Greater awareness needed about endometriosis

Too many women suffer this painful disorder alone or in silence

Endometriosis is a potentially debilitating disease that affects one in every 10 women. Yet, despite it being so common, people know surprisingly little about it, and it takes an average of seven years to diagnose. Often, the symptoms are dismissed at first as simply bad menstrual cramps. In fact, the pain can be much, much worse.

In this oftentimes excruciating disorder, tissue known as the endometrium that would usually line the inside of a uterus grows outside it, usually around the other pelvic organs, and sometimes beyond them.

With each menstrual cycle, the endometrial-like tissue thickens, breaks down and bleeds. And unlike the endometrium in the uterus, this tissue is not discharged from the body, but becomes trapped. Surrounding tissue can become irritated, and scar tissue and fibrous tissue that develops can cause pain and complications.

March is Endometriosis Awareness Month. Too many women suffer alone or in silence, as I have. So, while it is not an easy thing to publicly share, I decided to break the taboo that often surrounds discussions of gynecological issues and shine a light on this dreadful disorder in hopes of both helping those who suffer from it feel less alone and to make others better able to empathize.

I have suffered from endometriosis for a few years now, but it has got progressively worse in the past three. It has gone from bad to unbearable to downright debilitating in recent months. As the disorder progresses, it can become impossible to do such simple tasks as preparing meals, running errands or even standing. This has been my experience in recent weeks. Working from home has been an enormous blessing.

Nonetheless, the pain and suffering experienced by those with advanced endometriosis are akin to giving birth, only for several days at a time and at regular intervals.

There are several courses of action when treating endometriosis; once the pharmaceutical options are exhausted, surgery can be a possibility. These days, more often than not, that is done laparoscopically. It is either done in the form of an endometriosis excision surgery in which the endometrial-like tissue is carefully removed from the organs it surrounds. The other option for more severe cases is a complete or partial hysterectomy. In somewhat rare cases, even after a hysterectomy, the endometriosis can return and affix itself to other organs such as the bladder, bowels and kidneys.

While surgery is an option I'm considering, I'm also open to exploring all modalities that could potentially offer relief, permanently or even temporarily. I have tried naturopathy. Dietary changes, such as cutting out sugar, bread and pasta, have reduced both the joy I have in my life and my pain enough to warrant serious attention. I am also a huge believer in osteopathy. It has been life-changing for me on more than one occasion. A good osteopath is an absolute godsend.

I am incredibly grateful I had my kids relatively young, for many reasons, one of which being that endometriosis can often impact fertility and the ability of a woman to conceive. In addition, for those wishing to get pregnant, the procedures can be more challenging.

Reading this column may make some squeamish, but I believe it's important to raise awareness about this dreadful condition. While women with endometriosis, like many others with chronic medical issues, may be reticent to talk about them, for fear of seeming vulnerable or sounding like whiners, suffering from endometriosis is not something anyone should have to do alone. There are online support groups on social media, where those who suffer from it can ask questions and get tips and advice.

Women should not be afraid of speaking about endometriosis. It's time to end the taboo.