Heather Roppolo-Guidone is a champion of women's health with a strong interest in endometriosis and pelvic pain gynepathology. An accomplished writer, she has worked with the clinical and consumer health industries for more than two decades to raise education and awareness about endometriosis and women's reproductive health concerns. She has served as the Center for Endometriosis Care's Surgical Program Director since early 2005 and collaborates extensively with organizations around the world to advance the art and science of treatment and research. She co-authored the text contained in various endometriosis legislative Awareness Resolutions passed by local and national lawmakers, including House Concurrent Resolution No. 291, a groundbreaking National Resolution. She is a Director on the Board of the Endometriosis Research Center and a member of the Executive Board of the American Society for Reproductive Medicine's Women's Council. Related information
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Interview With a Woman Who Had Endometriosis: Heather Roppolo-Guidone
Endometriosis is a common health problem in women. It occurs when endometrial tissue grows outside of the uterus on other organs or structures in the body. Heather Roppolo-Guidone had a serious case of endometriosis: Stage 4. But this didn't stop her from having her "miracle baby" and getting well. Heather is dedicated to improving the lives and health of other women and girls with endometriosis. Learn more about the disease in this candid and personal interview.
Please explain what endometriosis is.
During normal menstruation, the body sheds the endometrium (the lining of the uterus). In women and girls with endometriosis (en-doh-mee-tree-OH-suhs), however, some of this tissue implants in areas outside the uterus. Unlike the normal lining of the uterus, this implanted tissue has no way of leaving the body. This causes endometriosis. Women with the disease can have internal bleeding from the lesions. They may get large cysts known as endometriomas. They can also have inflammation, scarring, and get painful adhesions (fibrous bands of dense tissue).
You often hear about 'cramps' with endometriosis. Cramps from endometriosis are different from regular menstrual cramps. Minor cramping during periods is totally normal, particularly in younger women. Inflammatory hormones are often linked to menstrual pain in a lot of women and girls, which may be easily resolved through over-the-counter medicine or other things. This is called "dysmenorrhea" (dis-men-uh-REE-uh). Dysmenorrhea is not the same as endometriosis — and not everyone who has painful periods suffers from the disease.
Typically, endometriosis forms on parts of the body like the bladder, bowel, intestines, ovaries, and fallopian tubes. Endometriosis can be linked to other health concerns, including autoimmune disorders. No one really knows why some women or girls get endometriosis and others don't.
Endometriosis affects 176 million women and girls worldwide during what should be the most promising years of their lives, at a price tag of nearly $100 billion annually in associated costs. Endometriosis may affect not just the woman or girl, but her family, employers, colleagues, friends, teachers, and loved ones. It's a serious concern desperately needing more attention and a cure.
How is endometriosis diagnosed?
A doctor can diagnose endometriosis by taking a small piece of the tissue through surgery. This is called a biopsy. Symptoms and some imaging tests can also be helpful with diagnosis. Symptoms of endometriosis include severe menstrual pain, pelvic pain, bowel or urinary disorders, painful intercourse or sexual activity, infertility, and pregnancy loss. Many women with endometriosis also have allergies, migraines, or fatigue that tends to get worse around their periods. Unfortunately, there is no total cure.
What symptoms did you have before being diagnosed with endometriosis?
I now realize that even before I got my very first period, I had a number of painful lower abdominal, gastrointestinal (GI), and bladder symptoms. My periods were always very painful. As I got older, the pain got worse and worse. Eventually it was unbearable. I had bowel and urinary symptoms. Sex was impossible. I felt exhausted all the time. There were many times when I couldn't get out of bed. Eventually, I would never plan an outing around my period. I was afraid to commute to my job. Dinners or nights out became a thing of the past. I lived in fear of my symptoms. Endometriosis can really start to control your life.
What was your first reaction to being diagnosed with endometriosis?
After being diagnosed in 1989, I immediately felt relief upon being given a name for the pain and symptoms I had. I was relieved to know that it wasn't in my head after all. That relief was quickly replaced, however, by a sense of despair when I was told I'd likely be infertile for life and that my pain would almost certainly return following surgery (which it did). There wasn't a lot of help or information back then about endometriosis, and even less of a support and education network. I felt really alone. I suffered a lot in silence.
What kind of treatment did you have for endometriosis?
Like most women and girls with endometriosis, I felt desperate for relief by any means necessary. As a result, I've had many surgeries ranging from laparotomy (lap-uh-ROT-oh-mee) to laparoscopy (lap-uh-ROS-co-pee). (A laparotomy is surgery in which a large cut is made through the abdominal wall. A laparoscopy is when a camera or other instruments are inserted into the body through small holes in the abdomen.) Years later, after my son was born, I had a total hysterectomy. Before that, I also tried taking birth control pills and a GnRH agonist (AG-uh-nyst). Nothing worked, and the GnRH therapy had such bad side effects that some days I really lost hope.
Finally, I had a laparoscopic excision (a kind of surgery that removes growths and scar tissue) with one of the world's great surgeons. For the first time in a very long while, I finally experienced a better quality of life. It was such a gift.
But I also believe strongly in self-empowered treatments. Women should know that although endometriosis cannot be cured, alternative therapies like diet and nutrition, acupuncture, and physical therapy are good ways to take control of your body and might help manage symptoms.
How did this treatment affect you, both physically and emotionally?
Women and girls with endometriosis will tell you that it makes them feel very alone. It affects every single aspect of your life: relationships, physical and emotional health, work, school, social engagements, and just normal day-to-day life. I experienced all of that.
People often react strangely to invisible illnesses, too, particularly those centered around menstruation. They either don't talk about endometriosis or the treatments with you, or they offer well-intentioned but incorrect advice based on what they've heard from others. For example, some people may say, "Just have a hysterectomy, you'll be cured!" This can leave women feeling angry because they can't simply "get better." I felt physical pain and emotional pain. I lost some relationships. I had body image issues due to the weight gain caused by hormone injections. I felt frustration, aggravation, a sense of inadequacy, fear, and depression. I felt all of these things.
Living with a chronic illness is a lot like grieving. I've lost count of the times I bargained with the universe for one single day without awful bowel symptoms and crippling pain that kept me in bed. I felt depressed when the universe didn't deliver and another month went by and I couldn't get pregnant. I was so upset that I couldn't make those around me, including my doctors, understand. And then I got angry.
Anger can be a gift. It can force you to make changes. That anger finally led me to find the surgeon who would change my life. The surgeon treated my symptoms and restored my fertility through a complex, six-hour surgery involving my bowels, bladder, diaphragm, ovaries, and kidney.
Was your pregnancy difficult because of endometriosis? Please explain.
After six years of infertility I got pregnant less than a month after my excision surgery. Almost immediately, I started suffering from unrelenting nausea and very painful GI problems. It went downhill from there. Ultimately my son was induced early. Immediately afterwards, because of postpartum complications, I had to undergo surgery. I was in post-op recovery and my son was in the neonatal intensive care unit (NICU). Trust me: It was nothing like the movies where the new mom and baby are camera-ready.
Nonetheless, I'd change nothing about the experience. I know all too well the pain so many others struggle with every day. I still feel guilty, even now, for talking about my pregnancy when there are so many women with endometriosis waiting month after month for that "positive" sign on a pregnancy test.
What advice do you have for women with endometriosis?
Terrible pain that interrupts your life is not normal! Even though the media and society tell us that menstrual pain is "part of being a woman" — it isn't! Women and girls need to know that early intervention is the best prevention against long-term symptoms, including infertility. Any woman or girl who suffers from pelvic pain, painful periods that keeps her from living her life the way she sees fit, GI or urinary dysfunction associated with their cycle, or painful sexual activity should see a doctor. If the doctor dismisses you, find one who will listen. (Learn how to get a second opinion (PDF, 262 KB) from a doctor.) Endometriosis can and should be diagnosed early and effectively treated. There are specialists around the country who have dedicated their lives to healing women through surgical treatment.
My life has revolved around endometriosis for decades, both professionally and personally. It changed the course of my entire being — in some bad ways, and in some really great ways. I would not be where I am now or have met the incredible women and professionals I have the privilege of collaborating with if I had not heard the word "endometriosis" all those years ago. For that, I'm grateful to the disease, which sounds odd to say. I'm well now, after my long and difficult journey. Still, too many others are not well, and so for them, I fight onward. I speak for those who cannot find their voices.
When you're not working toward a cure for endometriosis, what things do you like to do to stay healthy?
Nutrition and exercise are a big part of my "maintenance." If I don't exercise and eat right, I pay for it through exhaustion, weight gain, and burnout. I try hard to limit my stress and find healthy outlets for it. The key to managing endometriosis, or really any chronic illness, is to use the best medical resources available together with your own empowered lifestyle choices. I find it important to keep a good sense of humor.
My life revolves around my "miracle baby." He is now a teenager and affectionately tries my patience more than endometriosis ever did. I am married to the most tolerant man in the universe for 20 years. He saw me through most of my treatments and suffered right along with me. As a family, we strive to stay connected on an honest, emotional level and stay healthy together. We travel often and we are always on the lookout for the next "foodie" adventure, theatre experience, or random exploration. It's really critical to make time 'away from the disease' for yourself and your family.
It's crucial that women and girls know they have the right to live well in spite of endometriosis. Everyone should be able to get the health care they need. We need to reach those suffering and let them know there is a better way. You don't have to settle for a delayed diagnosis or ineffective care. There is help, and importantly, there is hope.
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