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Unfortunately, endometriosis remains mired in myths, outdated beliefs and a culture of menstrual misinformation.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!