It’s a sad truth that endometriosis doesn’t get talked about nearly as much as it should. This often painful disorder – in which tissue similar to the uterine lining grows outside the uterus, causing bleeding, lesions, and other issues – is not particularly rare. As a matter of fact, it affects an estimated one in ten women in the United States. However, endo is often under-discussed, misunderstood, and misdiagnosed, leaving many patients with inadequate care that fails to alleviate their symptoms.
Dr. Allyson Shrikhande and Dr. Lyndsey Harper are well-versed in identifying and treating this illness. Dr. Shrikhande is a board-certified physiatrist and the chief medical officer of Pelvic Rehabilitation Medicine, a dedicated pelvic pain practice with locations in over a dozen cities nationwide. Dr. Harper is a board-certified Ob/Gyn who is also the founder and CEO of Rosy, a new app dedicated to providing community and educational resources that help women overcome sexual health issues and have better sex overall. Here is what they had to say about the key challenges and takeaways from their experience helping patients who have endometriosis.
- The path to diagnosing endometriosis may not always be simple and can be different for every woman. What are some indicators you look for when you suspect a patient may have endometriosis?
Dr. Harper: If a patient has a history of painful periods, I would automatically suspect endometriosis. In some other cases, there can be histories that involve painful sex, infertility, and bowel or bladder symptoms during menses. Any of these symptoms can be due to endometriosis, and if a patient reports more than one of these, the suspicion is even higher.
- Is there any specific kind of testing you administer or refer out to reach a diagnosis?
Dr. Harper: Diagnosis of endometriosis is extremely challenging and that is a big part of the reason that it takes many women so long to get diagnosed. In some cases, endometriosis can cause cysts on the ovaries that can be seen by ultrasound, but in the vast majority of cases, a woman has to undergo laparoscopic surgery to investigate whether or not endometriosis is the cause of her symptoms. The fact that we do not yet have a reliable non-surgical test is a major frustration for many physicians and their patients.
- When would you say is the right time to bring in a physiatrist/referring provider to help treat this patient?
Dr. Harper: If a patient has persistent pain due to endometriosis (and many other causes) that is not well controlled with medication or after surgery, I would definitely start involving other providers in the plan of care. Whenever pain is involved, we want to address it in as many ways as possible in order to avoid all of the negative effects that pain can have on our body and on our mental health.
- Is there any kind of supplemental testing you administer/perform that could be different from an OB/GYN to help solidify a diagnosis?
Dr. Shrikhande: Pelvic floor spasm symptoms often overlap with endometriosis symptoms – these include pain with/post intercourse, constipation, abdominal bloating, abdominal pain, and urinary urgency, frequency, or pain with urination. Therefore the best tool that we have to diagnose endometriosis is a thoughtful history looking for specific details such as onset of pain, family history, autoimmune disease, and infertility.
- As a physiatrist, what is your treatment protocol when treating a patient with endometriosis?
Dr. Shrikhande: As endometriosis is a systemic inflammatory disease process, we take a holistic approach. Endometriosis often upregulates the nervous system and causes chronic pelvic floor muscle guarding. Therefore, we use modalities which address the nerve inflammation and muscle spasms. These often include pelvic floor physical therapy, muscle relaxer suppositories, mindfulness/meditation, and a series of external ultrasound guided peripheral nerve blocks with trigger point injections to the pelvic floor.
Sometimes, depending on the severity and chronicity of the patient, we will use an oral medication to treat the central nervous system. Together, this multimodal outpatient treatment protocol works to reset and retrain the nerves and the muscles to a more calm state with less inflammation and more blood flow. We also focus on nutrition, optimizing bladder and bowel function, as well as exercise and sleep.
- How do you both consistently work together on the path to helping the patient find relief?
Dr. Harper: In my experience, communication is key. This is important between the patient and all providers taking care of her. One of us may have one understanding of the issue and processes involved, while the others of us can add our own experience and expertise. When there is open communication among all involved, the best outcomes are achieved for the patient.
Dr. Shrikhande: Physiatry and gynecology use a team approach to treating Endometriosis. Typically a GYN is in charge of the initial work up for a patient’s pelvic pain symptoms: imaging, cultures, blood work, etc. A GYN is an expert in the female organs and is essential to the process, particularly for the surgical excision of endometriosis. A GYN is also extremely knowledgeable about the hormonal aspect of endometriosis and can recommend hormonal treatments.
A pelvic physiatrist is an expert on diagnosing and treating nerve and muscle pain and inflammation that comes with endometriosis. The nerve and muscle dysfunction are directly related to a patient’s symptoms of pelvic pain, as healthy pelvic nerves and muscles are required to have pain-free intercourse and healthy bladder and bowel function.
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