“My whole life, as soon as I began menstruating, my periods would cause me to double over in pain,” Megan Latulippe says. She has lived with a condition called endometriosis for years.
Endometriosis is a chronic disease in which endometrium tissue starts growing outside the uterus. The growths, “endometrial implants,” can cause severe pain, inflammation and exacerbate symptoms associated with menstruation. Endometrial implants can grow on the ovaries, fallopian tubes, bowels, bladder and elsewhere in the pelvis. It is a long-term medical condition that has also been linked to pain during sex, fertility struggles, lower back pain and the development of cysts.
“(I experienced) nausea, extremely heavy and long periods, and terrible bloating, but as a teenager I thought that was just normal,” Latulippe says. “Sometimes people would say, ‘Well, maybe you just have more hormones and that’s why.’”
Endometriosis is not often talked about. Like Latulippe, many women go undiagnosed, thinking the pain is “normal.”
The SpeakEndo campaign wants you to know pain is not normal. In fact, 1 in 10 women suffer. SpeakEndo is dedicated to providing women with resources about the condition and encouraging women to be their body’s most vigilant advocate.
The cause of endometriosis is not known, but there may be a genetic component.
“There have been a number of proposed etiologies surrounding its incidence,” says Dr. Kecia Gaither, MD, MPH, FACOG, double board-certified in OB/GYN and maternal fetal medicine, director of perinatal services at NYC Health and Hospitals/Lincoln. These include, “retrograde menstruation — the menstrual blood instead of coming out the uterus through the vagina and outside of the body, instead goes ‘backward,’ up and out through the fallopian tubes and into the pelvic cavity — altered immunology, transplantation of endometrial cells during an operative or invasive procedure, endometrial implants traversing the body via the blood or lymphatic system, abnormal hormonal milieu and genetics.”
You are more likely to have endometriosis if you have a female relative with the condition or have periods lasting longer than seven days. According to Gaither, “Risk factors include age, family history of endometriosis, pregnancy history (delaying pregnancy increases risk) and early onset of menses.”
Signs and symptoms
Symptoms of endometriosis vary from person to person, but most often include:
- Chronic pelvic pain (from defecation, urination or sex)
- Ovarian cysts
- Abnormal menstrual cycles (heavy bleeding or bleeding in between periods)
- Lower back pain
“(I experienced) horrible cramps, extremely long and heavy periods, painful sex, and I would also have this terrible pelvic pain in between periods,” says Latulippe. “It only got worse until I got an IUD.”
Endometriosis can also have an adverse effect on a person’s sex life, but pain during sex isn’t the only issue for those wishing to conceive. In fact, 40% of women who have endometriosis also struggle with infertility and experience obstacles when trying to conceive.
Endometriosis treatment focuses on treating symptoms. Taking birth control, getting an intrauterine device (IUD) inserted, regular exercise and avoiding excessive alcohol and caffeine can reduce risk and pain.
The first line of action in treatment is medication to treat pain and heavy bleeding. Anti-inflammatory non-steroidal pain relievers and hormones (birth control pills and IUDs) are recommended before undergoing a procedure. However, laparoscopic or ablation surgery are options for endometriosis patients with severe symptoms or fertility issues.
For Latulippe, an IUD helped curb symptoms. Even after ablation surgery, an outpatient procedure in which the endometrial lining of the uterus is removed or destroyed, Latulippe’s pain returned once the IUD was removed.
“When I got (my IUD) out, my cramps came back and my period came back again, but not as heavy and not as long,” she says.
As awareness of endometriosis spreads, the hope is that less women will accept the pain and be forced to suffer without knowing the cause.
“Listen to your body and trust yourself,” Latulippe says. “If something doesn’t seem normal, there’s no shame in getting it checked out. If you don’t like what your OB has to say, get a second opinion. You can always go forward.”