A Doctor's Perspective on Endometriosis

Having a good doctor is so important, especially when coping with a chronic illness such as endometriosis. I have been under the care of Dr. Karen Leedom* for the past few years, and she has been instrumental in helping me manage my endometriosis symptoms. I recently interviewed Dr. Leedom about endometriosis because I thought her insight would be helpful to you all. Dr. Leedom is not the physician who diagnosed or performed any of my surgeries for endometriosis (that was quite some time ago), but she has been essential in treating my endometriosis symptoms pre- and post-pregnancy/birth. She is a compassionate doctor who takes her time listening to patients and explaining everything with an appropriate level of detail. I asked her to share a little bit about what she wishes women knew more about, and how women can receive better care.

What should more women know about endometriosis?

Overall, women lack knowledge about endometriosis, which can serve as a barrier to seeking care and getting an early diagnosis. Dr. Leedom wishes women knew more about how common it is (5-10% of women), but acknowledges that it is difficult to obtain accurate estimates because surgery is needed to confirm a diagnosis. It is also important to understand that endometriosis is a chronic condition that will need to be managed overtime. In other words, its not just going to go away by taking a pill. Knowing about the prevalence and long-term nature of endometriosis can help women from feeling alone. Perhaps this can make women more likely to reach out to a health care provider when experiencing symptoms.

What should young women (especially teens) do if they are experiencing endometriosis symptoms?

Encouraging young women to go see a doctor when they are experiencing symptoms of endometriosis is a top priority. Prior to 2012, it was recommended that women go see a gynecologist for a pap smear (cervical cancer screening) when they became sexually active or when they turned 18, which ever came first. This provided an opportunity for women to discuss other gynecological health issues earlier in life. However, in 2012, the U.S. Preventive Services Task Force changed the recommendations for cervical cancer screening to begin at age 21 instead (see updated recommendations here). This change was made in order to prevent unnecessary procedures for transient infections. However, women may go see a gynecologist later in life, well after endometriosis symptoms begin.

Dr. Leedom pointed out that its “hard for someone to know what’s a normal amount of discomfort to have with your cycle and how to compare it to their friends". So, women would benefit from talking to a doctor about their menstrual cycle and symptoms earlier in life, despite not needing to come for cervical cancer screening. Doctors can help women determine whether their experiences are typical, or different than what would be expected with a normal cycle.

Why do you think endometriosis often goes un-diagnosed? Why do delays in diagnosis occur?

One reason diagnosis is often delayed is because there are other illnesses that have similar symptoms (e.g., dysmenorrhea, or painful periods with no known cause). Symptoms may also present differently in different women, making it difficult to arrive at the correct diagnosis right away. Dr. Leedom mentioned that another barrier is that surgery is needed to officially diagnose endometriosis. The lesions cannot be identified with an ultrasound, or CT scan. Dr. Leedom pointed out that, “you don’t want to jump to operating on a young woman or any woman right away”, and so the doctor may first see if the pain and symptoms respond to treatment before going to the operating room. In other words, sometimes endometriosis is suspected and treated, but the official diagnosis isn’t given without surgery.

As a healthcare provider, what are the most difficult things about diagnosing, treating, and managing a patients' endometriosis?

One difficulty with diagnosis is the variety of symptoms that patients present with and report. Dr. Leedom said, “one of the tricky parts is that the amount of pain or symptoms that women have don’t really seem to correlate with what is seen on the inside (during surgery) or the amount of scarring going on.” The symptoms may not always go together or be the typical endometriosis symptoms. Further, it can be difficult to convince someone to take medicine when they are not experiencing symptoms, but endometriosis can worsen without treatment.

If a woman thinks she may have endometriosis, what should she do? How should she start the conversation with her doctor?

Dr. Leedom said, “the biggest thing is probably keeping a diary”. Doctors will ask patients a lot of questions to try and understand more about their pain, in order to plan diagnosis and treatment. If patients can be prepared for this conversation, they can get better care. The kinds of questions doctors may ask about include timing of the pain, location, what does it feel like (sharp/dull), any correlation with diet, timing of bowel movements, etc. Keeping a log or diary can help get an earlier diagnosis. Women can add this kind of information to their period tracker diary, or use various apps (discussed here).

In your experience, what do you typically see in patients who may have or do have endometriosis? Beyond the "typical" symptoms, what are the less common symptoms?

Dr. Leedom said, “The classic thing you hear is that they have pain that seems to be worsening just prior to the period and during the period, but it's not just that”. Women also may experience pain throughout the month, but worsening before/during the period. Another common symptom women report is pain during intercourse. Less common symptoms include severe pain with bowel movements or voiding. I followed up by asking Dr. Leedom whether she discusses infertility with patients who have been diagnosed with (or are suspected to have) endometriosis. She said that she’s more likely to bring this up with adolescents in trying to communicate the importance of managing the condition early. Infertility is less of a concern for women with endometriosis who receive proper treatment and hormonal suppression earlier. Another reason why early diagnosis and treatment can be helpful.

Dr. Leedom ended our discussion on a positive note by pointing out that researchers and doctors are always looking for new treatments and there are so many more options today than there were years ago.

*Dr. Karen Leedom practices general obstetrics and gynecology at Lawrence OB/Gyn in Central New Jersey. She has been practicing medicine for 14 years. She completed her residency training in the U.S. Army for a few years before returning to the New Jersey area to be close to family.