By Jandra Mueller, DPT, MS, PHRC Encinitas
Endometriosis is well known for its significant menstrual pain (dysmenorrhea), and often silent infertility. It has long been thought that this disease is a ‘women’s’ disease or menstrual disease allowing for a long history of hysterectomies and hormone suppression aimed at suppressing menstruation.
Sampson’s theory of retrograde menstruation has been perpetuated since the 1920’s when he named the disease. However, we’ve only really taken a part of his theory and forget that even in the 1920’s he appreciated the complexity of endometriosis and there were likely additional factors that mediated this disease. We have come a long way since Sampson, though he paved the path forward for endometriosis. However, this theory has created significant harm in the endometriosis community. In recent years, we have had numerous advances and a more in depth understanding of this disease, but there is still a long road ahead.
The delay of diagnosis is on average 7-10 years, in part because of this incomplete understanding, which can result in ongoing symptoms or additional symptoms due to side effects of medication. The disease itself is known to be the cause of several symptoms, which we call the clinical manifestations of endo.
Since the discovery of this tissue in the body resembling the endometrium, and the role of estrogen, we have also learned that early presentation (in pre-pubescent individuals) may present in the form of GI symptoms, often leading to the diagnosis of IBS. While the extent of endo doesn’t correlate with symptom presentation, we have learned that endo located in the cul-de-sac region or posterior aspect of the pelvis is related to pain associated with bowel movements known as dyschezia.
Endometriosis, especially deep infiltrating endo on the bladder, has been associated with urinary symptoms such as urgency, frequency, and pain with voiding (dysuria) resulting in the diagnosis (or misdiagnosis) of interstitial cystitis/painful bladder syndrome (IC/PBS). You may have heard endometriosis and IC/PBS called “the evil twins.” However, there are several, more likely, causes of these symptoms including side-effects from birth control pills, the “first-line therapies” for endometriosis.
It’s estimated that 90% of those with endo have pelvic floor dysfunction or tight pelvic floor muscles which can often be the source, or contributing factor, of many of the same symptoms, such as dyspareunia. Endometriosis directly causes deep dyspareunia because of the structural changes, and the innervated lesions around the cervix, while pelvic floor dysfunction can also be a cause of deep dyspareunia, but also superficial dyspareunia, or both. It is important to remember that the first-line therapies such as birth control pills, often called “treatments” by physicians, are one of the leading causes of superficial dyspareunia along with painful pelvic exams and tampon use and urinary symptoms which we previously mentioned.
Basic Explanations of the Clinical Manifestations:
- Dysmenorrhea: This is the medical term for painful menstrual periods, which are often the most noticeable symptom of endometriosis. The pain can range from mild to severe, and it may occur in the lower abdomen, lower back, or pelvis. For some, it is only around or during the menstrual cycle, for others it may be at other points of the cycle, and for others, intermittent or sporadic.
- Dyspareunia: This refers to pain during or after sexual intercourse. Women with endometriosis may experience this pain due to the innervated endometriosis lesions surrounding the cervix. The pain may vary depending on the menstrual cycle and the location of the lesions.
- Dysuria: This is the medical term for painful urination. In cases of endometriosis, it can occur for several reasons including endo on the bladder, side-effects of medications, sensitivities or histamine and mast cell issues, dietary factors, and nervous system changes.
- Dyschezia: This refers to pain associated with bowel movements. If endo has grown on or near the intestines and rectum, it can cause discomfort or pain during bowel movements, especially during the menstrual period.
- Infertility: Endometriosis can lead to fertility problems, and for some it is the only symptom.. There are several proposed theories as to why this happens, including the inflammatory nature of the disease, structural changes to the anatomy and obstruct the fallopian tubes or disrupt the normal movement of eggs and sperm. This is why many women discover they have endometriosis only when they seek treatment for infertility.
While these are the more common clinical manifestations of endo, there are several other symptoms that aren’t often correlated to endo such as chronic fatigue, difficulty breathing, rectal bleeding, and association of certain autoimmune diseases.
Resources:
iCareBetter: Endometriosis Unplugged hosted by Jandra Mueller, DPT, MS
Listen on Apple Podcasts or Spotify
Need to find a specialist? Check out iCarebetter’s ‘Find a Specialist’
Pelvic Pain Explained: Endometriosis + Resource List
Pelvic Pain Explained: Endometriosis
The Truth about the Birth Control Pill
New Perspectives on Endo: Gut-Immune Link & IG Live w/ Dr. Orbuch
Lj Powerhouse and Jandra Mueller of PHRC: IG Live Endometriosis Q&A
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FAQ
What are pelvic floor muscles?
The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.
What is pelvic floor physical therapy?
Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.
What is pudendal neuralgia and how is it treated?
Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.
Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.
What is interstitial cystitis and how is it treated?
Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.
Who is the Pelvic Health and Rehabilitation Team?
The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.
How many years of experience do we have?
Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.
Why PHRC versus anyone else?
PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.
Do we treat men for pelvic floor therapy?
The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.
Do I need pelvic floor therapy forever?
The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.