The Ultimate Guide to Navigating Endometriosis
Disclaimer: In this post the terms ‘female’ and ‘women’ will be used to describe persons assigned female at birth based on their reproductive anatomy and although endometriosis primarily impacts cisgendered women, it is recognized that it is also impacting trans men, non-binary, and other gender fluid individuals. Additionally, the information in this article should not be considered medical advice and should not replace consultation with a medical professional.
Endometriosis is currently estimated to be impacting 10% of reproductive women worldwide.(1) However, this statistic is likely largely underestimated given that there is a lack of understanding about the condition in the medical community, and it takes on average 10 years from the onset of symptoms to receive an official diagnosis.(2) Unfortunately, even once patients are diagnosed they are often left with more questions than answers, and an overwhelming amount of confusion on how to manage their symptoms going forward. As a pelvic floor physical therapist, and someone living with endometriosis, I have first hand seen and experienced the challenge associated with navigating the complexity of endometriosis and its symptoms. The purpose of this post is to briefly summarize identifying possible symptoms of endometriosis, navigating the process of receiving a diagnosis, and outline supportive strategies for management utilizing a multidisciplinary team, including pelvic floor physical therapy.
What Is Endometriosis?
In simple terms, endometriosis is a chronic health condition in which tissue similar to the endometrium of the uterus grows in areas outside the uterus. The cause of this abnormal physiology is currently unknown.(3) Although there are multiple theories, there is a lack of research and therefore not enough evidence to support any single theory. Historically, there has been a widely held belief that “retrograde menstruation,”meaning that menstrual blood flowing backwards through the fallopian tubes into the pelvic cavity, was the cause of endometriosis. However, this theory is unlikely since endometriosis lesions have been found to be present in girls prior to the onset of menstruation, in males (these cases are extremely rare), and in areas outside of the pelvic or abdominal cavity.(4) The reason I mention this is because if you are seeing a provider who approaches the treatment of endometriosis based on this theory of etiology, they may not be up to date on the current research and it is important to consider that their treatment techniques may not be either.
Identifying Symptoms
Common symptoms include(5):
Dysmenorrhea (painful menstruation)
Heavy bleeding during menstruation
Spotting or bleeding between menses
Pain during ovulation
Abdominal or pelvic pain independent from menses
GI dysfunction (ie. IBS-like symptoms, nausea, vomiting, etc.)
Dyspareunia (pain with intercourse)
Dyschezia (pain with bowel movements)
Dysuria (pain with urination)
Low back pain
Pain radiating down the legs
Fatigue
Infertility
Less common symptoms include5:
Chest/ shoulder pain
Trouble breathing or shortness of breath
Abnormalities or discharge from the umbilicus
As you can tell by the length of this list, which is not all inclusive, there is a wide variety in the presentation of endometriosis from person to person. It is important to pay attention to not only the symptoms you may be experiencing but also the pattern they occur in. I recommend symptom tracking to my patients in order to get a clear picture on the pattern of their symptoms, which can also help narrow down whether or not they might be related to endometriosis or another pelvic dysfunction.
Receiving a Diagnosis
Seeking a diagnosis when experiencing symptoms associated with endometriosis can be extremely challenging and oftentimes leads to medical trauma. Unfortunately, it is common for patients to be invalidated by medical providers who may not have the adequate education and therefore may not properly identify the signs/ symptoms warranting referral to the correct specialists. Women with the symptoms of endometriosis often end up requiring visits to multiple physicians before their symptoms are taken seriously (for me it was 4, but for others it can be upwards of 7-10 physicians). Ultimately, if you are questioning whether or not your symptoms are normal or not; remember, pain lasting more than 1-2 days of your cycle, pain that is so severe that you cannot do your daily activities, pain not eased by OTC pain relievers, bleeding so heavily that you become anemic or pass out, and pain with bowel movements or urination are NEVER normal and warrant attention.
If you have signs and symptoms associated with endometriosis, you should consult with a specialist who is trained in minimally invasive gynecological surgery and regularly performs diagnostic/ excisional laparoscopic surgery for endometriosis. General gynecologists are not trained in the proper identification or the highly complex surgical techniques required for effective excisional removal.
Currently the only means of official diagnosis for endometriosis is via pathological biopsy of the abnormal tissue obtained via laparoscopic surgery. The good news is that the gold standard treatment of endometriosis is excision surgery which can (and should) be performed at the same time as diagnosis. To avoid multiple surgeries, or unsuccessful surgeries, both the identification and excision of endometriosis should be performed by a trained surgeon with adequate experience treating endometriosis. There are resources available, such as Nancy’s Nook and iCareBetter.com that include lists of doctors around the world with this training.
Treatment & Ongoing Management
As stated above, the gold standard treatment for endometriosis is surgical excision of the tissue. It is important to understand that excision is a treatment not a cure for endometriosis. Although there is strong clinical evidence that symptoms tend to be relieved following surgical excision, it does not address the underlying pathological process (which is unknown) and therefore it is possible for recurrence. Additional medical treatment options include the use of various hormone based medications such as continuous use combined oral contraceptive pills (OCP), intrauterine devices (IUDs) such as the Mirena, progestins, or Gonadotropin-releasing hormone drugs (GnRH).(6) The main goal of these medications is to suppress menses in order to prevent a monthly bleed and therefore reduce the symptoms associated with endometriosis. It is important to consider the side effects associated with the long term use of these drugs, and a conversation should be had with your medical provider to determine if and which of these medications makes the most sense based on your individual circumstances.
Because endometriosis is a multi-system condition, it should be treated with a multidisciplinary approach. Some of the doctors on your team might include:
Gynecologist
Minimally invasive gynecological surgeon
Gastrointestinal or colorectal specialists
Pain management specialists
Social worker
Psychologist/ Psychiatrist
Pelvic floor physical therapist
Dietician
Primary Care Provider
Pelvic Floor Physical Therapy & Endometriosis
So, how can a pelvic floor physical therapist help patients manage endometriosis? As pelvic floor physical therapists we often see patients with suspected endometriosis while they are in the process of receiving an official diagnosis or on a waitlist for surgery. Because there are limited surgeons who have adequate training and specialization, there can be long wait lists up to and over a year to get a surgical date from some surgeons. In this time, we see patients and help manage their symptoms by utilizing myofascial techniques, nervous system regulation, breathing, stretching, and mobility exercises. In addition to alleviating symptoms like painful intercourse, urinary urgency, low back pain, etc., we can help patients prepare for their abdominal surgeries to set them up for success. Think about the pre-hab an orthopedic surgeon might have a patient do prior to a knee surgery. We do the same thing for people having abdominal surgery for endometriosis! We also see patients following their surgeries to assist in the rehabilitation process and address some of the persisting musculoskeletal dysfunction, constipation, nervous system upregulation, and/ or chronic pain that might contribute to continued symptoms after excision.
Resources & Support
As a healthcare professional specializing in pelvic health with more knowledge about endometriosis than the average person, I have been astonished by how challenging and mentally distressing my journey with endometriosis has been. One of the most important aspects of living with this condition is finding the right support. Sometimes that support comes from family and friends, a health care provider who listens and validates you, or a significant other/ partner. However, some of the most powerful support can come from connecting with others living with the condition. Below is a list of resources available to learn more about endometriosis and various support groups/ communities.
Facebook Communities:
Nancy’s Nook Endometriosis Education
Greater Boston Endo Support Group
endofriendos
MomLife Health and Wellness Pelvic Pain Support Group
Sources Cited
Endometriosis. World Health Organization. March 23, 2023. Accessed March 6, 2024. https://www.who.int/news-room/fact-sheets/detail/endometriosis.
Peterson N. Endometriosis: About . NancysNookEndo. May 17, 2022. Accessed March 6, 2024. https://nancysnookendo.com/about-endometriosis/?doing_wp_cron=1709744960.1753909587860107421875.
Endometriosis: A complex disease. The Center for Endometriosis Care. Accessed March 6, 2024. https://centerforendo.com/endometriosis-understanding-a-complex-disease.
Bridge-Cook P. Why is endometriosis in fetuses important? Hormones Matter. February 13, 2024. Accessed March 6, 2024. https://www.hormonesmatter.com/endometriosis-fetuses-important/#google_vignette.
Do you have endo? Endometriosis Research Center. Accessed March 6, 2024. https://www.endocenter.org/do-you-have-endo/.
Vannuccini S, Clemenza S, Rossi M, Petraglia F. Hormonal treatments for endometriosis: The endocrine background. Reviews in Endocrine and Metabolic Disorders. 2021;23(3):333-355. doi:10.1007/s11154-021-09666-w
Written by Dr. Alyssa Demeule, PT, DPT.
Alyssa is currently accepting new patients at MomLife Health and Wellness.
