Understanding Endometriosis:: Are You 1 in 10?

Understanding Endometriosis:: Are You 1 in 10?In the United States, approximately 1 in 10 girls and women suffer from endometriosis, a medical diagnosis that can cause both severe pelvic pain and infertility – and yet, a majority of people remain completely unaware about this condition. Even worse, women face anywhere from 4-11 years of delay from their symptom onset to diagnosis, and often see multiple doctors before they are diagnosed. Given how incredibly difficult it is to live with chronic pain, these delays in diagnosis and treatment have a big negative impact on quality of life.

With how common endometriosis is, impacting nearly 200 million women worldwide, chances are you will have a friend, a family member, maybe even a sister or daughter who struggles with this diagnosis. So, as an OB/GYN and fertility specialist, I hope this March, Endometriosis Awareness Month, lots of folks will take a few minutes to learn a little bit about the diagnosis. Here are my top 5 takeaways::

What Endometriosis Is

Endometriosis is when the type of tissue that normally grows on the inside of the uterus {the “endometrium”} grows in other parts of the body, with symptoms relating to where the endometriosis grows. Most commonly, this is in the form of cysts in the ovaries {which can cause pain during one’s period or during sex}, or along the Fallopian tubes {which can block the tubes and cause infertility}, intestines or bladder {which can cause, respectively, painful or bloody bowel movements or urination}.  In rarer instances, endometriosis can grow in more remote parts of the body, like the diaphragm or chest – where it can cause a cyclic bloody cough! 

Diagnosis

Often, a woman’s history is enough to make a presumed clinical diagnosis. Endometriosis is definitely to be suspected even in girls that have painful enough periods that force them to stay home from school. Among women, I commonly hear from patients who thought they had low pain tolerance or that their pain was just “how periods are”, until they really spoke with a friend, family member or doctor and realized how out of the norm their symptoms were! If you are unsure of whether your symptoms are normal, please start exploring to see whether you might be at risk {here’s a good place to start}. Ultimately, the gold standard in diagnosis is surgical confirmation – typically done by laparoscopy, a minimally-invasive approach where we make small incisions in the lower abdomen that allow us to use a camera and instruments to perform surgery. However, this doesn’t mean that surgery is always indicated {more on this below}.

Treatment Basics

In short, there are medical and surgical options. Medically, birth control pills taken continuously {skipping the placebo pill week and only taking active pills} helps keep our reproductive hormones under control and preventing the endometriosis from worsening. If this approach doesn’t work, stronger hormonal treatments can suppress the reproductive system further. If medical treatments do not suffice, laparoscopic surgery may help. Surgery is definitely not a guarantee of improved symptoms, but can make a big difference. I highly recommend those looking to pursue surgery to find an expert in endometriosis surgery, who will be able to do the most extensive removal of any endometriosis they see. If you’ve been diagnosed with endometriosis, but doesn’t have infertility or symptoms severe enough to warrant  intervention, surgery may not be necessary at this time.

When to See a Specialist

Though many physicians can handle medical management of endometriosis, if you need surgery, if you have ovarian cysts or if you are concerned about your fertility, those are all times to seek consultation with an endometriosis specialist. For surgical concerns, that might be a fertility specialist or a minimally-invasive gynecologic surgeon, or an OB/GYN who operates regularly and handles many surgical cases of endometriosis. Ovarian endometriosis, and ovarian surgery, can reduce the amount of normal ovarian tissue and the number of healthy eggs available, and so women diagnosed with severe endometriosis or cysts should consider meeting with a fertility specialist if they would like to have children in the future. In some cases, egg or embryo freezing might make sense to prevent infertility. 

How You Can Help

Even if you don’t have endometriosis, you can support women’s health by speaking up about this condition. That could mean simply mentioning it to any girl or woman in your life who might describe some of the symptoms, helping them find good care, or supporting some or all of the following organizations:: 

    • Endometriosis Foundation of America:: Raising awareness, offering educational and advocacy resources, funding research, and facilitating surgical training
    • Endometriosis Association:: Providing education and support to women with endometriosis, and funding efforts to cure and prevent endometriosis
    • EndoWhat:: Providing educational toolkits to school nurses so they can help get girls a timely diagnosis
    • EndoMarch:: Raising endometriosis awareness worldwide through marches and other local activity

When it comes to women’s health, more and more topics are losing any associated taboo {long overdue!!}, and finally being discussed openly. For us as women, and moms, this means we now have the opportunity to share our experiences, especially with the young women in our lives, and help those struggling with conditions like endometriosis find out earlier in life that their symptoms are real and that they deserve high-quality evaluation and treatment. This Endometriosis Awareness Month, if someone tells you about their symptoms, fertility journey or diagnosis, be prepared with the know-how on how you can help!


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