Endometriosis is a condition in which tissue resembling the lining of the uterus grows outside of your uterus. Endometriosis is a chronic disease causing severe pelvic pain, pain during or after sex, and infertility, which in turn can all significantly affect your ability to enjoy life.
While there is no cure for endometriosis, it can be treated and symptoms can be managed with medicine and in some cases, surgery. Endometriosis may affect more than 11 percent of women between the ages of 15 and 44, according to the Office on Women’s Heath of the U.S. Department of Health and Human Services.
In this Q&A, Tamara Kolev, MD, explains some of the common misconceptions, why patients find their symptoms may be dismissed, and how patients can talk with their doctors about this condition.
What prevents early diagnosis of endometriosis?
Endometriosis is a very complex disease, and its diagnosis is often delayed due to a combination of factors. One of these factors is the presentation of variable, non-specific symptoms.
Tamara Kolev, MD
What does that mean?
Endometriosis can vary in intensity and type. Sometimes symptoms may overlap with gastrointestinal and genitourinary symptoms, which may make it harder to diagnose. We also do not have definitive diagnostic tools. Imaging can be helpful, but the standard diagnosis for endometriosis is histological diagnosis with surgery. Histological diagnosis is made by a pathologist after examining tissue samples after a biopsy or surgical removal of tissue. Often, endometriosis will not appear on an ultrasound, and small endometriosis implants may not even appear on an MRI. Patients may present with pain and receive imaging, but we cannot give them confirmatory diagnosis.
Are patients’ symptoms often dismissed before being correctly diagnosed with endometriosis?
Yes. Patients are dismissed all the time. One of the big issues patients face is societal normalization of menstrual pain, and the misconception that painful periods are normal. When these patients complain of painful periods, they’re told by providers that this is normal. This leads to a lack of awareness in some providers, when it comes to educating patients on what’s normal and what’s normal, not normal.
How long does it typically take before the condition is diagnosed?
Very often, providers and specialists experienced in this area of medicine can make a diagnosis in a matter of weeks or months. But it can take some patients several years or more to receive a proper diagnosis if their providers are not as familiar with endometriosis and its complex presentations.
How does a delay in diagnosis of endometriosis affect a patient’s fertility or overall quality of life?
Endometriosis can be a significant factor in fertility. Some studies have shown that between 30 to 50 percent of women with infertility ultimately receive an endometriosis diagnosis. Endometriosis can cause scar tissue or adhesions and can cause inflammation in the pelvic area. This can make it difficult for eggs to be fertilized or implant. Endometriosis can also affect ovarian reserve, which is the number of healthy, immature eggs in the ovaries. The longer that it takes for women to be diagnosed, the more it affects their fertility options for the future. Endometriosis is an extreme social and emotional burden. Endometriosis symptoms of chronic pelvic pain, painful intercourse, problems with bowel movement and urination can all significantly affect a patient’s ability to enjoy life.
How can early detection of endometriosis be improved?
Promoting health literacy among providers and patients is important. Patients need to be aware of endometriosis symptoms and when to seek help. Health care providers need to aware of symptoms of endometriosis and when it is appropriate to refer a patient to a specialist. There are also new developments in trying to identify more non-invasive testing, certain biomarkers, and improving our imaging technology to properly diagnose endometriosis.
What are some common misconceptions about endometriosis symptoms?
A common misconception is that painful periods are normal. A certain degree of cramping can be common, however severe, debilitating pain that is affecting your daily life could be related to endometriosis. Another misconception is that endometriosis only causes pelvic pain. Other symptoms include:
- Pain with urination
- Diarrhea, constipation, nausea, vomiting
- Pain with defecation
What should I do if my doctor dismisses my symptoms?
It’s very important to speak up and advocate for yourself. Document your symptoms. Keep a pain diary, so that when you go to your doctor, you can show them what you’re experiencing. Don’t be afraid to talk to your doctor. If you feel like your doctor is not listening to you, ask for a referral to a specialist or get a second opinion. There are other providers out there who will listen.