Why Stephanie and Liz are Writing a Book

In Female Pelvic Pain, Male Pelvic Pain by Stephanie Prendergast22 Comments

For the past six months, Stephanie and Liz have been busily working on writing a book titled Pelvic Pain Explained: Everything you Need to know to Help you Navigate the Complex Terrain of Pelvic Pain. The book will be published by Rowman & Littlefield. (We don’t have the publication date yet, so stay tuned for that info!) As we’ve watched them hustle to get the manuscript together, we couldn’t help but wonder what it was that made them decide to take on the task, so we asked them!

Q. What was the impetus for your writing a book on pelvic pain?

A. Stephanie: “Very little was known about pelvic pain when I started in the field 15 years ago. Many of the patients that I saw in the early years had been suffering for at least ten years, had seen more than 20 providers, and were often on disability and opiates.

At that time I was working with a physician and we specialized solely in treating pelvic pain disorders. For this reason, my experience as a pelvic floor physical therapist was different than most. Rather than taking a continuing education course, as many aspiring pelvic floor PTs do, I was working with a pelvic pain pioneer in an interdisciplinary setting. So I found myself at medical conferences arguing that the pelvic floor muscles can be a source of pelvic pain.

Sometimes I won the argument, most of the time I lost. During this time, I also developed manual therapy skills, knowledge about medications, procedures, and surgeries. We started to figure out what would and would not work for different types of patients. Being exposed to a high volume of people with pelvic pain very quickly taught me that despite similar symptoms or the same diagnosis,  every patient was different and I had to individualize treatment plans to get them to to work.

More importantly, however, I developed clinical reasoning skills to re-work the treatment when patients either stopped responding or could not tolerate treatment. And this happened all the time. As I was developing these skills, research started to emerge and the technology boom made this information available to anyone who wanted it.

Information does not equal knowledge, however, and I had to figure out what do with patient confusion from chat rooms, being criticized by other professionals in chat rooms, and how to incorporate new diagnoses and treatment options into clinical practice. Today, it’s widely accepted that the pelvic floor muscles can be a source of pelvic pain, though many medical professionals and sufferers still do not know it.

Furthermore, we know pelvic pain encompasses much more than the pelvic floor muscles, and treatment needs to be devised with this in mind. I wanted to write this book to acknowledge the struggles patients and providers encounter, and provide knowledge to streamline the current diagnosis and treatment strategies, even in the face of a broken healthcare system. My hope is that by sharing our knowledge we will provide a platform for more effective and efficient management of pelvic pain.

A: Liz: “For years our colleagues and patients asked, ‘When are you guys going to write a book?’ I guess we finally succomed to the pressure! We’ve been teaching, lecturing, writing in professional journals for years. This was just the next logical step.

But more to the point, there are so few resources out there with good, accurate information for people suffering from pelvic pain as well as providers who treat pelvic pain. And at the same time, there is a real knowledge deficit, even among providers who should know something about pelvic pain. The number of questions we get from people from all over the world on the phone, via email, via our blog, via our website really spoke to this. We believe their needs to be one resource for people to get all of these answers. Our hope is that having this book be that resource will serve to promote awareness to the public and professional community about pelvic pain and help people get better faster.

Q: How has this blog played into your decision to write a book?

A: Stephanie: “The blog has shown me that people need reliable information on pelvic pain and made me realize that sharing our clinical knowledge allows us to help people globally. Through the comments I have learned that people are getting appropriate care but just as many are not. We need to change this and do better!

A: Liz: “We get so many follow up questions and comments with every post. Plus, we receive a  tremendous amount of positive feedback from other providers as well as patients about this blog, so for me, that reconfirmed the need for good info about pelvic pain.

Thank you Stephanie and Liz for stoking our curiosity! The next four weeks will be pretty busy as we all pitch in to get the manuscript ready to turn into the publisher, SO a handful of friends of PHRC have generously agreed to pitch in with a month’s worth of fantastic guest blog posts!

Look for them in the coming weeks!

If you have any further questions about Stephanie and Liz’s upcoming book, please do not hesitate to leave them in the comment section below.

All our best,

The PHRC Team

 

Comments

  1. Please include a section in your book on PGAD as too few medical professionals and sufferers know that PT can actually help their symptoms. Looking forward to your book release!

  2. I am pleased you are writing a book on pelvic pain, not pelvic floor pain. They are different and while you can have both, I have seen specialists with their specialty glasses on. When they limit evaluation of a woman’s pelvic pain to their preferred secondary specialty, they do the majority of us a disservice by not looking at the whole person and not considering other diagnoses.

    1. Author

      Hi Judith,

      Thank-you for your accurate and insightful comment. We discuss this very point extensively in the book. Unfortunately and understandably, many people suffering with pelvic pain seek out specialists, often more than one, and because of a lack of provider communication people end up with multiple diagnoses and treatment plan confusion. Many people that travel to see us have been forced to direct their own care for too long. It is crucial for people to have one trusted medical professional helping them oversee the entire case and make sure they are getting appropriate care.

      1. Hi Ladies
        I Just wanted to add to your comment and say how much I agree!. As a pelvic pain suffer my pain story began with urinary issues. A few years later after seeing various providers, I developed sit bone, and then throbbing anal- rectal pain- the worst pain for me.
        I feel as if me (and my family) have gone around on a constant merry-go-round, which has resulted in only worsening my condition. Tho my symptoms are physical in nature, I know that the all the confusing diagnoses and the incredible amount of info I have studied and absorbed over the past several years have only made me more discouraged and and scared, which of course directly affects physical symptoms. I have often felt that I was forced to be my own doctor due to the severe lack of knowledge here on the East Coast– tho providers are very gradually becoming more educated…on these very painful conditions.. and how debillitating they are.
        Oh, how long I have prayed that my providers could understand, talk to each each other and be ‘on the same page’ regarding what I now feel is my particular disorder — ‘pelvic floor dysfunction’.
        If they were, I feel that I would not still be suffering today! I look forward to reading your book, and I think it will help to provide the medical knowledge that we patients and our providers need so much…..thx for writing this!
        BTW I so wish I lived in California, so I could have been seeing you ladies all these years! I live near NYC ,but am happy to hear you are opening an East Coast office in Boston…Thx again and best of luck!

        1. Hi Kathy – I am a pelvic PT in San Diego, and I was just wondering if you have gone to see Lila Abbate who is on Long Island. I have taken several classes from her – she is a fantastic pelvic PT and in classes she always stresses coordination of care with other providers so I am sure she incorporates that into clinical practice as well.

    1. Author

      Hi Belinda,

      Yes it will! Thank you for the great question!

      All my best,
      Stephanie

  3. This will be an amazing book. I can’t wait to read it. Thanks for writing it.

  4. I too, would love to see some reference made to treating PGAD. I struggle with this pudental neuralgia symptom. I have a wonderful PT, but I didn’t know pt could help PGAD specifically. We work on pfm’s that are tight from IC and PN. I take Gabapentin to relieve the awful PGAD and it works well for the most part. It would be nice to know of pt procedures to use along with the meds. Thanks!

    1. Author

      We will cover PGAD in the book. Physical Therapy can help with the symptoms of PGAD if neuromuscular impairments are contributing to the symptoms. Conversely, the PGAD sensation can also create neuromuscular impairments in response to pain/symptoms which in turn can cause other pain and dysfunction. Physical therapy treatment can help the impairments and is most effective when paired with pain management and central nervous system treatments.

  5. Well, that is fantastic news! Definitely will be on my “to buy and read” list. Will add to my site as well. Good luck with your writing. 🙂 Valerie

  6. I’m so glad you’re bringing pelvic pain the attention it needs! Will you be addressing the mind body aspect as well?

    1. Author

      Hello Lindsay,

      Absolutely! The mind body connection is an integral part of treatment, so we will devote a portion of our book to the subject.

      Best,

      Liz

  7. Congrats to both of you! So happy you’re writing this book. A friend of mine was diagnosed with MS almost a year ago & having bladder control issues. She is now in treatment for pelvic floor strengthening & doing much better. Thank you for your dedication & caring for people!

  8. I am thrilled you and Liz are writing this book. My case was a very complex one. A tramatic fall off my front step . Years of being told it was my back, then my tailbone , to being told I had RSD of the pelvis . As a patient with not just one primary reason for pelvic pain , I hope your book touches on some of these unique cases. After the PN decompression surgery the burning rectal pain was gone , and after excellent treatment with you and Dr W. I continued to have problems but logically it did not work for either of us. I have yet to find a PT as good or even half as good as you Stephanie. That is a problem for me and thousands of other patients. Continued SI joint pain, spondyolstheisis . Stenosis , horrific pelvic floor spasms and lack of the ability to hold urine , yet to be tight with spasms. More education for PTs that are treating men and women with pelvic pain should be mandatory . I tried many times to get PTs out to one of your classss or
    to a seminar and they were un willing . That is frustrating to patients such as myself. Congrats again to you and Liz. I’m very proud at how far you have come and all you have accomplished

    1. Author

      Hi Joan,

      Thank-you for your kind comments. I am sorry to hear that you are still suffering and we are dedicating a section of the book to the situation where a person with pelvic pain either cannot tolerate treatment or is not responding to treatment. More often than not, people go through one or both of these scenarios when on the path to recovery. We want to teach people how to troubleshoot through these roadblocks because you can and will get the pain managed with the right combination of therapies.

  9. Hi Stephanie & Liz,
    Hip-Hip-Hooray! I just wanted to congratulate both of you on the AWESOME news about your book. I will definitely be buying a copy!! Thanks Stephanie (and Allison) for the EXCELLENT PT treatments. This will be a MUST READ for anyone going thru pelvic pain. So excited and thrilled for both of you!
    xo
    Cathy 🙂
    P.S. I love the great tips and info on your blogs!

    1. Author

      Hello Cathy,

      Thank-you for your kind words and your support!

      All my best,

      Stephanie

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