Tag Archives: Interstitial Cystitis

Interview with Sara Sauder, PT on Vestibulodynia, Contraceptives and Bladder Pain

A few weekends ago, I had the awesome opportunity to host Sara Sauder and Kelli Wilson in teaching their course, Vestibulodynia: An Orthopedic and Pelvic Floor Approach. The course was fantastic, and both Kelli and Sara are excellent instructors. Their course is unique in that it 1) focused on a very specific diagnosis (super great for those of us who have been practicing for a while 2) is very small–a max of 12 participants, meaning lots of one on one time with instructors 3) includes a facetime conversation with a well-known pelvic pain medical expert (in our case, Dr. Irwin Goldstein) and 4) allows participants to both perform treatments on instructors and have instructors perform treatments on participants.

Sara and I have been “virtual” friends for quite some time… in fact, I can’t remember when exactly we started e-mailing, but we became penpals of sorts. We share journal articles with each other, and I believe I even told her I was pregnant before I told many of my other friends (truth!). So, needless to say, I was SO excited for us to finally meet in person and become real friends. And, Sara was so gracious to agree to answer some of my questions to share some excellent insight with all of you on vestibulodynia and her course. I hope you enjoy!

JR: First, can you briefly explain what vestibulodynia is to my readers out there who are unfamiliar?

SS: Vestibulodynia is pain at the vestibule.  The vestibule is a specific tissue at the opening of the vagina.  The opening of the vagina itself has a name which is the “introitus”.  The vestibule is part of the introitus.  It is considered part of the vulva even though it may seem that it extends into the space between vulva and vagina.  Hence the name…vestibule.  It’s like a hallway.  Or…an alcove, if you will….
Other than that simple explanation, vestibulodynia can feel like pain, itching, burning discomfort at the opening of the vagina or at the urethra or the bladder.  The aftermath of this sort of pain can result in lots of other things happening, like feeling pain inside the vagina, at the other areas of the vulva including the clitoris.  

JR: Thank you for explaining that further. Now, there are so many pelvic pain diagnoses out there…why a course on vestibulodynia?

SS: Vestibulodynia is truly a common denominator in so much female pelvic pain.  I think that if we can start to recognize the vestibule hurts, then we can get to the root of why someone has pain.  There is a logical way to think about why the vestibule hurts and we if we can understand the true why of the pain, then we can treat it.  In treating that one core issue, we will see that other symptoms that may seem unrelated start to resolve.

JR: That’s a really good point. We see vestibulodynia as a common issue with so many different pelvic pain syndromes. One in particular, that we discussed in more detail at your course, is Interstitial Cystitis or Painful Bladder Syndrome. Now, most people see IC/PBS as a “Bladder Problem,” but you shared some interesting information about the relationship between pain at the vestibule and urethral/bladder pain. Can you explain that for our readers?

SS: The vestibule, urethra and lining of the bladder (including the urachus) are all made of endodermal tissue.  They are all part of the same embyrological tube.  Their needs are the same.  That’s why you often see pain at the vestibule with any bladder symptoms.  That’s why the reverse is true.  You will see bladder symptoms with pain at the vestibule.

JR: That is fascinating, and also helps us to understand why some treatments for one may also be effective for the other (for example, both populations can have an increased hystamine response–especially during allergy season– and may have a decrease in pain with using anti-histamines! Moving on, in your course (which was awesome!), you discussed some of the main causes of vestibulodynia. The role between oral contraceptive use and vestibulodynia was discussed in detail. So many people are surprised to hear that being on birth control could contribute to their vulvar pain. Can you explain that a little bit more?

SS: Any product that affects the body’s sex hormones can affect parts of the body that are dependent on sex hormones.  So, using a combined hormonal contraceptive or any other medicine that affects estrogen and testosterone will affect the vulvovaginal tissue.  These areas are sex hormone dependent, to varying degrees based on their different embryology.  We go into this in super detail in the vestibulodynia course.  The mechanics of it are repeated over and over because if this isn’t truly understood, we, as physical therapists, will never understand what kind of progress is or isn’t possible for our patients.  If a woman is on a medication that will lower their sex hormones and I keep treating her for symptoms of sex hormone reduction, I’ll be banging my head on the wall if I don’t understand that hormonally there are changes taking place that I can’t affect until the patient gets off of or alters that medication.

JR:  That is especially interesting to me, as I have seen several patients (as well as a few close friends!) who have used oral contraceptives develop vulvar pain or pain with sexual intercourse. Now of course, we know that not everyone who takes OCPs will develop vestibulodynia, but it seems like certain individuals may be more susceptible than others. And the current research seems to recognize some of these problems occurring, to the point that now OCPs are no longer the most recommended type of contraceptive for women (especially younger ones). I know this was something we chatted a little bit about with Dr. Goldstein during our facetime chat at your course. (ReadersHere’s an interesting article about contraceptives and vulvar/bladder pain you may find helpful!)

Now, Vestibulodynia can be a tough diagnosis for clinicians to treat. What are the most common mistakes you think physical therapists make when working with women with vestibulodynia?

SS: The most common thing I find with clinicians of any discipline in working with patients with vestibulodynia is that often we completely miss the fact that the patient has vestibulodynia in the first place.  Either the vestibule is completely removed from the assessment because it is pushed aside with a speculum, or it is not assessed via appropriate and specific q-tip testing.  If we miss that we are dealing with issues at the vestibule, we are missing the point.

JR: So, true of many diagnoses! So, wrapping things up…one of the things I love about you is how hard you work to advocate for your patients– it’s amazing! So, let’s say I’m a woman reading this, and I think I have vestibulodynia. What should I do?

SS: If you think you have vestibulodynia, definitely talk to your physician about it.  Explain your symptoms and ask to see a pelvic floor physical therapist.  When you get a referral, call the physical therapist before your evaluation.  Ask if they have treated vestibulodynia, ask how they treat it and ask about their success in treating it.

JR: Thank you so much for taking the time to chat with me about vestibulodynia, and for coming to our clinic to share such an awesome course this weekend! I know we all really enjoyed it and found it super useful in learning to provide the best care we can for the women we treat who are experiencing vulvar pain (and really, pelvic pain in general!)

If you are a clinician who works with women with pelvic pain, I highly recommend Sara Sauder and Kelli Wilson’s course, Vestibulodynia: An Orthopedic and Pelvic Floor Approach. For more information, please check out their website: http://www.alcoveeducation.com/

3377681_origSARA K. SAUDER PT, DPT
is originally from Dallas, has lived in Houston and prefers life in Austin. She received her Doctor of Physical Therapy from Texas Woman’s University in 2010, but began practicing with her Master in Physical Therapy in 2007.  She works at Sullivan Physical Therapy and specializes in pelvic pain and mentors pelvic floor physical therapists through a professional mentorship program. To focus her interests, she authors the blog, Blog About Pelvic Pain. Through this medium she voices her opinion and experiences with diagnoses and treatments for pelvic pain. She has also been a guest writer for popular blogs such as Pelvic Guru, Pregnant Chicken, Scary Mommy and Pelvic Health and Rehabilitation Center’s As the Pelvis Turns. Sara interviews and shadows internationally-recognized specialists alike. She is a member of the American Physical Therapy Association’s (APTA) Section of Women’s Health (SOWH), International Pelvic Pain Society (IPPS), the International Society for the Study of Women’s Sexual Health (ISSWSH) and the National Vulvodynia Association (NVA).  She is as blurry in person as she is in her photos.

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Why get Pelvic PT first? And, join me for a webinar Thursday 12/10!

If you didn’t know, December 1st was a day that all PTs came together to share with the public all of the benefits of seeking PT! My colleague, Stephanie Prendergast, founder of the Pelvic Health and Rehabilitation Center in California, wrote an amazing blog post on why someone should get pelvic PT first. I thought it was great (as you know…I post lots of Stephanie’s stuff), and Stephanie gave me permission to re-blog it here. So, I really hope you enjoy it. If you aren’t familiar with Stephanie’s blog, please check it out here. You won’t regret it. 

On another note, I will be teaching a live webinar Thursday 12/10 on Pelvic Floor Dysfunction in the Adult Athlete. I really hope to see some blog followers there! Register for it here.  

Now… enjoy this great post by Stephanie. ~ Jessica 

Why get PT 1st? Here are the Facts. By Stephanie Prendergast

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Vaginal pain. Burning with urination. Post-ejaculatory pain. Constipation. Genital pain following bowel movements. Pelvic pain that prevents sitting, exercising, wearing pants and having pleasurable intercourse.

When a person develops these symptoms, physical therapy is not the first avenue of treatment they turn to for help. In fact, physical therapists are not even considered at all. This week, we’ll discuss why this old way of thinking needs to CHANGE. Additionally, we’ll explain how the “Get PT 1st” campaign is leading the way in this movement.

We’ve heard it before. You didn’t know we existed, right? Throughout the years, patients continue to inform me the reason they never sought a physical therapist for treatment first, was because they were unaware pelvic physical therapists existed, and are actually qualified to help them.

Many individuals do not realize that physical therapists hold advanced degrees in musculoskeletal and neurologic health, and are treating a wide range of disorders beyond the commonly thought of sports or surgical rehabilitation.

On December 1st, physical therapists came together on social media to raise awareness about our profession and how we serve the community. The campaign is titled “GetPT1st”. The team at PHRC supports this campaign and this week we will tell you that you can and should get PT first if you are suffering from a pelvic floor disorder.

Did you know that a majority of people with pelvic pain have “tight” pelvic floor muscles that are associated with their symptoms?

Physical therapy is first-line treatment that can help women eliminate vulvar pain

Chronic vulvar pain affects approximately 8% of the female population under 40 years old in the USA, with prevalence increasing to 18% across the lifespan. (Ruby H. N. Nguyen, Rachael M. Turner, Jared Sieling, David A. Williams, James S. Hodges, Bernard L. Harlow, Feasibility of Collecting Vulvar Pain Variability and its Correlates Using Prospective Collection with Smartphones 2014)

Physical therapy is first-line treatment that can help men and women with  Interstitial Cystitis

Over 1 million people are affected by IC in the United States alone [Hanno, 2002;Jones and Nyberg, 1997], in fact; an office survey indicated that 575 in every 100,000 women have IC [Rosenberg and Hazzard, 2005]. Another study on self-reported adult IC cases in an urban community estimated its prevalence to be approximately 4% [Ibrahim et al. 2007]. Children and adolescents can also have IC [Shear and Mayer, 2006]; patients with IC have had 10 times higher prevalence of bladder problems as children than the general population [Hanno, 2007].

Physical Therapy is first-line treatment that can help men suffering from Chronic Nonbacterial Prostatitis/Male Pelvic Pain

Chronic prostatitis (CP) or chronic pelvic pain syndrome (CPPS) affects 2%-14% of the male population, and chronic prostatitis is the most common urologic diagnosis in men aged <50 years.

The definition of CP/CPPS states urinary symptoms are present in the absence of a prostate infection. (Pontari et al. New developments in the diagnosis and treatment of CP/CPPS. Current Opinion, November 2013).

71% of women in a survey of 205 educated postpartum women were unaware of the impact of pregnancy on the pelvic floor muscles.

21% of nulliparous women in a 269 women study presented with Levator Ani avulsion following a vaginal delivery (Deft. relationship between postpartum levator ani muscle avulsion and signs and symptoms of pelvic floor dysfunction. BJOG 2014 Feb 121: 1164 -1172).

64.3% of women reported sexual dysfunction in the first year following childbirth. (Khajehi M. Prevalence and risk factors of sexual dysfunction in postpartum Australian women. J Sex Med 2015 June; 12(6):1415-26.

24% of postpartum women still experienced pain with intercourse at 18 months postpartum (McDonald et al. Dyspareunia and childbirth: a prospective cohort study. BJOG 2015)

85% of women stated that given verbal instruction alone did not help them to properly perform a Kegel. *Dunbar A. understanding vaginal childbirth: what do women understand about the consequences of vaginal childbirth.J  Wo Health PT 2011 May/August 35 (2) 51 – 56)

Did you know that pelvic floor physical therapy is mandatory for postpartum women in many other countries such as France, Australia, and England? This is because pelvic floor physical therapy can help prepartum women prepare for birth and postpartum moms restore their musculoskeletal health, eliminate incontinence, prevent pelvic organ prolapse, and return to pain-free sex.

Did you know that weak or ‘low tone’ pelvic floor muscles are associated with urinary and fecal incontinence, erectile dysfunction, and pelvic organ prolapse?

Physical Therapy can help with Stress Urinary Incontinence

Did you know that weak or ‘low tone’ pelvic floor muscles are associated with urinary and fecal incontinence, erectile dysfunction, and pelvic organ prolapse? 80% of women by the age of 50 experience Stress Urinary Incontinence. Pelvic floor muscle training was associated with a cure of stress urinary incontinence. (Dumoulin C et al. Neurourol Urodyn. Nov 2014)

30 – 85 % of men develop stress urinary incontinence following a radical prostatectomy. Early pelvic floor muscle training hastened the recovery of continence and reduced the severity at 1, 3 and 6 months postoperatively. (Ribeiro LH et al. J Urol. Sept 2014; 184 (3):1034 -9).

Physical Therapy can help with Erectile Dysfunction

Several studies have looked at the prevalence of ED. At age 40, approximately 40% of men are affected. The rate increases to nearly 70% in men aged 70 years. The prevalence of complete ED increases from 5% to 15% as age increases from 40 to 70 years.1

Physical Therapy can help with Pelvic Organ Prolapse

In the 16,616 women with a uterus, the rate of uterine prolapse was 14.2%; the rate of cystocele was 34.3%; and the rate of rectocele was 18.6%. For the 10,727 women who had undergone a hysterectomy, the prevalence of cystocele was 32.9% and of rectocele was 18.3%. (Susan L. Hendrix, DO,Pelvic organ prolapse in the Women’s Health Initiative: Gravity and gravidity. Am J Obstet Gynecol 2002;186:1160-6.)

Pelvic floor physical therapy can help optimize musculoskeletal health, reducing the symptoms of prolapse, help prepare the body for surgery if necessary, and speed post-operative recovery.

Did you know….

In many states a person can go directly to a physical therapist without a referral from a physician? (For more information about your state: https://www.apta.org/uploadedFiles/APTAorg/Advocacy/State/Issues/Direct_Access/DirectAccessbyState.pdf)

You need to know….

Pelvic floor physical therapy can help vulvar pain, chronic nonbacterial prostatitis/CPPS, Interstitial Cystitis, and Pudendal Neuralgia. (link blogs: http://www.pelvicpainrehab.com/patient-questions/401/what-is-a-good-pelvic-pain-pt-session-like/, http://www.pelvicpainrehab.com/male-pelvic-pain/460/male-pelvic-pain-its-time-to-treat-men-right/http://www.pelvicpainrehab.com/female-pelvic-pain/488/case-study-pt-for-a-vulvodynia-diagnosis/)

Pelvic floor physical therapy can help prepartum women prepare for birth and postpartum moms restore their musculoskeletal health, eliminate incontinence, prevent pelvic organ prolapse, and return to pain-free sex: http://www.pelvicpainrehab.com/pregnancy/540/pelvic-floor-rehab-its-time-to-treat-new-moms-right/

Early pelvic floor muscle training hastened the recovery of continence and reduced the severity at 1, 3 and 6 months in postoperative men following prostatectomy. (Ribeiro LH et al. J Urol. Sept 2014; 184 (3):1034 -9). (Link blog: http://www.pelvicpainrehab.com/male-pelvic-pain/2322/men-kegels/

A study from the University of the West in the U.K. found that pelvic exercises helped 40 percent of men with ED regain normal erectile function. They also helped an additional 33.5 percent significantly improve erectile function. Additional research suggests pelvic muscle training may be helpful for treating ED as well as other pelvic health issues. (link blog:http://www.pelvicpainrehab.com/male-pelvic-pain/2322/men-kegels/

….that you can and should find a pelvic floor physical therapist and  Get PT 1st.

To find a pelvic floor physical therapist:

American Physical Therapy Association, Section on Women’s Health:

http://www.womenshealthapta.org/pt-locator/

International Pelvic Pain Society: http://pelvicpain.org/patients/find-a-medical-provider.aspx

Best,

Stephanie Prendergast, MPT

stephanie1-150x150Stephanie grew up in South Jersey, and currently sees patients at Pelvic Health and Rehabilitation Center in their Los Angeles office. She received her bachelor’s degree in exercise physiology from Rutgers University, and her master’s in physical therapy at the Medical College of Pennsylvania and Hahnemann University in Philadelphia. For balance, Steph turns to yoga, music, and her calm and loving King Charles Cavalier Spaniel, Abbie. For adventure, she gets her fix from scuba diving and global travel.

Can physical therapy help a “bladder problem?” Highlights from my presentation at the Atlanta Interstitial Cystitis Support Group

Jessica IC Support Group

Yesterday, I was fortunate to speak with the Atlanta area Interstitial Cystitis (IC)Support Group regarding physical therapy interventions for men and women with IC/PBS (Painful Bladder Syndrome).  I love working with men and women with IC for so many reasons. First, IC can be a fairly scary diagnosis for a lot of people as there is not one specific known “cause”, nor is there a “cure” that works for everyone. Dr. Google can also cause quite a bit of fear as the newly diagnosed read “horror stories” of people who have suffered for years and years with debilitating pain.

The amazing thing is that often times, bladder pain can actually have strong musculoskeletal components and neuromuscular components that are easily addressed with a skilled physical therapist–but in order to understand that fully, we will have to dive in a little deeper. So, here are some of the highlights from the presentation I gave to this wonderful group last night. (Sidenote: IC/PBS is different in everyone, meaning that some treatments work great for some and not so well for others. This blog highlights physical therapy interventions for IC, but please know that each person with IC will have a different journey toward recovery. I strongly recommend building a network of health care providers and finding the treatment that works the best for you.)

First, we started with a little pop quiz–and we’ll start you with the same, to test your knowledge on physical therapy for people with IC :). 

1. True or False.  It is common for men and women with IC/PBS to have tenderness and banding of the pelvic floor muscles as well as other soft tissues structures around the pelvis.

True. A study by Peters and colleagues in 2007 estimated that 87% of people with IC/PBS also have pelvic floor muscle tenderness.

2. True or False.   Traditional pelvic floor strengthening (Kegels) are helpful in reducing pain for men or women with IC/PBS.

False. For people with tender pelvic floor muscles, traditional kegel exercises are actually contraindicated. The American Urological Association’s Guidelines for the Evaluation and Treatment of IC states that people who are receiving physical therapy with kegel exercises should stop treatment and seek out care from someone with advanced training in working with this population.

3. True or False.  The most recent American Urological Association’s Guidelines for the Evaluation and Treatment of IC/PBS strongly recommends physical therapy for men and women diagnosed with IC/PBS.

True. I know, I sort of gave it away in my answer up above. But physical therapy interventions such as education on IC and dietary modifications, use of cold/hot packs, stress management strategies, managing tender points in muscles, pelvic floor relaxation exercises and managing constipation/sexual pain are considered first-line treatments in the most recent guidelines. Of note, manual physical therapy including connective tissue mobilization is a second-line treatment.

In order to better understand how physical therapy can help someone with IC, we need to look a little deeper into why the muscles around the pelvis become tender in the first place. At my presentation last night, we spent some time discussing the muscles of the hips and abdomen as well as the pelvic floor muscles. If you aren’t familiar with these muscles already, you can take a quick course by reading Tracy Sher’s article here.

bladder in pelvis

We then spent some time discussing some of the reasons the muscles and the soft tissues of the pelvis become tender when someone has IC. Specifically, we discussed the following mechanisms:

1) Tension response to pain: Basically, if the bladder is hurting, I will likely contract the muscles around it to “protect” the painful area. Over time, those muscles can become fatigued and tender.

2) Viscerosomatic reflex: When the brain is receiving a “danger” message from the bladder for a long period of time, there will often be an increase in sympathetic nerve activity (fight or flight response) which can lead to increased inflammation and decreased blood flow in the muscles and the connective tissue around the organ. Over time, this can contribute to tender muscles around the organ. We also often will see that muscles which are innervated by nerves at the same spinal cord level will also have some increased sensitivity and tenderness.

3) Somatovisceral reflex: This is basically the reflex above, but in reverse. Tendernesss in the muscles or a “danger” message from the muscles can also create that same sequelae of events which may lead to increased sensitivity at an organ near those muscles. The cool thing is that we can use this to our advantage because treating the muscles and tender soft tissues can actually help to decrease the bladder irritation!

Typically, for people with IC, we see connective tissue restrictions in the suprapubic area, abdomen, thighs, buttock and perineal area. We also will see tender and sensitive muscles including the pelvic floor muscles, adductor muscles, hip flexors, hamstrings, piriformis and gluteal muscles. Treating these muscles with manual therapy and connective tissue mobilization can help to improve blood flow, decrease inflammatory chemicals and improve the sensitivity in these structures. You can read more about connective tissue mobilization in this blog post by my colleagues over at the Pelvic Health and Rehabilitation Center.

This all ties in very nicely with our current understanding of the neuroscience of pain, which of course, is where we went next.  Much of what we discussed last night can be found in greater detail in the book, Why pelvic pain hurts which I summarized for you a few weeks ago here. The key thing to recognize is that pain is our body’s alarm system— it’s meant to tell us when there is “danger” and to help us protect ourselves. For someone who has had pain for a long time, this system can become sensitized meaning that previous non-painful activities or areas of the body can start to become perceived as painful. This is also influenced by a strong “fight or flight” response which basically can make your body respond like it is constantly under attack. Our brain integrates all of this with our previous experiences, emotions, fears, etc. All of this contributes to a worsening pain experience.  The great thing is that we now know that there is so much we can do to help re-train a brain that is constantly “protecting!” 

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So, next we moved to the most important piece…what can a skilled physical therapist do for someone with IC/PBS? 

 1. Education– knowledge is power and this is such an important component for someone with pelvic pain! We typically will discuss the following:

  • Dietary education
  • Bladder/Bowel habits
  • Sexual function
  • Sleep habits
  • Stress Management
  • Relaxation training/downtraining
  • Neuroanatomy of pelvic pain

2. Desensitizing and retraining the nervous system 

  • Manual therapy techniques (discussed more below)
  • Specific stretches to lengthen muscles
  • Graded motor imagery
  • Posture/alignment training
  • Breathing/Relaxation
  • Setting of appropriate goals, pacing and graded exposure to movements

3. Manual therapy techniques to reduce muscle soreness, improve blood flow,  and desensitize the nervous system

  • Connective tissue mobilization
  • Internal soft tissue treatment to the pelvic floor muscles
  • External soft tissue treatment to the muscles around the abdomen and pelvis
  • Dry needling
  • Scar tissue management

Recent research has shown that manual therapy for someone with IC is very effective in reducing pain. In fact, a multicenter study by Fitzgerald and colleagues in 2012 showed that 60% of women with IC who were treated with soft tissue treatments and connective tissue mobilization saw moderate-marked reductions in pain and improved urinary urgency and frequency.

We closed our discussion last night with a plan of action– reviewing some basic recommendations to get started on improving pain for people with IC.  It was wonderful to meet with this awesome support group! For those of you with IC or bladder pain, the IC Association has a list of support groups that are registered in cities in the US and internationally. They also have great options for online support groups.

If you live in Atlanta or the surrounding area, Judy Eichner is the group coordinator. She can be e-mailed at: icatlanta@live.com.

As always, I would love to hear from you! What have been your experiences with physical therapy IC? Is there anything you would like me to add for future presentations? Let me know in the comments!

Have a great weekend!

~ Jessica

TBT: If you can’t drink coffee…try Barley coffee!

Yes, I realize it’s Friday and I am one day behind on my throw-back. I’m sorry. Anyways, today’s post was published here in 2013 after I presented at the Greenville Interstitial Cystitis Support Group. I always love working with local support groups, and I am excited to be presenting to and learning with the Atlanta Area Interstitial Cystitis Support Group next month!  I had such a wonderful time with those ladies and I was introduced for the first time to Barley coffee–yes, you heard me right–coffee made from Barley. For many people with bladder problems including Overactive Bladder, Interstitial Cystitis/Painful Bladder Syndrome, and Urinary Incontinence, regular coffee is not tolerated well and can exacerbate symptoms. Barley coffee is a great alternative that packs a great taste (I was skeptical too, but it’s true!) but doesn’t have the acid and caffeine which irritate. Check out my post, and give it a try! 

coffee-386878_640

In April 2014,  I was fortunate enough to meet with a lovely group of ladies at their support group for people who have been diagnosed with Interstitial Cystitis/Bladder Pain Syndrome.  (For those of you who are not familiar with this condition, you can read about it here) This is a fantastic group started by Martha Fowler, RN back in 2010. Since then, I can tell you that Martha has been an amazing support for several of my patients! So many times, people feel alone when struggling with pelvic pain conditions, and it’s nice to talk with others who understand first hand what you are going through. For those of you reading this who live in other areas (such as Atlanta, like me!) there are tons of other support groups out there for people with IC/PBS. The Interstitial Cystitis Association (ICA) has a great list here.

Anyways, before we got started, Martha introduced us to Barley coffee—I know what you’re thinking—weird, nasty, gross—but I was shocked that I actually enjoyed this concoction! When I first tasted it, I will admit, I poured myself approximately ¼ cup (assuming I would hate it), but I quickly went back, filled it all the way up and drank the entire thing!  SERIOUSLY! I actually think I may keep this on hand to drink on a regular basis. I have long wanted to cut back on my caffeine intake, and really, this may be the ticket!

Why the need for Barley Coffee?

For people with Interstitial Cystitis (and other bladder/bowel problems), coffee can be quite irritating to the bladder. Coffee is a double-whammy of irritation—not only does it have caffeine, but it is also highly acidic. Mix this together, and you get a very unhappy bladder—and if you have IC/PBS, that equals pain and strong urges to urinate.

What is Barley?

Barley is a grain and a member of the grass-family. You may recognize it from being used as animal food as well as in beer, bread, soups and stews.  The Whole Grain Council (yes, it exists) has listed several health benefits of eating barley including lowering blood sugar, decreasing cholesterol, and possibly with weight loss. And what about drinking it? Well, I will admit it’s not quite the same since you are not actually consuming the grain—but, it seems like a good option for your bladder! And it tastes pretty darn good.

barley

Check out the recipe!

Martha’s Barley Coffee

Ingredients:

1 bag of barley (dry—looks like rice)

Water

Directions:

1. Roast barley over medium heat, stirring constantly until browned.  (WARNING: Per Martha, this may cause some smoke, so make sure your kitchen is ventilated! Stirring constantly reduces likelihood of burning). Best to roast slowly as this decreases the likelihood of burning

2. Allow to cool completely. Store in airtight container until ready to use.

3. Add a few tablespoons of roasted barley to a pot of water and heat over medium. The longer you heat the water/barley the “darker” your coffee.

4. Strain out barley & save for later use! Serve in your best coffee pot with cream/milk & sugar.

I hope you enjoy this wonderful coffee substitute! What other substitutes have you used for dietary intolerances? 

Have a great weekend! ~ Jessica

Book Review: Why Pelvic Pain Hurts

I love books. I love picking out a new book, flipping through the pages, and escaping for a small time into a different world. My love of reading translates so easily into my clinical practice in women’s health and pelvic floor physical therapy. Clients who have worked with me know that I keep a shelf of related books in my practice for them to look through and enjoy. I find books are so helpful for my clients experiencing related problems. Often times, men, women and children with pelvic health problems feel alone and so isolated. The reality is that these issues are private ones–I will often treat clients whose own spouses are not aware that these issues are occurring! And there are SO many great pelvic health books out there! The biggest thing I love about my clients reading books is that it helps the to realize they are not alone. So many other people have these problems too–so many that there are books written about it! I also think that reading information helps the learning process for many so much more than just hearing information spoken by me! My hope in “book reviews” is to share some of those awesome books with you, so you can read them, recommend them and learn from them! Whether you are a patient seeking information, a health care provider, or just an interested individual, I hope these reviews will be helpful!  Enjoy! 

from amazon.com

from amazon.com

I am so excited to introduce you today to a wonderful little book called, Why Pelvic Pain Hurts by Adriaan Louw, Sandra Hilton and Carolyn Vandyken. These authors are all physical therapists and both Sandy and Carolyn are Pelvic PTs. To be honest, I’ve followed Adriaan Louw for quite some time now. I have read some of his other educational books such as Why do I hurt? and I have even listened to his online educational seminar via Medbridge called “Teaching People About Pain.” He’s brilliant–so I knew I would love this book from the moment I heard it was being published! Who should read it? 

  • Men & Women experiencing chronic pelvic pain
  • Clinicians working with men and/or women experiencing chronic pelvic pain
  • Families & friends of people experiencing chronic pelvic pain

What are the details? 

  • Cost: $15.69 on Amazon.com
  • Length: 67 pages with great illustrations, broken into 5 sections.
    • Understanding your body’s alarm system
    • Understanding your extra-sensitive alarm system
    • Understanding your pelvic pain
    • Understanding your Lion and how it impacts you
    • Understanding your treatment options

What’s so good about it?  As you may know by reading my blog, I love how the current understanding of pain is so much more than just tissue damage. Our nervous system is powerful and incredible, and is significant in the pain experience. Often times, clinicians run into difficulty when they start talking with clients about the neuroscience related to chronic pain– mostly because these people have had bad experiences in the past with people thinking their pain is “all in their head.” Louw does a great job of emphasizing that pain is a real experience no matter what situation it occurs under, but that pain does not always correlate with tissue damage. Hurt does not always correlate with harm. This book uses fantastic metaphors and stories to help drive home key points. The book begins in the first two sections by describing the nervous system’s involvement in the pain experience, and goes into detail as to how these systems become overly sensitized in a person experiencing chronic pain. I especially love the pages where the authors highlight all of the situations that contribute to a more sensitized system (such as failed treatments, family concerns, fear/anxiety, ongoing pain, etc.) as I think this is such a big piece for people to understand. The next section focuses on pelvic pain specifically, initially beginning with highlighting one of the major problems in overcoming pelvic pain (the “taboo”). They then go on to utilize a wonderful analogy of a measuring cup being “filled” by the 400 nerves in the body passing information to the brain. This measuring cup “overflows” when a large volume of information is being sent or when emotions/stressors surround the experience (like a flame heating the water in the cup). This metaphor is used throughout the book with treatment focused on helping the water to stop boiling over.  The rest of this section goes through various diagnoses related to pelvic pain, but also emphasizes that the pain experience (from a neurological perspective) is the same in most diagnoses despite the differences in the symptoms. Lastly, the authors describe the difference between tissue problems and a sensitive nervous system.

Your metaphorical pain "cup"

Your metaphorical pain “cup”

Section 4 utilizes a fantastic metaphor of being under attack by a Lion and describes in detail how the body feeling under a constant threat of danger and in a strong protective response can contribute to experiences such as tender areas in the body, mood swings, appetite changes, fatigue… and much more! They also describe the other areas in the brain that are involved with pain and the overlap with different tasks (such as sensation, movement, and even memory!). They also maintain compassion and understanding for the experience unique to people with pelvic pain, and beautifully state, “At the core of being human, being alive, there are certain bodily functions that should not only be pain-free, but enjoyable…when you have pelvic pain, you’re not only robbed of pleasure, but the pleasure is replaced with pain. How unfair is that?

lion

Don’t worry- the book does not end here :). Section 5 discusses treatment options emphasizing that treatment should be aimed at stopping filling or emptying the “cup” or extinguishing the “fire” under the “cup.” Then, the authors systematically go through current treatments including knowledge/education, manual therapy, soft tissue treatment, specific exercises, graded motor imagery, aerobic exercises, medication, sitting posture, breathing/relaxation, sleep, stress management, and activity pacing/graded exposure. Under each of these categories, clear explanations are given as well as recommendations to get started! I could write a whole other blog post on these recommendations…but then you wouldn’t be thirsty for more, would you? So, all of that to say– this was a wonderful book! I strongly recommend it for men and women experiencing chronic pelvic pain– it’s an easy read, cheap, and offers clear recommendations to get started toward pain-free relief. Knowledge truly is power when it comes to recovering from chronic pain. Do you have any questions about the book? Have you read it yet? What books do you love and want me to review next? I would love to hear from you in the comments below! ~ Jessica

How should urgency suppression strategies be modified for the tender or “hypervigilant” pelvic floor muscles?

Urinary urgency, frequency and incontinence are complex and involve the interactions of multiple systems (somatic, visceral and neurological). These three problems are treated commonly in pelvic physical therapy and women’s health physical therapy practices. Urgency suppression strategies were initially developed based on these systems- with the understanding that the pelvic floor muscles were not contributing their part to the system.  In my opinion, this was largely based on the understanding the incontinence/urgency occurred when the pelvic floor muscles were not strong enough to properly hold back urine. But, over time we have learned that this is not always the case. (See my recent post here).

toilet-1033443_1280

So, do the same urgency suppression techniques apply for a tender pelvic floor muscle group? Hhow should urgency suppression techniques be modified for the overactive, shortened or hypervigilant pelvic floor?

To understand this, I first need to introduce you to the standard urgency suppression techniques.

UST Traditional

Now, please don’t take this as “Jessica doesn’t think urgency suppression techniques work,” because that is simply not true. I use these in the clinic all the time—for my patients who are experiencing urgency or urge incontinence and have weak, under-functioning pelvic floor muscles. These techniques work for this population a few different ways:

  • Deep breathing facilitates the parasympathetic nervous system which helps to keep the walls of the bladder relaxed thus allowing the bladder to fill and decreasing urgency. This breathing also helps to decrease the emotional fear that a person may feel (“Ahh, I hope I make it to the bathroom!”) which also will calm urgency due to the impact this has on the brain.
  • Strong, quick, contractions are thought to stimulate the neurological connection between the pelvic floor muscles and the bladder. Basically, quick contractions tell the bladder “it is not yet time to empty” and the bladder relaxes its contractions (which make us feel the strong urge) helping to calm urgency.
  • Distraction/Visualization are ways to get the mind off of the bladder and on to something else. Remember when you needed to go to the restroom, but got busy and forgot you needed to go? This aims to utilize that same mechanism to calm urgency and allow postponement of the urge.

Sounds great, right? And it is—really great for people who are experiencing urgency and have weak, underactive pelvic floor muscles. But what about for the people having overactive/shortened/hypervigilant pelvic floor muscles?

My thought process is that these techniques have to be modified to allow them to be effective for this population. First, we will keep a few steps and here’s why:

Deep breathing & Distraction/Visualization: I actually love these (especially the calm breathing) for my patients with difficulty relaxing the pelvic floor muscles. I often find that people with overactive pelvic floor muscles tend to be in a sympathetic-drive state for their nervous systems. Remember, the sympathetic nervous system is the “fight-or-flight” response. People who have chronic pain or chronic urgency/frequency often will have a significant amount of stress and fear, and I find that this state of their system often facilitates poor breathing patterns and overall increased tension and poor force modulation (meaning, choosing the right amount of muscle activity for the current task at hand). My colleague, Seth Oberst, wrote an amazing post about this very thing recently (I could write an entire post applying all of that to the pelvic floor!). So, we’ll keep these steps—with an emphasis on slow, calm breathing, utilizing the diaphragm and emphasizing relaxation of the pelvic floor with the inhale and returning to baseline with the exhale.

But here’s where we modify:

Quick, strong, pelvic floor contractions: My issue with this component for the overactive or hypervigilant or shortened pelvic floor muscles stems from a few key points. Traditional “kegels” or pelvic floor strengthening exercises are contraindicated for people with pelvic pain (or in my mind, anyone who has a tender, hypervigilant or overactive pelvic floor). Performing quick contractions for this population often will create pain, worsen the patient’s symptoms and actually increase urgency. You heard that right. Did you know that the pelvic floor muscles can actually refer to the bladder? I have had many instances when examining a person’s pelvic floor muscles that he/she reported that even lightly pressing on certain muscles made him/her feel urgency. And we know that somatovisceral convergence (a muscle impacting an organ) is real, and does occur.  So, what do we do about this step?

We use this relationship in our favor.

Instead of quick, hard contractions, the person can perform deep breathing and pelvic floor drops (emphasizing complete pelvic floor relaxation). Although initially, some of my clients will worry that relaxing the pelvic floor muscles will “open the flood gates” this does not typically occur. Instead, relaxation of the pelvic floor combined with breathing will often calm down the detrusor (bladder muscle) activity and allow them to feel decreased urgency.

So, what do these new urgency suppression strategies look like?

 New UST

 What do you think? If you have a tender pelvic floor and/or pelvic pain, I encourage you to give it a try! Let me know what you think! As always, I would love to hear from  you!

~ Jessica