Women's Health Stories

I’ve got 35 years of history with endometriosis, 23 and counting of which have been spent immersed in research, clinical education, advocacy and fighting for better policies surrounding the disease. I’m honored to serve as the Surgical Program Director of the Center for Endometriosis Care, where I’ve been for a decade. I’ve sat on the Board of the Endometriosis Research Center since 1997 and have consulted to some of the leading organizations in women’s health. I routinely teach clinicians, nurses, healthcare workers, students, legislators, media and society about endometriosis to increase awareness and expand fundamental pathways towards better diagnosis and management.

None of this matters, however, more than the fact that I too am a woman who has experienced Stage IV endometriosis, 'frozen pelvis,' adenomyosis, leiomyoma and primary infertility.

My experiences with the disease began early on, even before my first period. At a time that was supposed to be the most socially and academically engaging, I missed so much. In the late 80s, the 10th doctor on the diagnosis train finally told me my symptoms were real and ‘it might be endometriosis.’ A 9-hour, hip-to-hip laparotomy later, I was validated: stage 4 disease. The devastating news that I would never have children and needed a hysterectomy dealt a blow, but life went on. As most sufferers do, I overcompensated. My career track was defined by long hours, high stress and near-impossible standards, but I did well and even thrived – if you don’t count the fact that most days I wanted to crawl under my desk from pain and lay on my office floor sobbing, all the while still smiling on the outside. At the end of every day, I had no energy left for anything else. This went on for years, and my disease remained a secret I revealed only to a chosen few.

Endometriosis exacts a vast and painful toll on lives, including my own: significantly reduced quality of life, compromised academic and professional opportunities, impaired sexual and physical functionality, negative effects on relationships, losses in productivity, “in your head” diagnoses that led to crippling self-doubt, hopelessness and isolation, countless ineffective medical and surgical treatments and more. In a word: despair. Those who do not live with endometriosis - while sympathetic - can never fully comprehend the perspective of pain, devastation, isolation and missed opportunities that accompany it. It is difficult put into words the shame, fear, frustration, emotional, physical and financial consequences of this disease.

Instead of treating the disease adequately, incomplete surgeries continued to be performed on me, drugs continued to be injected and $600/hour ‘celebrity gyns’ insisted on hysterectomy, saying ‘there was no hope’ for my case. There was no white picket fence and happy family with 2.0 children and a puppy. There was, however, a husband who watched his wife live crippled by pain. There was a family who didn’t understand - and didn’t ask. Travel? Go out to dinner? Sex? Not a chance. Vacations? Vacation time was for sick days and surgeries. My best friend’s wedding? Missed. I hurt for these losses even now, decades later. Ultimately, 22 surgeries and countless drug therapies later, I finally met my doctor – 1,000 miles away - who changed everything.

The painstaking, 6-hour excision procedure my surgeon (who would later become my boss) performed on my bowels, ureters, kidney, bladder, diaphragm, tubes, gall bladder, ovaries and cul-de-sac resectioning saved my life in ways only someone who has made it to the other side of this disease can understand. About a month post-op, I became very ill. Bloodwork revealed a most shocking development: I was pregnant. At that moment, I knew I had overcome the worst this disease will ever throw at me. Laparoscopic Excision surgery changed everything. Ultimately, adenomyosis did lead to that hysterectomy, and I will never be “completely well,” given my extensive and damaging history with this disease. But I have a miracle child. I am endo-free. I have my life back. And I am still here. I’ve been afforded a lifetime filled not only with pain, but also of countless blessings and the most amazing mentors, teachers, friends and connections as a result of endometriosis. I am proof that our stories don’t have to end hopelessly.

The biggest barrier to effective care for the 176 million struggling is a lack of awareness at most levels of society. Hysterectomy, drug therapy and ineffective surgery are the routine recommendations, even today in our age of supposed medical advances and despite the fact that better options exist. Often, the disease is also sidetracked by a narrow-minded focus on fertility issues - when what healthcare providers should be focusing on is not an individual’s procreative potential, but the impact pain has on that person’s ability to make and enjoy their own choices; sexual, career or socially oriented. We need to help those with endometriosis get well. If we work together to better educate society about early intervention and gold standard, organ-sparing treatment, change our culture of misinformation and societal bias, and throw a lifeline to those struggling, we can make a positive difference. Those impacted by endometriosis deserve as much – and more.

My story is far from unique or the worst. I share it because I want others to know that if afforded access to educated providers and proper treatment early on, our suffering may be reduced - or possibly even avoided in some cases. If I had access to excision surgery early on, things may have been very different for me. While it’s too late to get back what the disease stole from me, it’s never too late to tell my story and encourage others down a different path. I share my scars in the hope that it helps someone else from acquiring their own…and because, sometimes, the journey is easier if we go with someone who knows the way.

Story written by Heather Guidone | CenterForEndometriosisCare.com