Living with endometriosis

March is Endometriosis Awareness Month. We take an inside look at this debilitating disease and two brave women share their stories.

When Micaela first heard about endometriosis at the age of 18, the symptoms seemed all too familiar. “I had incredibly painful periods,” she says. “I was put on birth control at 14 to help the pain because I’d been having to leave school for a day or two every month. At one point, my teacher thought I had appendicitis because she found it hard to believe anyone could be in so much pain from having their period. My periods always lasted almost two weeks and were very heavy.”

But despite her gut feeling, it took another 14 years for Micaela to be diagnosed. “I had a few different doctors give me different opinions as to whether or not they thought I had it, but I was only formally diagnosed by a fertility specialist after completing a questionnaire about endo in 2016,” she says. “I’ve also suffered from IBS [irritable bowel syndrome] and digestive issues since I was a teenager, as well as recurring kidney problems, and I’ve recently been told that all these symptoms can be attributed to endo.”

Because Micaela’s fertility was also affected, she underwent IVF to conceive. She had a welcome break from her endometriosis symptoms while she was pregnant, but they came back as soon as her son was born six months ago. “I still have digestive issues so I’ve drastically changed my diet, which has helped a lot. And I take painkillers to help with the pain during my period.”

What is endometriosis anyway?

Affecting one in 10 women in the U.S. and worldwide, endometriosis occurs when the tissue that lines the uterus (endometrium) grows outside the uterus. While it can occur in a number of areas, it’s most commonly found in the uterus, fallopian tubes, ovaries and bowel.

Symptoms include:

  • Very painful periods
  • Long periods and heavy menstrual flow
  • Ovulation pain
  • Pelvic pain
  • Pain during sex
  • Bowel and bladder disorders
  • Reduced fertility or infertility
  • Nausea and fatigue
  • Premenstrual syndrome (PMS)

How is it diagnosed and treated?

Sadly, it takes an average of 10 years to receive an accurate diagnosis of endometriosis in the United States due to a lack of information in the medical community and among the public. Sufferers are often misdiagnosed for years and fail to receive timely and adequate treatment.

Laparoscopy is the most common and effective way to diagnose endometriosis. During this surgical procedure, a small camera is used to examine the pelvic cavity and a biopsy of tissue may be taken. Ultrasounds, MRIs and CT scans may also be used prior to surgery to detect the possible presence of endometriosis, but these procedures can’t confirm the diagnosis. A colonoscopy may be necessary if endometriosis is believed to be affecting the bowel.

For mild cases of endometriosis, it may be possible to manage symptoms with non-steroidal anti-inflammatory drugs (NSAIDs), oral contraceptives, hormone therapy, dietary changes or alternative therapies such as acupuncture.

In more severe cases, surgery may be necessary. The most common procedure is laparoscopic surgery during which adhesions are cut out (excised) or burnt. Laparotomy is a major abdominal surgery that may be necessary in more advanced cases. And if endometriosis is significantly hindering your quality of life, you may need to consider a hysterectomy (removal of the uterus) – although this doesn’t guarantee that the pain will go away completely. Your doctor will be able to guide you toward the best treatment option for you.

Three miracle babies despite the odds

Unlike Micaela, Tara never would have suspected she had endometriosis. She’d never experienced any of the debilitating symptoms associated with the disease, so she was shocked to find out she had it after undergoing fertility tests when she and her husband had trouble conceiving.

“I had a laparoscopy and that’s when I was diagnosed,” she says. “Then I had another procedure to remove it all [the endometrial lesions], and an ovarian suspension [where the ovaries are ‘suspended’ to the abdominal wall] to prevent any adhesions or scar tissue from forming. After the ovarian suspension, we went through three rounds of IUI [intrauterine insemination] to get pregnant and we had a daughter. Then, we had five rounds of IUI and fell pregnant with twin boys. We’re so blessed to have our kids – we feel lucky every day.”

But Tara’s journey with endometriosis isn’t over yet. Despite her lack of symptoms before having kids, she’s been experiencing very heavy and painful periods since giving birth to her twins. “I’m waiting to have an ultrasound to check where things are at given the amount of pain I’m experiencing,” she says. “I have a very high pain threshold, so I gather it’s quite bad.”

She has one piece of advice for women who suspect they might have endometriosis: see your doctor without delay. “Especially if it’s causing fertility issues – get it checked and don’t wait. If you need to have endometriosis treatment and then fertility treatment, it could take you a while to conceive. But remember to keep the faith because it’s not the end.”

How to get involved

Join the Worldwide Endometriosis March in one of many locations around the U.S. and the world on March 30, 2019. To find out where there’s a march near you, click here. Follow updates on Twitter and show your support by using the hashtag #endometriosis and#EndometriosisAwarenessMonth. For more endo events and ways to get involved, visit Endometriosis.org.