- Charlotte D.
- Friday, March 22
Endometriosis probably affects someone you know or love, but what exactly is it?
Endometriosis is a condition that affects ten percent of women and girls worldwide. More likely than not, you know someone who has this disease, but you may not be aware that it is incurable, can recur even after surgery, and can be extremely debilitating.
What is endometriosis?
Endometriosis occurs when uterine-like tissue grows outside the uterus. This tissue acts like the tissue of the uterus in that it thickens and bleeds during each menstrual cycle. However, this endometrial tissue does not go away and can spread across the pelvic area and even to other parts of the body.
Endometriosis has been linked to infertility, chronic pain, and extremely heavy or painful periods – among many other symptoms and issues. It also has been linked to higher instances of ovarian cancer.
Can it be prevented or treated?
There is no known cause of endometriosis. There also is no cure.
Initial treatments can target symptoms of endometriosis and include pain management and hormone therapy.
Surgeries to treat endometriosis most often include partial or total hysterectomy, ablation surgery, or excision surgery. However, hysterectomies are now often considered only as a last resort after other forms of treatment have been tested.
Why don’t more people talk about it?
Historically and currently, women’s pain is often minimized. The average woman is not diagnosed with endometriosis until after experiencing symptoms for almost ten years. Sixty-one percent of those women are initially told by their physicians that nothing is wrong with them. This delay in diagnosis and dismissal of female pain can cause those with endometriosis to distrust professionals in the medical field, leading to even further delays in treatment and care.
So why should you care?
One in ten women in the United States has this disease. If you don’t yet know someone with endometriosis, you probably will. It can start as early in women and girls as their first menstrual cycle, and it can last until menopause. Diagnosis, as previously mentioned, can take over a decade from the onset of symptoms, and treatment can be costly and out-of-reach for many people.
What else can you do?
Funding currently remains very limited for endometriosis research, so education and awareness are helpful ways to combat misconceptions and misinformation about this issue.
My endometriosis story
As someone who suffered with endometriosis symptoms for twenty years, I saw multiple specialists and went through dozens of medical tests and surgeries before I was officially diagnosed just a few short years ago. I was infuriated - both as a patient and an information professional - at the lack of knowledge about this disease, which affects so many girls and women and yet seems to be a last priority when it comes to medical research and advancement.
When I initially let my inner circle know about my diagnosis, I was surprised at how many women I know also have had or currently have endometriosis. It felt like a shameful thing that people didn't discuss, and I was both frustrated and saddened that this disease - that affects so many people - isn't better talked about or even known, even in the medical and insurance fields.
There is hope, though, with new medications in development, as well as advancements in surgery techniques and rising awareness of this chronic condition. My hope is that as more people - from friends and family, to famous celebrities - share their stories about living with endometriosis, there will be a growing demand for more research and better treatment options.
Below, you'll find a list of resources about endometriosis, as well as memoirs of those living with it, so that you can feel empowered to learn more and advocate for those living with this disease.