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.