Endometriosis: Giving a Voice to a Silent Disease

My periods are so painful. I can’t go to work when I have my period. I have to miss school when I have my period. It’s debilitating. I feel awful.

These are the voices of women with endometriosis, a disease that affects the lives of millions of women. The incidence is thought to be as high as 15% in the general population and 70% among women with pelvic pain and infertility.

Despite its prevalence, endometriosis is often underdiagnosed or misdiagnosed. The symptoms frequently mimic other medical conditions, and it takes an average of six to 10 years to identify the source of the problem.

Endometriosis is a hormone-dependent condition in which endometrial tissue, similar to the tissue lining your uterus or womb, forms outside the uterine cavity. When a woman has her period, this tissue is thought to also shed, leading to scar tissue in the pelvis and abdomen, thus causing chronic pain, infertility and bowel and bladder dysfunction.

[MORE: What Is Endometriosis?]

Sex is painful. It hurts when I have a bowel movement, and sometimes it’s bloody. I’ve been trying for two years to get pregnant and have been unsuccessful.

Severe pain is never normal.

While it’s a common disease, many women continue to suffer silently, without a diagnosis, because they’re under the impression that their symptoms are normal. If a woman experiences painful periods (dysmenorrhea), heavy periods (menorrhagia), painful intercourse (dyspareunia), painful bowel movements (tenesmus), difficulty with bowel movements (dyschezia) or infertility, she may be suffering from endometriosis.

[See: 16 Health Screenings All Women Need.]

Why me? I feel alone. I wish there was something that could help me.

You’re not alone. And while the causes of endometriosis are still unclear and there’s no one-and-done cure, there are promising treatments to reduce the pain, mitigate the symptoms and manage the disease.

While historically the diagnosis of endometriosis has been via laparoscopy, we often use a medical history and clinical exams to commonly diagnose and initiate treatment.

Ultimately, the goals of treatment are to control pain, suppress the ovaries (thereby suppressing the endometrial-like tissue) and prevent the disease from progressing. Typical non-surgical interventions include:

1. Nonsteroidal Anti-Inflammatory Drugs: As the first line of treatment for management of mild to moderate pain, we generally recommend over-the-counter nonsteroidal anti-inflammatory drugs, such as Advil or Motrin.

2. Hormonal Therapy: Oral contraceptive pills, aka birth control pills, both combined or progesterone-only and/or progesterone (levonorgestrel)-emitting Intra-Uterine Devices, can be used to control endometriosis and prevent it from progressing.

3. Transcutaneous Electrical Nerve Stimulation: By using a Food and Drug Administration-approved TENS unit such as Ovira, patients can control pelvic pain, improve pain associated with intercourse and improve their quality of life.

4. Gonadotropin Receptor Hormone (GnRH) Agonists and Antagonists: These types of interventions come in the form of injections, nasal sprays or pills. Typically, these will suppress the ovaries, thereby controlling the progression of endometriosis. Many of our patients have found success with the oral prescription drug, Elagolix (Orlissa), an antagonist, which was developed specifically to treat moderate to severe pain from endometriosis and approved by the FDA. It has also been found to be beneficial in the treatment of painful intercourse.

[See: How to Prevent Pelvic Floor Problems.]

I’ve tried these interventions, but I’m still having pain. I just want it to stop.

When non-surgical interventions are not effective in treating the symptoms of endometriosis, laparoscopic surgery is commonly recommended to diagnose and actually remove the endometrial tissues. While our goal is to avoid surgery, it’s often the best way to provide relief and improve fertility for those looking to start or grow their family.

Public sharing of an endometriosis diagnosis by celebrities such as Mandy Moore and Amy Schumer may make women feel connected, comforted and no longer alone. Their experiences also give a name to the pain and a voice to this silent disease.

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Endometriosis: Giving a Voice to a Silent Disease originally appeared on usnews.com

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