Your Voices

Please enjoy the following testimonial of a patient who attended last year’s Alliance for Pelvic Pain retreat…

Which aspect(s) of the retreat do you feel benefited you the most?
The Grief/Loss session was incredibly freeing for me because it was the first time I fully expressed how much I had lost from the illness and how much it hurt. The difference being I expressed it to people who could understand because they had gone through it as well. Pelvic pain is such a lonely illness as it is hard for others to understand, and it is a destroying illness of relationships, ability to work, of self worth and esteem. It made me also realize that as I treated my body, I needed to consider treating my emotions too. I had never considered therapy to talk about it before then.

The presentations presented as a collective group were great. Some things I knew as I was already in the process of treatment, some things were new to me. The saying “it’s all connected” is so true and as I saw how the different conditions affected each other or how you could have more than one was enlightening in terms of being able to explore possible new treatments because maybe we were missing pieces of the puzzle.

I was a skeptic about the mind/body/meditation to help with the pain. That was new to me and didn’t seem like to would be of any great help. Until I went home, had a really bad episode and put on the free DVD from Alexandra that was included in our materials.  THAT was a revelation because it did calm my fight or flight response and help with bringing me out of my fog of pain. In hindsight, I would count that session and presentation as very valuable.

Have you made changes in your lifestyle or habits because of what you learned at the retreat?  The retreat provided me with new language to use when trying to express why I can or cannot participate in a certain activity and that has led to me being a little more comfortable talking about it. Now, most people just know I suffer from pelvic “nerve damage” and have no idea of the real truth of my suffering. But they understand pain and nerve damage and that is enough to give them a sliver of understanding why I carry my cushion with me everywhere. That is something the retreat gave me – for the first time I took my cushion out to dinner with me each night I was at the conference! Meeting other people like me made me feel not so “strange” and gave me the confidence to take my cushion with me so I could be comfortable for once at a restaurant. And I’ve become quite discreet about it!

The retreat also made me realize that I had to be kind to my body, even though I often think of it betraying me. But now I manage stress better, I will not overload myself for anyone else, and if I need to rest, I do. I also exercise more to keep my body moving.  Sure, I can’t do the high impact stuff of the years before Vulvodynia, but I can do other exercises with modification. It had been good for my mind as well as body.  I also take my supplements more seriously than I have in the past. Tart cherry concentrate has been so helpful, flax and fish oil every day, and vitamins B, E, K, D plus magnesium and biotin every day.

More from Our Upcoming Alliance for Pelvic Pain Interview!

Here are some more questions for our upcoming Alliance for Pelvic Pain Interview with Amy Stein on The Pelvic Messenger! Don’t forget to call in on Thursday, January 30th, at 6:00 PM EST.  Please feel free to call in and ask questions! To access the live interview next Thursday, please click the link below at that time:
http://www.blogtalkradio.com/pelvicmessenger/2014/01/30/alliance-for-pelvic-pain–interview. Don’t forget, Alliance members will be giving away free copies of their books, videos, and CDs to people who call in with questions!

4.    What about patients who have already tried physical therapy but it hasn’t helped, or even exacerbated their symptoms?

At Beyond Basics Physical Therapy, we often encounter patients who have previously been treated unsuccessfully by other physical therapists.  There are a variety of reasons why any given patient may respond better to one practitioner versus a different one.

The first factor involves the amount of experience and training of the physical therapist.  Very often, a patient may present with urinary incontinence and automatically be told to perform Kegels, pelvic floor strengthening exercises.  However, this may worsen the problem!  The physical therapist may inaccurately assume that weakness= incontinence, therefore strengthening seems like the appropriate course of action.  HOWEVER, we have often seen patients present with incontinence due to OVERACTIVE or SHORTENED pelvic floor muscles.  These patients require manual therapy and downtraining of the pelvic floor muscles, not uptraining and strengthening.  In fact, very often the weakness naturally resolves by correcting the shortened muscles and restoring normal resting tone.

Another factor is that if a patient doesn’t connect well with their physical therapist or if there is poor communication, the healing process will be hindered.  For example, if a patient feels nervous with the therapist or uncomfortable with any aspect of the treatment, their muscles will respond and reflect that fear by tightening.  This may be due to a personality difference, or it can be that they need to include some type of mental health therapy such as Mindfulness Based Stress Reduction.  Another example could be that the physical therapist is not asking the right questions or enough questions to obtain the information that they need to properly treat the patient.

Furthermore, the therapist may not be looking at the body as a whole.  They may not be trained or forget to incorporate treatment of the external musculature or the internal rectal and/or vaginal trigger points.  They also may not be incorporating relaxation techniques that are essential to their healing.  Another example is that they may not be trained in treating nerve pain (ex. pudendal neuralgia).

Also, the patient may not have gotten better because they might not have been receiving specific integrative treatment.  For example, a patient with fertility issues might be experiencing infertility due to visceral restrictions.  Such an individual would benefit from visceral manipulation treatment to restore mobility of the organs and to eliminate abdomino-pelvic cavity restrictions.  Very few therapists, even pelvic floor physical therapists, have advanced training in this technique.  Fortunately, Michele McGurk, a practitioner at Beyond Basics Physical Therapy who is highly trained in visceral mobilization, will be attending the retreat and available for one on one sessions.

STAY TUNED for additional information on this topic in future blogs!

5.    How will this year’s retreat be similar to last year’s retreat? How will it be different?

The retreat will be similar in terms of its goals.  The goals of Alliance for Pelvic Pain are to teach “pelvic 101” to patients from the perspective of physicians, physical therapists, mental health therapists, and other integrative therapies.  Similar to last year, we want to unite people who have pelvic pain to help build a support network.  Unfortunately, too many people suffer in silence and think that they are alone.  The retreat offers people the opportunity to discover that that is NOT the case and that there are others who can relate to their challenges.  The ongoing goals of the Alliance are to provide education and awareness about pelvic pain, to provide support, and to provide self care techniques to initiate the healing process immediately.

The retreat will be different in that we are addressing male pelvic pain.  We will also be joined by new practitioners who are very experienced in treating pelvic pain in men and women.  Some of these practitioners include: Dena Harris, MD, Jaclyn Bondar, MD, Michele McGurk, PT, Roseanne Cruz Schoen, DPT, Paula Haberman, PT, MS, LAc, Mindy Pickard, MS, LAc, Dana Reed, MS, CNS, and Galen Fou, health chef.  For more information of the Alliance for Pelvic Pain and the aforementioned health care providers, please refer to http://www.allianceforpelvicpain.com/upload/AFPP%20Program%20Schedule%202014_updated%201_15_14.pdf.

Amy LIVE on the Air: January 30!

By Riva Preil

To whet your appetite…enjoy the pre-game show!  Amy Stein will be interviewed LIVE on The Pelvic Messenger with Robert Echenberg, MD, and Lisa Petti, an attendee from last year’s Alliance for Pelvic Pain Retreat.  The interview will be to discuss the success of last year’s retreat as well as the upcoming retreat (March 8-9 in New York City).  The interview will take place next Thursday, January 30th, at 6:00 PM EST.  Please feel free to call in and ask questions! To access the live interview next Thursday, please click the link below at that time:
http://www.blogtalkradio.com/pelvicmessenger/2014/01/30/alliance-for-pelvic-pain–interview

Questions for Alliance Interview

1.    What topics will be presented at the retreat?

In the morning, we will present and discuss what pelvic pain is and the many factors contributing to pelvic pain, the possible causes, why it is so commonly misdiagnosed, evaluation and treatment from a physician perspective, mental health and physical therapy perspective.  In the afternoon, we will have workshops with the mental health providers on topics such as: emotional aspects of chronic pain, mindfulness-based stress reduction, coping techniques for wellbeing and ways to maintain hope.  Physical therapy workshops will include gentle self-massage techniques, stretches, and relaxation techniques specific to the pelvic floor.   There will also be a question and answer session with both Dr. Echenberg and Dr. Coady, which is new this year!  There will also be yoga each morning, with Dustienne Miller, as well as 1 on 1 evaluations and/or treatments with many wonderful integrative therapists and physicians.

2.    What are your goals for the retreat?

The goals for the retreat are to create a safe learning environment where participants feel comfortable in expressing their thoughts and feelings. Furthermore, the goals of this curriculum are for patients suffering from chronic pelvic pain (CPP) to develop proficiency in the following areas:

Participants will develop and practice self-healing techniques.
Participants will create a consolidation of self-care skills acquired during the therapies.
Participants will illustrate to themselves and others that progress can be made in managing their pain.
Participants will assess the cognitive, emotional, social, spiritual, and physical consequences of their chronic pelvic pain and how these influences are affected by the pain.
Participants will develop understanding of how CPP affects their sexuality.
Participants will develop an understanding of how CPP affects their relationships with friends, family, and themselves and will learn how to better navigate these relationships.
Participants will develop an understanding of multiple treatment approaches that they can explore within their own community.
Participants will learn how to reframe their sexuality as it relates to CPP.
Participants will have an opportunity to connect with others who share their experiences and feelings related to CP.

3.    Which patients are appropriate candidates to attend the retreat?

The retreat is appropriate for: Chronic pelvic pain, Interstitial Cystitis (IC), Irritable Bowel Syndrome (IBS), Pelvic Floor Dysfunction, Vulvodynia, Vestibulitis,Non-Bacterial Prostatitis, Lichen Sclerosis, Pudendal, Neuralgia, Endometriosis, and other pelvic and genital pain disorders (including hyperarousal disorder).

Can Strengthening Your Pelvic Floor Fix Your Low Back?

By Riva Preil

Pain in the low back can be a real pain in the neck.  Unfortunately, low back pain (LBP) is all too common– an estimated 60-80% of people worldwide suffer from LBP at some point in their lives.  Traditional treatment for LBP includes lumbar strengthening exercises as well as various modalities, including ultrasonography and short wave diathermy.  It has been suggested that strengthening the bottom portion of the core, the pelvic floor muscles, would further assist in decreasing LBP due to its contribution to balance, stability, flexibility, and assistance with movement.

Researchers in China at the Pudong New District Gongli Hospital, decided to ascertain the validity of this hypothesis (Pelvic floor muscle exercise for chronic low back pain, Journal of International Medical Research).  In their randomized controlled trial, participants were assigned to a control group and an experimental group and underwent treatment for twenty four weeks. The control group received routine treatment, including lumbar strengthening exercises (ex. prone leg lifts, prone chest lifts, and bridging), ultrasonography, and short wave diathermy.  The experimental group received the same treatment as the control group as well as pelvic floor muscle (PFM) strengthening exercises, which included contracting the PFM for six seconds followed by relaxing the PFM for six seconds.  This was performed for 5 minutes in total during week one, 10 minutes during week two, 15 minutes during week three, and 20 minutes during weeks four to twenty four.  At the 6 month follow up, the intervention group participants reported much lower pain levels and had improved scores on their functional outcome measure (Oswestry Disability Index) compared to the control group.  The take home message is: don’t forget about your pelvic floor while strengthening your back!  If you need help learning how to properly activate and strengthen your PFM, please contact us at Beyond Basics Physical Therapy- we are here to help!

The Magic in the Wand

By Riva Preil

Stress can be a little devil.  Not only can it result in tension headaches and jaw pain, but it can also result in tightness in the pelvic floor muscles.  In men, this pain has been described as “a golf ball in the rectum” or “stabbing pain in the groin.” It can interfere with one’s ability to urinate, pass bowel movements, participate in intercourse, tolerate prolonged sitting, or even wear underwear.  Oftentimes, these symptoms are often misdiagnosed as chronic prostatitis (inflammation of the prostate) when in truth, there is NOTHING wrong with the prostate… however plenty wrong with the pelvic floor muscles. Therefore, drugs, including antibiotics, prostate reducing medications, anti-inflammatories, anti-depressants, anti-anxiety medications, and steroids, do NOT help alleviate the pain.

An extremely effective approach to combat the pelvic floor muscle tightness is TRIGGER POINT THERAPY.  This approach involves applying pressure to the tight muscles to help them relax and release.  Fortunately, the FDA has recently approved a therapeutic wand, a two-foot long plastic device with a finger-tip like rubber end, to allow individuals to treat their own pelvic pain.  The device has a pressure gauge to ensure that patients don’t apply too much pressure while performing the internal self-treatment.  Dr. David Wise (a psychologist) and Dr. Rodney U. Anderson (emeritus professor of urology at Stanford’s medical school) worked with physical therapist Tim Sawyer to develop a thorough treatment plan for patients to perform their own internal trigger point releases through a program that  become known as the Stanford pelvic pain protocol.  This approach has been accepted by the American Urological Association.

Fortunately, we here at Beyond Basics Physical Therapy have been aware of the benefits of the wand long before the FDA.  It is a tool that is often employed during treatment and as part of home programs, for both male and female patients (depending on the judgment of the skilled physical therapist).  Perhaps this approach can help YOU treat your pelvic pain!  Please contact us at Beyond Basics Physical Therapy with any questions you may have, including whether the wand is appropriate for you!

A Personal Pelvic Perspective

By Riva Preil

Thank you, Ashley Elizabeth, for singing the praises of pelvic floor physical therapy and sharing your positive experience with the world!  Ashley bravely shared her personal story and victory against pelvic pain, particularly vaginal pain during intercourse, on January 6th (“It Happened to Me: My Vagina Needed Physical Therapy”, see link below).  Ashley explained why she opted for physical therapy rather than surgery.  In her comical fashion, she described what she expected physical therapy to be, “bouncing on those fun exercise balls and maybe practicing my Kegels while eating pastries or something.”  However, she encountered a completely different experience when she arrived at her initial evaluation with her “vagina magician.”

h-armstrong-roberts-1930s-magician-hands-pulling-rabbit-out-of-top-hat

Ashley’s pelvic floor physical therapist taught her that her pain during intercourse was most likely a result of her pelvic floor muscles as a conditioned response in addition to a remaining hymen skin tag (first detected by her gynecologist).  Ashley also described how biofeedback helped her realize that she was inadvertently clenching her pelvic floor muscles as a protective response, especially when she anticipated vaginal disturbance (ex. internal manual vaginal therapy from her therapist or during intercourse).  In Ashley’s own words, this new awareness allowed her to “work through it until I figured out a way to connect my brain to those muscles to pep talk them into chilling out.”  I couldn’t have said it better myself.  I encourage you read the rest of Ashley’s article- it is informative, entertaining, and inspirational, especially to those who can unfortunately relate to the symptoms Ashley experienced.  But fortunately there is hope!  We here at Beyond Basics are trained in pelvic floor muscle dysfunction, and we would love to use our “magic” to help you.