrition, acupuncture, physical therapy, and other complementary treatments can be extremely helpful at effectively managing symptoms on a non-invasive basis, particularly when combined with quality excisional surgery as the cornerstone of any effective management plan. That those affected by the disease aren't whiners, lazy or ‘making it up’ – their pain and debilitating effects of the disease are real. Above all else – that endometriosis is NOT a hopeless disease, and no one with endometriosis should ever feel alone or isolated.

5. Why is the Million Women March for Endometriosis important to you?

Having been at the first two Marches on DC almost 15 years ago, it is encouraging to see how the advocacy movement has grown by leaps and bounds since then. With social media, so much more networking has become possible, whereas historically over the past 20 years that I’ve been working in endometriosis, we had very limited options for outreach. Now, we can share data instantly across our collaboratives, patients can become educated – and empowered – through access to the latest, most accurate information, we are able to connect with so many others in the profession to train and increase education among providers, and awareness opportunities like the Nezhat Family Foundation March can take place on a global scale. It’s been very exciting to watch the groundswell of involvement literally explode on a worldwide level over the past years. The March gives the world an opportunity to hear our collective voices. Moreover, it is the first time an outreach effort has been backed by more than just a patient base; we have some of the most respected names in women’s health supporting the effort ranging from ACOG to AAGL.

6. After the Million Women March, how can we continue to advocate for and support Endometriosis awareness?

All women and girls with endometriosis can make a difference in the disease, anytime – there is no need to wait for a March or event. By sharing their story, they can be heard – and make the path easier for someone else behind them. Share legitimate, accurate educational information. Reach a hand out to someone who needs a lift up. Correct misinformation as you see it. Stop accepting subpar care as the status quo. The more we unify as one voice and insist on elevating this disease to the priority public health platform it deserves, the sooner we will achieve better treatment of those affected - and again, one day hopefully, a cure. Tell your story, share your voice, speak up. Anytime – anywhere. There is always awareness to be raised.

7. What message would you like to convey most about the Million Women March and Endometriosis? 

The Nezhat Family Foundation Million Women March for Endometriosis is the first internationally-coordinated campaign that will empower and unite those who are struggling with endometriosis - and their supporters - to take a real stand against the disease; it will educate society and raise awareness, promote early detection and improved treatments, and ultimately, effect real changes. The success of the March depends on YOU, so please consider joining these worthy efforts in any way you can! See you there!

Big thanks to Heather for sharing with us this week. Heather's work in the endometriosis community has inspired me to become an advocate, and I hope some day to be able to effect change and touch as many lives as she does every day. See you at the March!

Wednesday, February 5, 2014

Bloggers Unite for #EndoMarch2014: Week 3 - Letter to your Congressional Representative

I'm a little late to week 3 because I have been busy working on two projects: the support group Endo Sisters Healing Together, and an Endometriosis Awareness Music Project, that will combine original songs with awareness videos aimed at teen outreach and education. I've been a busy bee, also organizing a Boston FlashMob...but here it is! Week 3's assignment...letter to my Congresswoman!

I hope this inspires you to write your own letter to your representative! To find yours, head over here!

February 6th, 2014

Congresswoman Niki Tsongas
1607 Longworth House Office Building
Washington, DC

Dear Congresswoman Tsongas,

My name is Kelsey, and I have stage IV endometriosis. In the last year, I have spent the majority of my free time researching endometriosis, and becoming active in the endometriosis community. I have volunteered for various awareness projects, including a video documentary. I also recently co-founded Endo Sisters Healing Together, an online and in-person support group for New England-based women with endometriosis. I am writing to you today to tell you my story, and invite you to an amazing event happening in Washington, D.C. on March 13th, 2014. The Million Women March for Endometriosis is going to be a monumental event where women all over the world will be gathering in their nation’s capitals to advocate for endometriosis awareness, education for medical professionals, early screenings, and allocated funding for endometriosis. I want to share my story with you to tell you why this day is so important to hundreds of millions of Endo Sisters around the world.

Endometriosis is a very common, misunderstood, and under-diagnosed disease that affects 1 in 10 women, or roughly 176 million women worldwide. In women with endometriosis, cells similar to the lining of the uterus, the endometrium, are displaced during fetal development and grow in other places in the body. These displaced cells, or lesions, can create their own estrogen supply, essentially feeding themselves. As the disease grows and matures, it develops nerve and blood supply. These complex glands and stroma react to cyclical hormone changes, causing inflammation, sticky bands of scar tissue called adhesions, which can cause anatomical distortion and organ dysfunction, and debilitating pain daily, with periods, and with intercourse. Endometriomas, cysts formed from endometriosis, can grow on ovaries, damaging the tissue around it. These do not resolve on their own, can cause extreme pain and bleeding if they rupture, and require surgical excision. On average, it takes a woman with endo eight years to get diagnosed.

One of the biggest problems with endometriosis is the delay in diagnosis. On average, a woman with endometriosis suffers eight years of being told her pain is all in her head, that pain with periods is normal, and that there is nothing wrong with her. In reality, endometriosis can cause real damage to not only reproductive organs, but every other organ in the pelvis. Endometriosis lesions and adhesions are commonly found on the uterus, ovaries, bladder, bowel, peritoneum (lining of the pelvis), and are also found on the ureters, kidneys, and rarely in the heart, lungs, and brain. Endometriosis causes debilitating pain, but can also lead to life-threatening complications such as bowel obstructions, kidney failure due to retroperitoneal fibrosis (scar tissue growing on the ureters), as well as impacting her ability to function daily.

The wonderful news is that with early diagnosis and complete excision, young women need not suffer for years in pain, and endure hormonal suppressive treatments that come with their own damaging side effects. There are only 100 excision surgeons in the US skilled enough to remove disease effectively. With excision, the chance of recurrence is very small, because they cut out the disease like a cancer, rather than burning the surface of the disease. The common technique used by the remaining 52,000 gynecologists is called ablation, which leaves disease beneath the burned surface that can continue to grow and come back. Endometriosis is not treated through hormonal suppression, hysterectomy, menopause, or pregnancy. The only effective way to remove disease is through excision surgery.

It took me nearly 15 years, countless doctors and years of hormonal suppressive therapies to begin on the path to true healing. Birth control pills, progesterone therapy to shut down my ovaries, and Lupron caused symptoms including medical menopause, hot flashes, night sweats, extreme weight gain, increased blood pressure and higher cholesterol, and depression. The worst symptoms came with Lupron, a drug developed for prostate cancer, which caused hair loss, ovarian dysfunction, and bone density loss in my spine. This could have been avoided if my doctors had been more educated in the origins and effective treatment options for my disease. I continue to experience some long term side effects from these drugs, years later.

After 15 years, at the age of 28, a seven centimeter complex cyst finally convinced my doctors to perform a laparoscopic surgery. I had been begging for surgery since they first suspected endometriosis when I was 22. The surgeon assured me that she would use excision, but in reality, she merely burned the surface of the disease. Just six months later, my pain was back, and I was struggling to get pregnant. After discovering that I was not ovulating, a fertility specialist prescribed Clomid, and my life changed. I developed a five centimeter endometrioma on my right ovary, which ruptured. From that day on, my life changed dramatically. I was in extreme, daily pain, causing me to drop out of graduate school and spend the majority of my time in bed in agonizing pain. It felt like steel rods were in my body, and I could barely move. However, my doctor in Massachusetts refused to refer me for another surgery, saying it was too soon for my endometriosis to return. She threw her hands up and told me to try in-vetro fertilization. How could I be a mother when I could barely function from day to day? I needed help.

Finally, in June 2013, I traveled to St. Louis to have my second laparoscopic surgery. This excision surgery with Dr. Patrick Yeung, Jr., occurred just 11 months after my first surgery in Boston. Dr. Yeung found my pelvic organs completely adhered by endometriosis and adhesions. During a six hour surgery, 18 separate tissue samples, confirmed by pathology to be endometriosis, were found on my bladder, uterus, both ovaries, peritoneum, appendix, ureters, fallopian tube, left round ligament, cul-de-sac, pelvic brim, bilateral ovarian fossa, bilateral utero-sacral ligament, and recto-cervical space. I also had endometriosis on my bowel, and significant retroperitoneal fibrosis on my ureters. If left untreated, these conditions could have led to life threatening bowel obstructions or kidney failure.

Endometriosis is truly an epidemic. It is more common than AIDS and cancer. It is estimated to cost $119 billion annually in healthcare and loss of productivity in the workplace. Endometriosis causes severe damage to internal organs, and yet takes an average of eight years to diagnose. The majority of surgeons can not effectively remove the disease, and so women are put on band aid pain solutions, like hormonal suppression and narcotic pain medications. They struggle to function daily, miss work, drop out of school, and feel hopeless. You can help us make a change.

I hope you will join me in telling the world that it is time to end the silence!

I have also enclosed a copy of my full story of living with endometriosis.

For more information, please visit:

Thank you for your consideration, and I hope to see you on March 13th!