Women speak out about living with endometriosis, the pain and suffering in silence

Looking great on the outside and suffering on the inside is something I know well.

I have endometriosis and I understand the pervasive, debilitating pain that comes with the condition. Pain that no pain reliever or heating pad can fully alleviate. Yet, one in 10 women suffer from endometriosis and it can take an average of seven years to diagnose.

Too many women suffer alone or in silence, as I have. And it’s time to break the taboo that often prevents discussion of gynecological issues.

“Advocate for yourself, don’t take no for an answer, keep pushing, getting multiple people to see you. Keep saying that I’m not supposed to be in this kind of pain, this is not normal,” says Montrealer Trine Mikkelsen, who suffers from endometriosis. “We look great on the outside and we’re in so much pain on the inside. There’s still a lot of taboo around it.”

March is Endometriosis Awareness Month.

Endometriosis is an inflammatory condition where endometrial tissue (tissue similar to the lining of the uterus) grows outside of the uterus. It frequently presents with the symptom of pain including dysmenorrhea (painful periods), dyspareunia (pain during sexual intercourse), and chronic pelvic or abdominal pain.

Endometriosis most commonly involves the ovaries, fallopian tubes and the tissue lining your pelvis.

“There is no cure at the moment, but the treatment basically is by suppressing the hormones, the estrogen from the ovaries and painkillers of course. But there are other medications that we can give such as progesterone,” said Dr. Togas Tulandi, chief, department of Obstetrics and Gynecology at the MUHC and a pioneer in advanced endoscopic operations.

“If we cannot treat them medically, if the pain is so persistent and debilitative, then surgery might be the answer. The other condition that might need surgery is if there is a big ovarian cyst or mass,” said Dr. Tulandi.

“I’ve worked with women for 20 years around this topic and I saw that there is a bit of a personality trait when it comes to endometriosis,” added Mikkelsen. “We’re usually very high performing, we’re perfectionists, we like pushing through. We are great creators, we want to create a whole bunch of things at the same time. And we’re people pleasers. We don’t have an easy time saying no and stepping back and taking care of ourselves.”

I have suffered from endometriosis for a few years now, but it has gotten progressively worse in the past three. It’s gone from bad to unbearable, to downright debilitating, in recent months.

As the disorder progresses, it can become impossible to do simple tasks like preparing meals, running errands or even standing. This has been my experience in recent weeks.

“Surgery could be done just to remove the endometriosis in clients or cysts and we can leave the ovaries, especially in young females who want to conceive. However, if a patient is close to menopause, we could remove the ovaries, preferably not both because removing both could lead to menopause,” said Tulandi.

“The thing with endometriosis is that it is very, very lonely,” added Mikkelsen. “You’re in a lot of pain and under normal circumstances, when you’re in a lot of pain, people are rallying around you, you don’t have to advocate for the fact that this is real but because it’s linked to periods and the whole idea that periods hurt, and it’s like, ‘take an Advil and keep going.’

“Having period pain is one thing. Having endometriosis is a whole other ballgame. It is not considered your typical period pain. It is at the level of a heart attack, the kind of pain you’re in.”