Wednesday 6 February 2019


Being diagnosed with endometriosis, and the fertility problems that often come with it, can bring on a rollercoaster of emotions. Shock, denial, anger, and depression are common. If these feelings are affecting you, try these smart strategies to help you cope.

If you’re ready to start a family, having endometriosis may make it more difficult. A review published in December 2012 in Obstetrics and Gynecology Clinics of North America indicates that as many as 30 to 50 percent of women with endometriosis struggle with infertility. The challenges are emotional as well as physical.

“If a woman has been diagnosed with endometriosis, which results in secondary infertility, and she has decided that she wants to start a family, then she’s experiencing distress from two different angles,” explains reproductive endocrinologist Judi Chervenak, MD, associate clinical professor of obstetrics and gynecology in women’s health at Montefiore Medical Center in New York City.

“The first [stressor] is that she has a medical condition, which is resulting in infertility and which could also be causing her physical distress,” Dr. Chervenak says. “But she also is experiencing emotional distress, in that her physical condition is limiting her ability for that which she so desires.”

From the wish to have a baby to the diagnosis of reproductive problems and the often lengthy process of trying to conceive, the experience of infertility can cause anger, confusion, depression, a sense of helplessness, and frustration.

Struggling With Loss
With infertility “you experience loss, the loss of the image you have of yourself as a healthy person, as a fertile person,” explains Mary Lou Ballweg, co-founder and executive director of the Endometriosis Association. “It’s like losing a dream.”

Shannon Carney, a 36 year-old from Milwaukee, experienced painful periods for years before she was diagnosed with endometriosis at age 32. “I had symptoms back as far as I can remember,” says Carney. She also had trouble conceiving. Around the time she was getting advice on endometriosis treatment options, she unexpectedly became pregnant. But the intense joy she felt turned into “the worst, devastating grief” when she had a miscarriage at eight weeks.
“How did I cope?” she asks out loud, “through self-educating myself, which then led me to other women who had similar experiences. Everyone has their own road map. It’s too late for me — I can’t go back and change things. I can’t go back to get the diagnosis 10 years earlier, when I was healthier and could have tried for a baby then. Now I want to spread education and awareness about endometriosis to as many women as I can,” says Carney, who is the education program coordinator for the Endometriosis Association.

Tips for Handling Endometriosis-Related Fertility Issues 
If a jumble of painful emotions is affecting you, take heart: there are resources you can turn to. Start with these tips:
Remember you aren’t alone. In the United States, about 1 in 10 women between the ages 15 and 44 have trouble getting or staying pregnant, according to the Centers for Disease Control and Prevention. And endometriosis affects about 176 million women worldwide — or about 1 in 10 women, according to the American College of Obstetrics and Gynecology. As many as half of these women are struggling to get or stay pregnant.

It’s OK to feeling anxious, sad, and stressed. “Infertility was long thought to be the cardinal symptom of endometriosis,” explains Ballweg. “But now we know that usually, pain comes first; long before infertility issues, there’s the physical pain of the disease.” This means you’ve probably been dealing with difficult issues for a while. So while the emotional pain of infertility is particularly difficult, it’s important to not feel weak in any way for feeling the way you do, or if you need help coping.

You may go through several stages of feelings. The process of coping with a fertility problem can be likened to the well-known “grief cycle” described by the Swiss doctor, Elizabeth Kubler Ross. This response to grief involves going through periods of shock, denial, anger, bargaining, depression, testing, and acceptance. Ballweg cautions that dealing with a reproductive problem, especially if you’re trying to conceive, may mean revisiting the stages of grief over and over.

Information is your friend. “The more you know, the more empowered you’ll feel,” says Ballweg. Learn as much as you can about endometriosis as well as infertility. Resolve from the National Infertility Association offers links to support, learning, and action on infertility issues around the country.

Develop an action plan. Keep an ongoing list of questions for your doctors. Knowing that you are taking positive steps forward will probably also make you feel more in control about your future. Ask for information on endometriosis resources in your community.

Don’t be afraid to ask for support. Whether it’s expressing yourself through journaling, talking to a social worker, or joining an endometriosis support group, it’s important to voice your fears and frustrations in some way. Endometriosis and general infertility support groups can be found all over the country.

The most important thing, says Ballweg, is to make getting well, not just getting pregnant, your focus. Things have changed over the last few years, she says. “It used to be, let’s just get her pregnant. Now it’s, ‘first, let’s get you well.’” And there’s so much that can be done to have that happen, she says.

When you’re in a lot of pain, and your life is upside down, it can help to learn about the disease, learn about the toxicities — learn about it all. “There’s so much to it, so much to learn and do about first getting well,” she says. (Everyday Health)

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