May is Pelvic Pain Awareness Month

Mayis PelvicPainAwarenessmonth

Fiona McMahon PT, DPT

May is Pelvic Pain Awareness Month: #PelvicPainAware. This is a big deal to us at Beyond Basics Physical Therapy, where we see it as our mission to spread awareness of pelvic pain and dysfunction to clinicians and patients alike. This month is spearheaded by the International Pelvic Pain Society (IPPS), of which, the founder of Beyond Basics, Amy Stein is the president. Amy took time to sit down with me to describe all of the fantastic things that are planned for this month so I can share them with you.

Before we get started, I want to share a little about IPPS, the organizer of Pelvic Pain Awareness Month. IPPS was founded in 1996. It is a society of healthcare clinicians who treat abdomino-pelvic pain conditions in men, women, and children. Their mission is twofold: “To educate healthcare professionals how to diagnose and manage chronic pelvic pain, thereby changing the lives of patients worldwide.” and “To bring hope to men and women who suffer from chronic pelvic pain by significantly raising public awareness and impacting individual lives.” Pelvic Pain Awareness month, is our opportunity to spread awareness among professionals and public alike in hopes of improving outcomes and demystifying pelvic pain.

Now let’s get started with Amy’s interview!

Fiona: Why did IPPS feel the need to start a pelvic pain awareness month?

  • Amy: I felt like it was needed. As president of IPPS, I wanted to make some changes to awareness, and I felt this was a great opportunity to get the word out and stop patients from having to suffer in silence. I wanted it to be abdomino-pelvic pain awareness month, but the phrase was too long.

 

Fiona: What activities does IPPS have planned this month to spread awareness of pelvic pain?

  • Amy: We created a pelvic pain awareness page on facebook and continue to tweet about it @intpelvicpain. We are also doing a blog talk radio interview with Lorimer Moseley, PhD, PT from Adelaide, Australia, on blogtalk radio/pelvic messenger on Thursday, May 18th at 7.30pm EST. Lorimer Moseley has written 270 articles and 6 books on pain. If you want to interview someone who is experienced in the study of pain and the brain, he is a good person to be interviewing. May 17th in New York City, we are doing a local fundraising/ networking event in the Green Room on 23rd street from 6:30-8:30pm to create more awareness locally. On may 25th, 9pm EST, 6pm PST we are doing a twitter journal club. An article on sexual health in women affected by cancer  will be featured, as well as one on vulvodynia, and prostatitis . [Click here to access the articles we will be discussing!] Each year we plan to add on more events for May is #PelvicPainAware both locally and internationally. 

 

 

Fiona: Why is it so important to build awareness of abdomino-pelvic pain conditions? What was the big driver for IPPS in doing this work?

  • Amy: Bringing awareness of abdomino-pelvic pain conditions is one of the main missions for IPPS, as well as Beyond Basics Physical Therapy and I believe it is a mission of many of other clinics, hospitals, etc, that treat pelvic pain. Again, it is such a common experience of many, many patients who visit us, to have gone to various well-known institutions throughout the country for pelvic pain, to be told it is all in there head and that they just need mental health therapy or a glass of wine. This infuriates me STILL (20 years later!), as well as the patients. Often times it will take just one session with an experienced pelvic health physical therapist or healthcare provider to have hope again. Many of our patients have been to 5 up to 10 physicians/healthcare providers and ended up being misdiagnosed, undiagnosed, or told to go home and relax; or even worse, have more sex or switch partners. Yes, pain is processed in your brain, but there is a physical component with most of these patients.

Fiona: Where would you suggest someone who is starting their journey? What resources would you recommend?

  • Amy: I would suggest to look at International Pelvic Pain Society, International Cystitis Association, IC-network, Endometriosis Association, National Vulvodynia Association, American Physical Therapy Association (APTA) or Herman and Wallace “ Find a provider”, for you to find physical therapists and physicians. Even taking that a step further, when you find a provider, do some research: ask how often your provider sees pelvic pain patients,, how long have they been treating in this area, because that can make a difference. If you go to someone who is not as experienced or is not trained, you might hit a roadblock or plateau in your progress.
  •  I would caution against looking up too much on patient-centered forums; however, here are a lot of great blogs out there that can help give you helpful information. There are some great books out there, like Heal Pelvic Pain, and Pelvic Pain Explained, Sex without Pain, and Pelvic Pain Management.  For providers, I want to add that IPPS is hosting the World Congress on Pelvic and Abdominal Pain in Washington D.C. at the Renaissance Hotel in October 11-15th. We have Lorimer Moseley and Paul Hodges flying in from Australia. They both have done extensive research in pain. This year we are doing 9 clusters on different topics with poster and abstract presentations, as well as a post conference on The Pain Revolution, with Paul Hodges, PhD and Lorimer Moseley, PhD, PT

Fiona: If you had to distill your message for May is Pelvic Pain Awareness month, what would you like the public, people with and without pelvic pain to get from this month?

  • Amy: I would like them to know there are resources and providers out there for abdomino-pelvic pain conditions. But remember to do your homework when deciding who and what is best for you. For providers, there are great resources too, including the International Pelvic Pain Society to help better your practice.

We also want everyone to know we are having a give away in honor of Pelvic Pain Awareness Month! Learn more info below!

For Everyone!

IPPS Facebook Page

Twitter: @IntPelvicPain #pelvicpainaware

IPPS

Blog Talk Radio/Pelvic Messenger

 

For Patients!

International Pelvic Pain Society: Find a provider

National Vulvodynia Association: Health Care Provider List

APTA Find a clinician

Herman and Wallace Find a Clinician

 

Give Away Information

Giveaway open internationally ). Must provide a mailing address within 48 hours of notification of winning, otherwise another winner will be selected at random. Click here for full details,
We have several generous donors lined up for the hour and will be randomly giving away the following items during the event:
1 Copy of Amy Stein’s Book “Heal Pelvic Pain” & DVD Healing Pelvic and Abdominal Pain”  (follow @beyondbasicspt @HealPelvicPain2)  (Open to International)
1 Copy of Heather Jeffcoat’s book “Sex Without Pain: A Self Treatment Guid to the Sex Life You Deserve” (follow @SexWithoutPain @TheLadyPartsPT) (Open to International)
1 Copy of Stephanie Prendergast and Elizabeth Rummer’s book “Pelvic Pain Explained”   (follow @PelvicPainExp @PelvicHealth) (Open to International)
1 Gift Card to Soul Source Dilators (link to soulsource.com)  (follow @SoulSourceTD) (Open to US only)
2 EndoFemm heating/cooling pads by Pelvic Pain Solutions (Open to US only)
2 CAPPS Travel Cushions by Pelvic Pain Solutions by Pelvic Pain Solutions  (follow @EndoFEMM) (Open to US only)
2 Multi-Comfort Therapy Pads by Pelvic Pain Solutions (Open to US only)
Official Rules: This giveaway is open to US only (except where specifically indicated as international above). The following guidelines must be followed to be eligible: Use the #PelvicPainAware hashtag during the twitter party from 6PM PST to 7PM PST to be entered into the random drawing. Must follow @IntPelvicPain @TheLadyPartsPT so we may contact you after the event regarding your winnings. Winners will have 48 hours from the time of notification to provide us with their eligible mailing address, or else a new winner will be randomly selected.
 
Twitter Party/Journal Club Disclaimer: Tweets during the 1 hour event are not to be taken as medical advice. We recommend following up with your team of providers to gain your most optimal care.

 

PH101: Pain and Sexuality: Is it all in my head?

cute-couple-with-umbrella-in-blossom-field-web-header

By Fiona McMahon, DPT

Sex should feel good… really, really good. But when it doesn’t, you may start to wonder, what’s wrong with me? Am I broken? Am I a prude? Am I frigid? Painful sex isn’t something we talk about. No one would look at you twice if you walked into work complaining of pain in your elbow, but if you walk into work complaining about pain in you vagina or penis, you may end up having a meeting with HR.

On April 13th, at 7pm, we at Beyond Basics are breaking down those taboos and having an educational seminar, followed by an optional question and answer session at the end. We will discuss the many causes of sexual pain and how physical therapy can help.  The event will be hosted by one of our therapists, Stephanie Stamas, DPT, ATC. Stephanie will give a detailed seminar about pelvic health and take time to clear up some common misconceptions many people have concerning their bodies and sexual function.

Please join us at our office at:

110 East 42nd Street, Suite 1504

New York, NY 10017
Register at: pelvichealth-101.eventbrite.com

Here is our line up of this and future classes

pelvic-health-101-spring-2017

PH101: Something’s Wrong with my What?

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Image via PlayBuzz

On March 16, 2017 at 7pm we will be kicking off our spring semester of pelvic health education class, we call Pelvic Health 101 (PH101). In our first class we will be introducing you to the pelvic floor muscles, where they are, what they do, and how they relate to the health and function of your bowel, bladder, and sexual functioning. We will also be covering how things such as alignment, posture, muscle tone and nerves can affect your symptoms. This course is a great starting point to help you understand your pelvic floor and pelvic floor symptoms.

Please join us at our office at:

110 East 42nd Street, Suite 1504

New York, NY 10017
Register at: pelvichealth-101.eventbrite.com

Here is our line up of this and future classes:

pelvic-health-101-spring-2017

Tune in! Blog Talk Radio: Persistent Genital Arousal Disorder

Stephanie Stamas, DPTblog-talk

We have exciting news! Our very own physical therapist, Dr. Stephanie Stamas, will have the honor of interviewing Dr. Irwin Goldstein on the talk radio show, The Pelvic Messenger. Dr. Goldstein is an expert in sexual medicine and world-renown physician specializing in the treatment of sexual dysfunction and pain. He is currently the Medical Director of Sexual Medicine at Alvarado Hospital in San Diego, Director of San Diego Sexual Medicine, Editor-in-Chief for The Journal of Sexual Medicine and President of The Institute for Sexual Medicine.

Dr. Goldstein will be discussing the often-sensationalized topic of Persistent Genital Arousal Disorder, or PGAD. The International Society for the Study of Women’s Sexual Health (ISSWSH) defines PGAD as “a persistent or recurrent, unwanted or intrusive, bothersome or distressing, genital dysesthesia (abnormal sensation) unassociated with sexual interest.” This condition has gotten more and more media attention over the past decade as several magazines have covered individual’s personal struggles. The most unfortunate aspect of PGAD is people perceptions of the condition as possibly “desirable.” Magazine headlines reading “I Have Orgasms All Day Long” misconstrue the fact that it is a pain condition and that the orgasms are painful, not pleasurable, which can be devastating.

There are several theories behind why this condition occurs, ranging from excessive sensory information from irritated nerves, tight pelvic floor muscles that can cause changes in the local nerves and genital tissues and/or a decreased inhibition of the central sexual reflex in the brain. Often, PGAD is a subset of a larger group of disorders known as Chronic or Persistent Pelvic Pain.

With over 35 years of experience, it will be an honor to pick Dr. Goldstein’s brain on diagnosing PGAD and effective treatment techniques that he has used in this patient population. To learn more about PGAD, make sure to listen in on Sunday, February 5th at 3 PM EST at http://www.blogtalkradio.com/pelvicmessenger.

In Memory of Gretchen Molannen

By Riva Preil

On December 1, 2012, Gretchen Molannen ended her life tragically after years of suffering from Persistent Genital Arousal Disorder (PGAD). PGAD is a disorder where the individual experiences prolonged and intense periods of genital arousal. The symptoms may be relieved temporarily by stimulating an orgasm, however the symptoms usually return within several hours. Certain situations may trigger the symptoms, including riding in a car or cell phone vibration. For many, the discomfort associated with increased arousal progresses to pain, and those who suffer from PGAD often refrain from intercourse due to pain and/or shame. In addition, this condition interferes with many activities of daily living, such as attending to work related tasks and interpersonal relationships.

Unfortunately, researchers have limited information regarding the cause and treatment for PGAD. To date, it seems that there is a connection between PGAD and sensory nerve dysfunction. PGAD is also associated with pudendal nerve entrapments; nerve blocks have been used to treat PGAD with limited success. In some cases, PGAD may be related to pelvic arterial-venous malformation, in which case surgical intervention is indicated to correct the underlying issue. Antidepressants, antiandrogenic medications, and anesthetic gels have been prescribed to help alleviate the discomfort. However, “one of the problems with PGAD is a lack of knowledge. Many doctors don’t know about it and it’s not even recognized by the medical community as an official condition. Therefore any procedures that may potentially reduce the problems are not covered by insurance because there’s no code for PGAD. What’s more, it’s unknown how many women have the condition since many choose not to talk about it out of embarrassment” (quoted from the Ryan Jaslow’s article in CBS News; see link above). Furthermore, people experiencing PGAD may very likely benefit from pelvic floor physical therapy.  PGAD can increase sensory and motor nerve sensitivity, and it can create pelvic floor muscle tightness. This tightness can pull on the genital region and increase the symptoms of arousal and pain. Furthermore, the tightness can restrict and irritate the nerves in the pelvic region which results in hypersensitivity to the surrounding organs and in the general region. Pelvic floor physical therapy can help treat the musculoskeletal and nerve restrictions associate with PGAD.

Gretchen was courageous by sharing her story with the world. May her tragic story raise public awareness regarding the debilitating nature of this terrible disease thus spurring further research into appropriate treatment methods.  May she rest in peace.