Since the age of 12, Emily Chandler had always been told that her endometriosis pain just came with the territory of being a woman. But after years of suffering excruciating pain and struggling with infertility, she had enough and turned to Atrium Health’s Women’s Center for Pelvic Health for an expert level of care.

Women's Health | 5 years ago

Endometriosis Pain Isn't 'Just the Way It Is'

Since the age of 12, Emily Chandler had always been told that her menstrual pain just came with the territory of being a woman. But after years of suffering excruciating pain and struggling with infertility, she had enough and turned to Atrium Health’s Women’s Center for Pelvic Health for an expert level of care.

Since she was 12 years old, Emily Chandler had been told that her excruciating pelvic pain was ‘just the way it was.’ In high school, Emily would sometimes miss one day a month due to menstrual pain. She was told by many that it was just part of being a woman. She went on birth control pills to help the symptoms, which only relieved her pain minimally. She was unknowingly struggling with endometriosis, a disease that occurs when tissue similar to the uterine lining grows outside of the uterus, causing pain, inflammation, and often infertility. Emily had almost given up hope of feeling better, having less pain, and even having a child.

“I didn’t understand the science behind it all,” says Emily. “I wish I knew then what I know now. I would have fought a little more and found help earlier.”

With the help of Smitha Vilasagar, MD, FACOG with Atrium Health’s Women’s Center for Pelvic Health, Emily is now living with minimal pain and symptoms from endometriosis and also has a beautiful son.  

The fight for a family

Before her first visit with the Atrium Health care team, Emily and her husband had been talking about trying to conceive. They tried naturally for 1-2 years, but continued to have trouble. Finally, they turned to the Women’s Institute at Atrium Health. And through the care of the team at Atrium Health, Emily conceived through intrauterine insemination (IUI), a fertility treatment that involves placing sperm inside a woman's uterus to facilitate fertilization. Emily gave birth to a beautiful son, Bratton, in 2011.

Six years later, the Chandlers were ready for a second child. They tried on their own for months. And after a routine OB/GYN appointment, Emily was told she had a cyst on her left ovary, known as an endometrioma.  

Emily researched endometriomas and found that those with an endometrioma had a 90 percent chance of also having endometriosis implants elsewhere in the pelvis, causing pain, inflammation and scarring in the pelvis. Endometriosis is estimated to affect up to 10 percent of women and occurs more frequently in women with infertility. It is most commonly found in the pelvis and abdomen but has also been found in other organ systems, including the lung.

Even with this additional diagnosis, she was told she could continue fertility treatment. “We had three IUIs with no success. And with each cycle, my endometrioma had grown.”

After years of frustration, Emily’s health was taking an emotional toll on her and her husband.

“Endometriosis can have a detrimental effect on a woman’s quality of life; the associated symptoms are often debilitating, affecting all aspects of a woman’s life, including her personal family and social life, career, mental well-being, and sexual health,” says Dr. Vilasagar, a fellowship-trained minimally invasive gynecologic surgeon specializing in surgical and medical treatment of endometriosis.

In addition to the psychological struggles she was facing, Emily also started experiencing more pain than she ever had before. Her pain was so intense, she had to make several trips to the emergency department within two to three weeks. She knew something was not right. She went to see her primary care physician at Mecklenburg Medical Group, who quickly told her she needed to see Dr. Vilasagar for specialized treatment. Emily made an appointment to see her the next week.

The next steps

After meeting with Dr. Vilasagar for the first time, Emily’s hope was restored. “She was very attentive and reassuring. She thoroughly explained what was going on to me and my husband. She listened to every word I had to say and looked me in the eye,” says Emily. Dr. Vilasagar told Emily she was committed to helping her feel better. “After struggling for so many years…to hear someone say that was an answer to my prayers.”

Based on Emily’s research and Dr. Vilasagar’s counseling and recommendation, Emily decided to proceed with endometriosis excisional surgery with Dr. Vilasagar as one of the only surgeons in the region who specializes in this type of surgery. “I had researched enough about endometriosis that I knew I wanted the surgery. It was the only way I could possibly heal.”

There is unfortunately no imaging or lab test to identify endometriosis or predict its severity. Endometriosis is only definitively diagnosed by surgery with a biopsy. There is a spectrum of disease severity, ranging from superficial implants to deep larger nodules that can invade other tissues and cause significant scarring,” says Dr. Vilasagar.

And in April of 2018, Emily finally underwent laparoscopic excision of endometriosis surgery. This minimally invasive surgery is performed through tiny incisions on the abdomen to remove all implants of endometriosis, endometriomas, and the resultant scarring, while preserving the uterus, ovaries, and fallopian tubes. The benefits of a minimally invasive approach to this surgery include discharge home the same day, shorter recovery times overall, and minimal scarring.

“The goal of Emily’s surgery was twofold: to achieve pain relief but to also preserve fertility – remove the endometriosis and endometrioma but not remove the healthy tissue,” says Dr. Vilasagar.

“I woke up from surgery and could tell a difference. I had significantly reduced pain and cramping, and no longer had pain with bowel movements or urgency to urinate,” says Emily. Emily’s surgery was quite challenging as she had developed endometriosis throughout her entire pelvis, in addition to the endometrioma cyst. “It breaks my heart that people have to deal with this, but I want people to know there is hope. I really just pray that my story helps other women,” says Emily.

Emily has essentially been pain-free since her surgery, though continues to schedule follow-ups with Dr. Vilasagar and is so thankful for her understanding and expertise.

There is hope

Some women may feel that their experiences are common, and some women are told that their symptoms are normal. Other women may believe that these issues are too taboo to discuss.

“Women can feel isolated by their experiences of pelvic pain and suffer in silence due to fear of discussing these private topics. I want to reassure any woman who is suffering that they are not alone, and it is imperative to start an open dialogue about these issues with your primary care doctor or OB/GYN,” says Dr. Vilasagar. “Women should discuss any symptoms that are negatively impacting their quality of life, such as heavy periods, pain with periods or with intercourse, or if they are experiencing pain as well as difficulty becoming pregnant.”

If any of these symptoms sound familiar, women can be referred to a specialist, like Dr. Vilasagar, to have a thorough evaluation, counseling, and discussion of treatment options. For women suffering from chronic pelvic pain, there are often multiple conditions that are contributing to her symptoms. It is important to diagnose and address all of these conditions. There is a multi-disciplinary approach to care of these patients at Atrium Health, including great expertise in Urogynecology, Urology, and Physical Therapy. In collaboration, there can be a stepwise approach to figuring out what is wrong, excluding other causes, and helping to treat the patient’s pain.