Pelvic Pain: Why a “Diagnosis” isn’t the Key to Recovery
When symptoms of pelvic pain strike, it’s natural to want to know: What’s my diagnosis?
Every patient just beginning his/her journey to recovery from pelvic pain grapples with this question. But more often than not the quest to get that diagnosis leads to frustration and disappointment. On top of that, it can actually cause roadblocks to getting on the right treatment path.
For instance, so often patients come into our clinics either terrified of a “diagnosis” they’ve been labeled with (or given themselves) or so married to one diagnosis or another that it’s hard for them to think outside of that diagnosis box when it comes to putting together a treatment plan.
For the past few months we’ve been working to write a book about pelvic pain titled, Pelvic Pain Explained, and this is a topic that’s been on our minds a lot this week as we’ve worked to explain this concept in the book. In this blog post, I’m going to share the explanation that we composed for the book because I think it’s also a very blog-worthy topic!
Let me start the post by saying that I completely understand the desire for written in stone diagnosis. Not only does it validate a patient’s pain, especially if he/she has run up against a provider who’s dismissed his/her complaints or intimated that it’s “all in your head.”
But the fact is the treatment of pelvic pain widely diverges from the treatment of most other medical conditions.
Let me explain. Typically, when you have a medical problem, you go to the doctor, who perhaps runs a few tests, and then from there you get a diagnosis and treatment, usually some sort of medication.
Well, the diagnosis and treatment of pelvic pain simply does not work this way. When it comes to pelvic pain, a “diagnosis” does not dictate treatment.
For its part, pelvic pain ends up being a diagnosis of exclusion whereby other pathologies, such as an infection, must first be ruled out, and when symptoms persist, the patient is then given a descriptor diagnoses, such as “vulvodynia,” which simply means “pain in the vulva.” Indeed, oftentimes, the “diagnosis” simply is “pelvic pain.”
A second example is “interstitial cystitis/painful bladder syndrome” or “pudendal neuralgia,” meaning pain in the bladder or the pudendal nerve distribution respectively .
When a patient is given any one of these descriptor diagnoses they are often confused and frustrated mainly because there are no specific, one-size-fits-all treatment protocols for any one of them.
Understanding how a pelvic pain syndrome, whether it’s been tagged as “vulvodynia” or “pudendal neuralgia” is treated can restore hope.
So if a diagnosis does not dictate treatment, what does?
What does dictate treatment when it comes to pelvic pain are the specific neurological, musculoskeletal, and psychological impairments that are uncovered and determined to be involved in a patient’s symptoms.
As already mentioned, pelvic pain is rarely caused by just one issue, more often than not, it’s caused by a combination of factors, including impairments of the pelvic floor muscles, the central and peripheral nervous systems, and even behavioral issues, like poor posture or “holding in” one’s urine.
Therefore, a successful treatment approach involves identifying and treating all of the different impairments contributing to a patient’s symptoms.
These impairments might be found in the muscles, joints, nerves or connective tissue of the pelvic floor and/or the pelvic organs and the derma of the genitals. So we’re not just talking about that hammock of 14 muscles described above.
Therefore, the best course of action is to identify all of the impairments that contribute to a patient’s pelvic pain, and then treat each and every one of them individually while collectively treating the patient as a whole.
Is this an issue that you’ve faced in your recovery from pelvic pain? If so, please share your experiences in the comment section below.
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All my best,
Stephanie
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 and occupational therapy?
Pelvic floor physical and occupational therapy is a specialized area of physical and occupational therapy. Currently, physical and occupational therapistss 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 and occupational therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical and occupational therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical and occupational therapists will take a detailed history. Following the history the physical and occupational therapists will leave the room to allow the patient to change and drape themselves. The physical and occupational therapists 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 and occupational therapists 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 and occupational therapists 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 and occupational therapists 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 and occupational therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical and occupational therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical and occupational 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 and occupational therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical and occupational 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 and occupational therapistss who work at PHRC have undergone more training than the majority of pelvic floor physical and occupational therapistss 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 and occupational therapistss 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 and occupational 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.