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: Ladies Only Session

By: Fiona McMahon, DPT
Hey Ladies!!! In our next installment of our Pelvic Health 101 course, we are hosting a women’s only session to allow for a safe and non-threatening place to discuss many issues that can affect the health of your pelvic floor. This class one of Stephanie Stamas’s (the founder of PH101’s ) favorites and is definitely not to be missed. Join us at 7pm on April 20th, 2017  Please register at pelvichealth-101.eventbrite.com.

Location

110 East 42nd Street, Suite 1504

New York, NY

10017

pelvic-health-101-spring-2017

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?

herhis_2-03
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

Spring Pelvic Health 101 is Coming

Fiona McMahon, DPT, PT

Pelvic Health 101 is back with some old favorites like, “Something’s wrong with my what?” and “Why is pooping so difficult?” We have also added a new course on pediatric pelvic floor issues.

If you have questions, we have answers. Join us for lectures and question and answer opportunities with expert pelvic health physical therapists, childbirth educators, and nutritionists. Please reserve your spot early at pelvichealth-101.eventbrite.com. Remember spots fill up quickly. As always, light refreshments will be served.

pelvic-health-101-spring-2017

Tightly Wound: A film chronicaling one women’s experience with vaginismus

82dd259670080346145f13af296dd0b2_original

At Beyond Basics Physical Therapy, we treat a lot of conditions that limit or entirely prevent someone from having sex. One of those conditions is Vaginismus. The frustration and physical toll can be tiring for patients with this condition. One of the sentiments echoed time and time again by different patients, is how isolating the whole experience can be. Not many people talk about their sex life, let alone medical conditions affecting their ability to have sex. Shelby Hadden is looking to break the stigma by making her own film chronicling her experience with vaginismus. You can read her story and support her Kickstarter campaign here to fund her movie.

I was 24 and had never had sex. I had been dating Gadi for a few weeks and I couldn’t play defense to his advances any longer. It was time to tell him about my vaginismus.

Vaginismus was always the big black cloud of a secret looming over me.

But he surprised me. When I told him about it, he said, “I like you a lot, and we can figure this out. I still want to see you.” My heart soared. No guy I had dated up to that point had showed me an ounce of empathy, patience, or understanding. One guy walked out of my apartment, promised to call me, and never spoke to me again. Another laughed in my face and said, “That’s hilarious.” Finally, someone liked me as a whole person, not just the functionality of one body part.

The next day, he texted me this: “I’ve been thinking about what you shared with me the other night. I feel like it may be a bit more than I am ready for in a relationship. Sex is too important to me.”

He couldn’t even bother to consider what else we could do or ask how my progress in physical therapy was going. I couldn’t do it RIGHT THEN so I was “too much” for him – which in reality, in situations like these, it means that I wasn’t enough.

I was angry. I’ve been angry before – at other guys, at my body, at doctors, at Shonda Rhimes shows for making sex look so easy, fast, and fun – but this time I was absolutely furious. He gave me the reaction I had always hoped for, only to take it all back. I was just a vagina to him too. In addition, he never considered how important sex was to me. I had gone to a dozen doctors over the course of seven years. I had been going pelvic floor physical therapy every week for over a year. I had been using dilators every day for three years. No one was working harder to have sex than I was.

I needed to take action. As a filmmaker, the only way I knew how to take control over it was to make a film. So I wrote an essay, which I later turned into a script for a short animated film called, Tightly Wound.

Tightly Wound follows my journey from when I started my period and realized I couldn’t use a tampon. It chronicles the various doctors I saw and treatments I tried, the ways I hid my secret. I delve into my unsuccessful attempts at dating and explore what it means to be a virgin in today’s society.

It’s been a year since Gadi broke up with me. My essay has been published in BUST Magazine and I shared my experience at BedPost Confessions – an Austin, TX based storytelling series on sex, gender, and social change. I’ve assembled an extremely talented team of filmmakers to produce the film.

Animation is the perfect form for this film. It allows me to illustrate my internal thoughts and feelings in a metaphorical way rather than succumbing to the limitations of live-action. However, animation is an extremely time-consuming and labor-intensive process. The fastest my animator, producer, and friend, Sebastian Bisbal, can work is 5 seconds of animation per day!

 

We are raising $20,000 through Kickstarter. Kickstarter is a crowd-funding platform that allows people to support projects they believe in. Kickstarter is all-or-nothing – so if we don’t raise the $20,000, we don’t get any of it at the end of November.

It is estimated that 6% [ In a  study done by the World Health Organization, worldwide prevalence of pelvic pain has been estimated as being as high as 24%] of people with vaginas encounter pelvic pain/sexual dysfunction at some point of their lives. However, this is a difficult number to determine since shame and embarrassment keep so many people from seeking medical care.

Please join me in making this film and shining a light on pelvic pain/sexual dysfunction by donating to the Kickstarter. Thank you so much for your support!

Kickstarter link: http://kck.st/2dUTASv

Check out the trailer here: https://vimeo.com/188456092

Sincerely,

Shelby Hadden

 

Sources:

Latthe P, Latthe M, Say L, et al. WHO systematic review of prevalence of chronic pelvic pain: a neglected reproductive health  morbidity. BMB Public Health. 2006