Pelvic Pain: Why a “Diagnosis” isn’t the Key to Recovery

By Lorraine Faehndrich

Today I am excited to share a guest post with you from Stephanie Prendergast, MPT, co-founder of the Pelvic Health and Rehabilitation Center, and co-author of the newly released book, Pelvic Pain Explained.  (I just received my copy today!)  Stephanie will be a guest expert in my upcoming Healing Female Pain program.  Today she has some great information to share with us about why a diagnosis is not the key to recovering from pelvic pain.  In my opinion this understanding is so important because it can help shift your focus and energy off of your diagnosis, or finding the correct one, and get it onto identifying and addressing the root causes of your symptoms – which is what will ultimately relieve them!  Here’s what Stephanie has to say:

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.

Stephanie PrendergastStephanie A. Prendergast, MPT is the co-founder of the Pelvic Health and Rehabilitation Center, which has locations in San Francisco, Berkeley, Los Gatos, Los Angeles, and Boston. She currently treats patients in the Los Angeles location.

Stephanie began serving on the International Pelvic Pain Society’s Board of Directors in 2002 and in 2013 was the first physical therapist to serve as President. As an acknowledged leader in the field, she was invited to become on of the founding Board members of the Society for Pudendal Neuralgia in 2005 and subsequently co-developed and teaches “De-mystifying Pudendal Neuralgia,” a continuing education course attended by doctors, physical therapists, and other allied health professionals around the world.

Stephanie served on the program committee for the World Congress on Abdominal and Pelvic Pain in 2013 and 2015 and is also Co-chair of the program committee for 2017. She is internationally recognized authority in the field of pelvic floor dysfunction, lectures regularly, and has numerous publications in medical textbooks, journals, and magazines. She co-authored the book Pelvic Pain Explained, released in January of 2016.

 

10 Comments

  1. Sarah

    Hi Lorraine,

    I’m just a little confused as to what message we are meant to take away from this article by Stephanie. She says the treatment will depend on the neurological, musculoskeletal and psychological ‘impairments’ found to be involved in a condition yet many people who recover from IC or PN for example, using only mindbody tools, had been diagnosed by their doctors or PT as having neurological and musculoskeletal issues (and weren’t told ‘we can’t find anything wrong’ or ‘it’s all in your head’). If Stephanie’s advice was followed, wouldn’t these people have needed PT and other medical treatments to recover, which they didn’t? (And many of them tried these methods unsuccessfully.) I suppose I am a little surprised to find an article by a PT here as her suggestions seem somewhat opposed to a mindbody approach to healing or am I misunderstanding the message of the article? Would love to hear your thoughts as I find your suggestions so helpful.

    With thanks,
    Sarah

    Reply
    • Lorraine

      Hi Sarah,

      Thanks so much for reading and for your comment/question. These are great points! I’m glad you brought them up because it gives me a chance to clarify some places where my experience and recommendations may differ slightly from other mind body practitioners – which in part accounts for the length of this reply!

      You are absolutely correct that many people have relieved pelvic pain (including myself and many of the women I work with), and including people with identified musculoskeletal, neurological, or psychological ‘impairments’; using a mind body approach alone, without treating the physical issues with PT or in any other way. When pelvic pain (or any pain) has a mind body cause and is the result of suppressed emotion, established neural pathways, and/or an over sensitized nervous system, my experience is also that it is not necessary to treat any identified physical issues in order to relieve the pain! At the same time, some women find that a combination of addressing the identified physical issues through PT, while using a mind body approach can be a very effective combination. In part this is due to the fact that the physical, mental, and emotional are connected! And in part it is because everyone’s situation is different, and there are many different underlying factors/causes….which is one of the points Stephanie makes in her post.

      From my perspective, we are mind, body, emotion, soul beings and supporting any of those parts of us (including the body physically – with PT, or healthy food choices for example) can support the others. The trick when using a mind body approach is learning how to do that while at the same time staying grounded in the knowledge that the root cause (or a component of it) is mind body (emotional/psychological, nerve pathways/neurological, and even spiritual in my opinion). We can think about our health, and lead our treatment from that bigger perspective, and at the same time incorporate support from experts, like Stephanie, who specialize (and have a wealth of knowledge) in treating the physical components of pelvic pain. This is particularly true when you are tuned into your body and it’s guidance when making decisions about what treatments are right for you.

      What I appreciate most about Stephanie’s post, and why I wanted to share it, is her cutting edge point, that even from a medical perspective, it is not necessary or even desirable to find or identify with a diagnosis to treat effectively – and recover. That treatment is dictated by underlying cause and that there can be a wide range of underlying causes! I think that is such a helpful concept especially when the cause, or a component of it, is mind body (ie. psychological and neurological). It is not necessary to go from doctor to doctor, or have test after test to identify a “descriptor diagnosis” to recover. It’s more effective to turn your attention to the underlying causes (mind body included!) and address those.

      Thanks again for your comments Sarah! I hope this helps explain my thinking. Please feel free to respond or ask for more clarification. Stephanie may have something to add too.

      Warmly,
      Lorraine

      Reply
    • Stephanie Prendergast

      Hi Sarah,

      Thank-you for your comments. The points you bring up are important and many people are wondering the same thing you are. I agree with Lorraine in that we cannot separate the body from mind or the mind from the body. The purpose of this particular blog post was to shed light on the fact that we do not have specific treatment protocols for many pelvic pain diagnoses as each person’s underlying cause is often different. The important thing is to figure out what likely makes the most sense for your particular case as many of these factors often exist together. Combination approaches that are individualized and multifactorial tend to be the most successful. I recognize this can be confusing as certain theories seem point to an ‘all or nothing’ mind VERSUS body approach. This is not the intended message from Lorraine and I as we believe our programs work well together and treatment does not have to be one or the other to be successful.

      Reply
  2. Mary Candelaria

    Thank you for clarifying this, Lorraine! I was also feeling somewhat perplexed after reading Stephanie’s post, particularly after listening to your introductory class on Tuesday. While I am sure that Stephanie is probably one of the best in her field, physical therapists are (by training and philosophy) evaluators and treatment providers of (what they perceive as being) mechanically based problems. They are not generally trained in psychology, nor in emotionally induced pain syndromes.

    Reply
    • Stephanie Prendergast

      Hi Mary,

      Thank-you for you comments. You are correct in that most physical therapists are not trained to evaluate emotionally induced pain syndromes. Thanks to information we now have available, PTs can help patients understand all possible underlying factors that they need to consider. Outside of emotionally induced pain, we cannot ignore the psychological impact persisting pain has on a person. The support and tools that come from programs such as Lorraine’s are also helpful for both of the scenarios and very complimentary to other treatments.

      Reply
    • Lorraine

      Hi Mary,

      You’re welcome and thanks for your comment! I’m glad to hear my reply was helpful. You are correct that PTs are trained in working with the physical and mechanical and that is often reflected in the way they think and talk about pelvic pain. However, what I have also seen is that there is a growing number of PTs out there specializing in pelvic pain/pelvic floor issues, like those at PHRC and elsewhere (there is a list on my resources page), that are aware of the mind body components of pain, including the complicated psychological and neurological factors, and address some of those in their treatments, as well as referring out for additional support. In fact, it was Stephanie and Allison Romero at PHRC who first introduced me to Lorimer Mosley’s work on the brain and pain. I agree with Stephanie, that PTs who are up to date on all of this, are in a unique position to be able to help patients understand all possible underlying factors and I appreciate PHRCs work to increase awareness around this! Also, just so you know we will talk more about how to successfully integrate PT and a mind body approach to relieving pelvic pain during the Healing Female Pain program (for those women who want to do that), as well as how to know what approach is best for you. Thanks again for your comments!

      Reply
  3. Mary Candelaria

    Dear Lorraine and Stephanie,
    Thank you for your responses. I see that I made a huge generalization regarding physical therapists, particularly those who specialize in pelvic pain. Having worked in the field myself over 25 years ago, there seemed to be a vague awareness at that time of “psychological overlays”, often labeled as “histrionic” by therapists when patients (usually female) didn’t improve in a timely manner. I hate to admit that I was once one of those therapists, who later found myself on the receiving end of it when my own chronic pain syndrome didn’t respond to treatment (talk about karma payback!)! I was so happy to hear about this remarkable, growing number of PT’s who understand the mind body connection, particularly in the very sensitive and tender world of email/pelvic pain!
    Thank you again!

    Reply
  4. Laurie

    I think it is best to find a medical team that you trust. It may take seeing a few doctors before finding the right one, but it is imperative to have the right medical team so that you can get the medical treatment that is right for you. Great information, thanks for sharing.

    Reply
    • Lorraine

      Agreed Laurie! Thanks for reading and for your comments.
      Warmly,
      Lorraine

      Reply

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