Facing the Pain: One Woman’s Battle with Endometriosis and Polycystic Ovarian Syndrome
Photo by Ron Dubick
Curled up in the fetal position, I’d clutch my abdomen as the cramps grew worse. With each wave of nausea, I’d breathe in and wish the pain away. Even at 14, I knew there was something wrong. None of my other friends experienced their “monthly gifts” quite like I did. None of them required heating pads, constant pain medication, days off from school and frequent visits to the nurse—who knew me by name.
Once a month she’d expect to see me. “That time of the month again,” she’d say, guiding me toward the pink beds. I’d lie there for an hour as the cramps roared through me. The pain radiated through my abdomen around my back, down my legs to my kneecaps. The nausea was unbearable.
Mother Nature would choose when she decided to bring my period. Sometimes I would go three months with no guest appearances. Other times it arrived for two months then disappeared for four.
My doctors said this was normal and gave me painkillers. At 16, I saw my first obstetrician-gynecologist, who ordered tests. He was the first person to give me some sort of diagnosis.
“You have cysts on your ovaries,” he said, pointing to the ultrasound machine. They’re harmless. They’ll go away.” Then he told my mom I needed birth control pills.
All in My Head
Women are resistant to pain, which often leads us to ignore vital warning signs. For years I tried to deal with pain, but I wanted doctors to know it was real. I was passed from doctor to doctor, from gastroenterologist to urologist, from general practitioner to obstetrician-gynecologist, and they would run expensive tests and draw buckets of blood. Jumping from birth control pill to birth control pill, I would navigate the mood swings like a ship at sea. With each pill there would be new, strange symptoms like hair loss, acne, weight gain. Finally, at 27, I was diagnosed with irritable bowel syndrome, a disorder caused by anxiety. Then my brigade of doctors slapped me with yet another diagnosis: hypochondria.
“Historically, until the 1980s, there were chapters in gynecological books on psychosomatic gynecology,” says Dr. Tamer Seckin, a world-renowned laparoscopic surgeon and president and medical director of the Endometriosis Foundation of America. “This was all about pain and how women make up pain, going back to Freud and the issue of secondary pain or projecting other issues. The myths and taboos about menstruation and the way doctors—even female doctors—treat female patients when they come in with pain, not only painful periods but other elements of pain, were never addressed.”
“It’s not in your head. It’s in your pelvis,” says Heather C. Guidone, surgical program director of the Center for Endometriosis Care in Atlanta, Ga. “It’s very frustrating to watch women go through this over the years and believe there’s nothing wrong. But where there is smoke, there is fire, and excision surgery can be extremely beneficial. We are teaching our girls that it is OK to suffer; it is OK to be in pain. And that’s not right.”
I knew something was wrong. I had to be my own detective. A quick Google search for “reproductive specialist” brought up a Web site for Reproductive Associates of Delaware, where I spoke with Dr. Rhonda Wright.
“Tell me about the pain,” Wright said. “What other symptoms do you have?” Not only was she listening and writing things down, she seemed to understand completely.
After more lab tests, I was delivered a firm diagnosis: polycystic ovarian syndrome, also known as PCOS.
“It’s a misnomer because the problem doesn’t arise from your cysts.” says Wright. “It arises from an imbalance of hormones.” On top of the PCOS, she suspected I had endometriosis and made an appointment for me to see medical director Dr. Barbara McGuirk.
Into the Vortex
Polycystic? Endometri…huh? I had to say the words over and over on the car ride home. I felt like I was being sucked into a black hole. I learned later that millions of women suffer PCOS or endometriosis. Millions are in pain, frightened and alone.
Blogger and health coach Amy Medling is one of them, which is why she started the PCOS Diva Web site.
“I want women with PCOS to know that PCOS isn’t an end-of-the-world diagnosis,” says Medling. “It’s an opportunity to live life like a diva. By taking control of your health and making a commitment to consistent lifestyle change, you can successfully manage PCOS.”
Medling suggests that women with PCOS eat a gluten-free, dairy-free and soy-free diet that’s high in vegetables and low in fat. She also recommends exercise, meditation and striving for a positive outlook.
Making lifestyle changes is important, but you should be in the right frame of mind. I didn’t know how to take control. I didn’t know where to start.
After talking to McGuirk, I went with the laparoscopic surgery. I figured I would tackle the endometriosis first.
Surgery was followed by a period of rest and healing. I was thankful to have a great surgeon who took time to explain everything to me and listen to my concerns. McGuirk found endometriosis lesions on my uterus, bladder and intestines. That explained my digestive problems.
“In the future I want this kind of surgery to be something everyone has the right to,” says Seckin. “Just as people have the right to vote, the right to carry a child, it should be a right to have your endometriosis properly treated.”
I was shocked by just how many women had no idea about endometriosis, or that their pain could be treated. Most didn’t know about PCOS either, though they exhibited the symptoms. I’ve made it my mission to make a change.
Sometimes when your body is sick your mind becomes sick, too. After the surgery, endless doctors’ visits, and nights of excruciating pain, I found myself in a dark place. I wondered why this was happening to me. What had I done to deserve this?
I was comforted to speak with other PCOS divas and endo sisters via Twitter. Some had been through 10 to 15 surgeries, endured excruciating pain, relied on narcotic pain killers, and lived through the anguish of multiple miscarriages. How did I have the right to complain?
The surgery wounds began to heal and I felt hope. I realized the importance of staying positive and I started to pull myself out of that black hole.
With help from PCOS Diva, I managed my symptoms by changing my diet. I took yoga and exercised. Yoga, in fact, helped both my PCOS and endometriosis symptoms.
Allanah Law, yoga teacher, therapist and founder of Yoga Yin, a yoga center in Australia that focuses on women’s health, understands first-hand the pain that accompanies endometriosis. After years of suffering, surgeries, and daily combinations of Codeine and Naprogesic, she decided to take up yoga. It was the best decision she ever made.
“Within the first five years of practicing yoga regularly,” she says, “the pain had dulled from severe to almost non-existent. I also began taking Chinese herbs and, by 32, I was pregnant with my first child.
“In yoga, we focus on calming the mind and letting go of sensation in the body. Yoga does not necessarily heal your pain or disease, but it can change the way you think about it.”
Law says women with PCOS or endometriosis should try yoga. “Both endometriosis and PCOS are hormonal issues,” she says. PCOS is a disease where androgens are increased and progesterone is lowered, leading to an increase in testosterone in the body. Endometriosis, on the other hand, is aggravated by excessive estrogen. Yoga rebalanced the body’s endocrine system, bringing estrogen, progesterone and testosterone into balance.
Yoga became part of my fitness routine, and I felt better physically and emotionally. The more I examined the foods I ate, the better I felt.
“I always tell my patients not to eat anything your grandmother wouldn’t eat,” says McGuirk. “If you can’t pronounce the ingredients, then you should definitely not eat it.”
I began to see light at the end of the tunnel. I understood what Medling meant about keeping a positive frame of mind, and what Law meant when she said to let go.
Today I feel healthier than I have in many years. I take each day as it comes. Some days are worse than others, but I’m ready to take control of the pain.
I’m thankful for this journey. It made me who I am today. And I hope for a world where women’s reproductive health is given the attention it deserves.