Endometriosis: Not What The Doctor Ordered
Being on the tail end of nine kids, I was often the person to move in with older siblings to help them out with their new babies and adjust to their new way of life. I would hear the horror stories of how women were treated in birth, the way that some doctors spoke down to their patients, and I watched as mothers suffered behind closed doors.
Personally, I was also told by many people, on many different occasions, that the tears of women were a form of manipulation. That nothing would get accomplished through crying and I needed to “suck it up” and “move on.” Move on.
I was continuously told that if I focused on the chronic pain that I experienced, I would waste my life away, never accomplish anything, and regret that time.
From as early as I can remember, I suffered from horrible stomach aches and a general overall feeling of unwellness. I wore only dresses through sixth grade because the irritation of a skirt’s waistband around my middle caused endless agony and pain. I was made fun of by classmates, adults, and even doctors. When I got my period at the age of 13, I was told there was nothing to really do about the pain except take birth control and stop complaining. I was dubbed a hypochondriac, told I was too anxious, just depressed. Some suggested that I probably had Lupus, Crohn’s, IBS, and every other disease under the sun.
I began to doubt myself. Maybe they were right; was I crazy, overly-dramatic and making a big deal out of nothing? Maybe I wasn’t even really feeling the pain at all? Maybe I was making it all up for attention?
Throughout the years I had various episodes that landed me in hospitals with no explanation and given no solutions other than morphine being pumped into my veins. I had ultrasounds, endoscopies, colonoscopies, endless imaging tests, and no answers. I stopped going to the emergency room for things that other people would have run for in a heartbeat.
But on one occasion, only a few months ago, I had a doctor who stood up, and crossed the room to stand beside me. For the first time, a kind young doctor said something to me that changed my whole narrative. He looked at me, and said, “I believe you.”
At the age of 25, I had never yet had a doctor say those words to me. Until that point, my pain was never acknowledged, since there had been no cause for it that they could find on tests, or see in front of their eyes. He admitted he didn’t know how to help, but that he still believed me. Knowing that someone believed me encouraged me for once that maybe, I wasn’t crazy, and that I couldn’t give up.
Because of this doctor’s encouragement, I was able to rally myself to continue looking for an answer, even though all hope seemed lost. About a year later I found an incredibly passionate, patient doctor, who diagnosed me with Endometriosis.
At the age of 25, I am able to look back now at everything that has happened to me and that I have accomplished, with pride. Motivated by everything that I saw as a child in the homes of new mothers, and from my own experience, I’ve done everything within my power to change the way that women are treated in the medical world, today. I’ve done half a degree in music, and received Certification to be a Birth and Postpartum Doula, as well as a Childbirth Educator. I opened my own successful Birth Business, and I am currently attending university for a degree in nursing, full time while running my business full time.
I’ve done it all, not despite the pain, but because of it. Some days I didn’t know how I was going to pull myself out of bed, but I did it. I’ve continued through the occasional canceled client meetings, with days on end in bed, thanking G-d that none of my clients were in labor. I’ve kept working with three Advil, in the middle of a monstrous period, supporting a laboring mom, and running to the bathroom to vomit in between double-hip-squeezes and lower back massage. I’ve continued through missing classes but still passing tests.
I often feel that I still can’t talk about it, since the stigma of the disease is so overwhelming, it often makes people feel that they can’t trust me to show up for them. Because it makes me “weak” in the eyes of some. When people hear the word Endometriosis, they assume that it means I can’t be there for them in the way they need. That I’m unreliable and undependable, even though I’ve proven myself to never let people down.
I realize now that acknowledging pain and struggles is not “wasting our lives” or giving up opportunities. I’m not one to look for excuses to lie in bed all day. Acknowledging what I’m feeling actually gives me a better opportunity to deal with it and properly treat it. In doing so, I can have a fuller life. I can do more and give more.
As I’ve learned quickly from being in this community, I’m not the first, and unfortunately won’t be the last to have experienced this story. Joining Facebook groups, support groups and talking about it with friends brought stories pouring out of the woodwork.
On average, it takes 10 years for a woman suffering with Endometriosis to get a diagnosis (https://www.ncbi.nlm.nih.gov/pubmed/12790847). It took me 12 years to be diagnosed. The disease, which affects 10-15% of the world’s women, and about 5% of the adult population, is more common than Crohn’s disease and even Diabetes, but it is not the first diagnosis that most women get. Instead, history has reminded us, time and time again, that doctors would rather turn to “hysteria,” and telling women they are being dramatic, than looking for answers for real problems that they just can’t yet see.
As a Doula I have watched so many mothers, unknowingly, be in tune with their bodies hours before doctors had a clue. This did not surprise me. Women like myself have been told for years, that what we are feeling is a figment of our imaginations. That both male and female doctors, who may have studied for years, always know our pain better than us.
In fact, women have been studying their own bodies their entire lives. But we plant this seed of doubt so early in the lives of young girls. We don’t understand why women are uncomfortable in their own skin as high schoolers, why dating is difficult, and why we struggle with our bodies in many ways.
A new generation is on the horizon. A group of young women that know we are our own best advocates. One that understands that for us to get the best treatment possible, we must prioritize our gut feelings. The Torah reminds us constantly that women are innately in touch with our feelings and bodies. It’s time we reminded ourselves that we have the power and strength within us to understand trust ourselves when we know something is wrong and fight for our health.
Dina Devora Jacob is a DONA Certified Birth Doula, CBI Certified Postpartum Doula and Lamaze Certified Childbirth Educator. She is the DONA International Ambassador for Israel. Born in New Jersey, in the United States, she is now living and serving the Birthing community in Jerusalem, Israel, and it’s surrounding areas. Dina Devora attends Sha’arei Tzedek Hospital’s Nursing school in Jerusalem, and runs her own Birth Doula and Childbirth Education business, BirthBuddy Israel. She enjoys speaking publicly about Women’s Health Empowerment in person, and widely sharing evidence-based information on women’s health related topics.