March is Endometriosis Awareness Month. A condition that affects approximately 200 million women and girls worldwide and about 1 in 10 females of reproductive age, endometriosis is a gynecological condition where the tissue that lines the inside of the uterus is present and grows in places it shouldn’t, such as the ovaries or fallopian tubes.
Living with endometriosis can be difficult and can have a huge impact on a person’s mental health and their quality of life. The severe menstrual cramps, pain during sex, painful bowel movements, and extreme fatigue that may be experienced by a person with endometriosis can be physically draining. If it is left untreated, it can potentially affect a person’s ability to get pregnant.
Today, many people are aware of the condition, but there needs to be a greater understanding when it comes to diagnosis and treatment options.
“Lack of awareness and assuming the symptoms are normal are two big reasons why it goes undetected for so long,” says Dr. Julie Vu, a board-certified obstetrician and gynecologist at HCA Houston Healthcare West. “Diagnosing and treating patients at an early age are our best tools to preventing the development of chronic pain.”
Awareness is critical for enabling people to seek help and receive care sooner rather than later. Here are a few things you might not have known about endometriosis:
Diagnosing endometriosis may take time.
People often go through years of misdiagnosis and ineffective treatments of their symptoms before they are accurately diagnosed. According to SpeakENDO, it can take anywhere from six to ten years from the onset of symptoms to diagnose endometriosis.
“For a lot of people, their menstrual pain is normalized and is thought of as just a bad period,” says Dr. Vu. “Some people take an NSAID (ibuprofen or naproxen) and their pain goes away, but for others, their pain can’t be relieved and may be accompanied by other symptoms such as bloating, diarrhea or constipation, urinary urgency, or pain with sex.”
Those other symptoms, which overlap with or are similar to other medical conditions, such as irritable bowel syndrome, pelvic inflammatory disease, and urinary conditions, are why this chronic inflammatory disease is so tricky to diagnose.
Laparoscopy, a minimally invasive surgical technique, is used to definitively diagnose endometriosis. It allows your doctor to look for endometriosis lesions inside the abdomen and remove them if possible.
Endometriosis can be treated holistically.
Pain is the most common symptom of endometriosis. Some people feel no pain or only mild pain, while others experience debilitating pain that disrupts their daily life. The good news is lifestyle changes and/or trying new therapies may help you find relief and manage the condition.
“Regular exercise, a diet high in anti-inflammatory foods, decreasing stress, pelvic floor physical therapy, and sleeping well are all things that have been shown to improve pain,” states Dr. Vu.
An anti-inflammatory diet is predominantly plant-based and composed mostly of fruits, vegetables, and legumes. It also emphasizes healthy fats such as fish, nuts, and olive oil. Dairy, gluten, high-fat foods, caffeine, and processed foods with added sugar can possibly trigger or worsen inflammation and should be avoided.
“It can affect so many different organs and systems of the body,” states Dr. Vu. “Often the body has made adaptations to cope with endometriosis pain that may lead to muscle spasms. Pelvic floor physical therapy is key to addressing this type of pain.”
Dr. Vu focuses on treating the entire patient. “I really try to understand the patient’s perspective; not just the symptoms, but also the personal and social impact. Does her pain stop her from working or seeing friends? Has pain or infertility caused stress in her marriage? You can’t treat the disease as just a lesion, you have to treat the entire person and partner with patients in their healthcare to help them regain their quality of life.”
Chronic pelvic pain may lead to signs of central sensitization.
“Central sensitization pain is a process where repeated and prolonged pain can lead to overstimulation of pain receptors, which can amplify the perception of pain,” explains Dr. Vu. “A patient may have surgery to excise as much endometriosis as possible, but after surgery they still have pain that has intensified and is in areas away from the source of the endometriosis lesions.”
Central sensitization not only perpetuates pain, but it can also decrease the threshold of pain making ordinary touch and pressure painful.
“I let my patients know that there may not be something there causing the pain anymore, but we work and goal set to get them back to doing the things they’ve missed out on,” says Dr. Vu. “There are medications that may help with central sensitization pain, but transferring the knowledge of why pain is occurring and focusing on long-term improvements rather than short-term effects can help.”
Surgery can increase the likelihood of getting pregnant.
If you have been diagnosed with endometriosis, don’t assume you need to see a fertility specialist right away when you want to get pregnant.
“If a person with endometriosis is not pregnant after six or twelve months of trying on her own, we may ask her to come in to see if it is contributing to her difficulty getting pregnant,” says Dr. Vu. “Before I determine how to treat them, I ask about their goals because how I treat a patient who is trying to get pregnant may be different from how I treat someone who is simply trying to make their pain go away.”
Treatment for endometriosis usually involves medication or surgery. Dr. Vu is trained in minimally invasive and robotic-assisted surgical techniques that are used to remove endometrial lesions while maintaining fertility if desired.
After surgery, Dr. Vu recommends her patients use birth control, progesterone intra uterine device (IUD), or gonadotropin releasing hormone (GnRH) agonists to prevent their endometriosis from returning. She also warns that endometriosis pain can return within two years of lesion removal for about 20% of people.
Be your own advocate.
Diagnosing endometriosis is difficult, but understanding the disease and its symptoms can help you effectively communicate with your gynecologist.
You know yourself better than your doctor does. Sharing as much information as possible, even if it doesn’t seem relevant, opens the lines of communication and gives your doctor a holistic view of your health and circumstances.
“Not every treatment is right for every patient,” states Dr. Vu. “If you do not have any relief in symptoms after three months of a treatment, speak to your doctor about other options. Also, if the resources needed to treat your pain are not available in one facility, sometimes, we as physicians need to find those resources in other places.”
Dr. Vu hopes raising awareness for endometriosis leads to earlier diagnoses and a better quality of life for people who suffer from this condition.