May Is Pelvic Pain Awareness Month!

While there are many causes to be aware of and advocate for, one close to our hearts at the International Pain Society is abdomino-pelvic pain, and we are excited to report that May is Pelvic Pain Awareness Month! This designation for May was created by the International Pelvic Pain Society last year. So let’s talk a few moments about what is pelvic pain, how impactful the diagnosis can be, and what we can do!

By: Kaitlyn Parrotte, PT, DPT, OCS, CFMT
Edited by: Amy Stein, DPT, BCB-PMD

According to the American College of Obstetricians and Gynecologists, chronic pelvic pain is described as a “noncyclical pain of at least 6 months’ duration that appears in locations such as the pelvis, anterior abdominal wall, lower back, or buttocks, and that is serious enough to cause disability or lead to medical care.”1 While the incidence and prevalence of chronic pelvic pain in men and women are reported in an inconsistent manner,2 some estimates compare its global prevalence to asthma (4.3%-8.6%), and one to the prevalence of low back pain (23.2 +/- 2.9%).3 Individuals who suffer from chronic pelvic ad abdominal pain also often present with other complicating factors such as depression, anxiety, poor sleep, difficulty with work, and/or relationship issues. Also, many people with chronic pain are commonly disabled by fear that activity will make things worse.2 Furthermore, pelvic pain is puzzling as it is a multisystem disorder, which includes sexual, bowel, urinary, gynecological, and musculoskeletal symptoms. It is challenging to determine a clear mechanism of pain with this diagnosis, and the term “pelvic pain” does not take into account the many signs and symptoms that may be occurring outside of the anatomical pelvis.2  

Due to the complicated nature of this condition, there is a significant economic burden associated with management of it. In the United States, approximately $881.5 million was spent on chronic pelvic pain to cover the costs of direct healthcare. Additionally, approximately $2 billion was spent as an overall cost, which includes direct medical costs and indirect costs, such as those related to absenteeism from work.3 Besides economic burdens on individuals suffering from chronic abdominal and pelvic pain, there are also many challenges for the healthcare system to deal with. For instance, while a diagnosis of chronic pain in the United States typically yields more than 80% of physician referrals, it is estimated that only about 15% of individuals with chronic pelvic pain consult primary care providers, and only 40% of this group are referred to specialists for further investigation.3 Furthermore, if specialist care is involved in the management of chronic pelvic pain, it is often spread between multiple specialties, such as urology, gynecology, urogynecology, colorectal services, pain medicine, and even occasionally spinal services, rheumatology, and neurology. Thus, there is a risk that patients may be passed back and forth between different teams of the same speciality, or between different specialties, and may not receive consistent or effective care.2  In a nutshell: chronic abdomino-pelvic pain can be a debilitating condition that can have significant consequences on an individual’s physical, mental, economic, and social well-being.

Hopefully, if you were not already passionate about raising awareness of pelvic pain, you now have some insight as to why this cause is so important! Now the question lies, what can you do? How can you get involved?

One thing that you can take action is by hosting a local event to raise awareness and/or funds for research and educational programs that will promote more effective diagnosis and treatment for those suffering from abdomino-pelvic pain; these funds can be directly donated to IPPS! While hosting an event may seem overwhelming, it is actually easier than you think! Here is a guide to help you plan one:

How to plan and host a Pelvic Pain Awareness Event

Step One: decide what type of event and where

Some ideas are to host a bar night, a get together at a coffee shop with a musician, a lecture in the form of grand rounds or a community education event in the name of pelvic pain awareness.

*bar night: easiest option: no planning other than location, an agreement from the bar to donate a portion of the proceeds, and getting people to come.

*more involved: plan a speaker night for pelvic pain awareness--could be yourself and/or other speakers. Location could be your office, coffee shop, hospital, or restaurant/bar.

Examples of previous events:

1. Coffee shop example: Milwaukee’s 2017 event was held at a coffee shop.   Healthcare providers were invited. When response was low, the event was opened up to patients, friends and family. There was a flyer posted in the clinic. Attendees ordered from the menu and the coffee shop donated 20% of what was ordered. Several patients wrote checks to IPPS who could not attend.

2. Speaker event example: “Girls Night Out” style event in Los Angeles: This event was held in a Speakeasy. Cocktails and hors d’ouvers were served. Entry fee was required, but the fee was offset quite a bit by corporate sponsors. There were approximately 50 people (due to room size) and we sold out.  There were 4 speakers- 2 urogyns, 1 PT, and 1 sex therapist.  It was designed as a community event, but other providers did purchase tickets to attend, too.

3. Bar night example: “Asked a friend to use part of his bar for non-profit event.”  The bar gave reduced food prices and first drink free.  2 PT’s and 1 MD collected an entrance fee for food and drink tickets on the event planning website Eventbrite and at the door. All proceeds went to IPPS.

The to do list:

  1. Choose a date in May.
  2. Speak with venue. Many bars are willing to donate up to 20% of proceeds to a charity for 1-2 hours: it brings people into the bar/restaurant, it shows support for the community and they write it off as a donation: (Provide them with www.pelvicpain.org and let them know we are a non-profit 501c3).
  3. Arrange speakers if planned.
  4. Make flyer with template provided (See attached).
  5. Entrance fee: Suggested donation (i.e., $25 food/drink value, charge $45) vs. donation from venue proceeds.
  6. Raffle option: Reach out to local and pelvic pain vendors for prizes (i.e., hot packs, massages, free spin class, restaurant gift certificate, etc.). Can have raffle tickets sold at the bar. (e.g. $6=1 ticket, $1=2 tickets, $20=5 tickets)
  7. If you have industry connections, you could ask for support for the event as well.

Getting the word out:

· Display the flyer in your clinic (see attached template)

·        Contact Heather: heather@fusionwellnesspt.com  to get posted on IPPS Twitter, website, and Facebook accounts.

· Post on your social media. Let them know this is happening across the country.

· Do a press release with a local paper.

Getting funds to IPPS:

Send checks to IPPS Business office.

Questions:  Contact Debbie Callif: debbie@callif.org   262-240-1202 or Amy Stein: amy@beyondbasicspt.com  212-354-2622

If hosting an event is not a possibility, you can still contribute in many ways:

  1. Meet with practitioners in your area to educate them on chronic pelvic pain and build a referral network for patients.
  2. Host a community outreach program at your clinic, at a local gym, at a workout studio, or at a community center, to help make the general public more aware of what pelvic pain is, and what can be done about it. This way, you are better equipping patients to be able to advocate for themselves!
  3. Donate funds for research and educational programs at the International Pelvic Pain Society website (https://wjweis.association-service.org/securesite/ipps/donations.aspx).

There are many ways to contribute! So circle the month of May in your calendars and consider how you can participate. Together, we can help bring chronic pelvic pain into the forefront of healthcare, to ensure individuals dealing with this condition are receiving consistent and effective care.

Sources:

  1. Andrews J, Yunker A, Reynolds WS, Likis FE, et al. Noncyclic chronic pelvic pain therapies for women: comparative effectiveness. AHRQ Comparative Effectiveness Reviews, Rockville (MD), 2012.
  2. Baranowski AP, Lee J, Price C, Hughes J. Pelvic pain: a pathway for care developed for both men and women by the British Pain Society. Br J Anaesth. 2014;112(3):452–9.  
  3. Ahangari A. Prevalence of chronic pelvic pain among women: an updated review. Pain Physician. 2014;17(2):E141–7.

Moving Toward Gender Inclusive Pelvic Pain Healthcare

March 14, 2019

Moving Toward Gender Inclusive Pelvic Pain Healthcare

Moving toward gender-inclusive pelvic pain healthcare.  Social Worker and IPPS member, Renee Dumaresque, provides guidance for healthcare providers on incorporating gender inclusive care into their practice. 
This blog also provides useful information for ALL pelvic pain providers.





By:
Renee Dumaresque, MSW, Ph.D. Student

You may already be dedicated to building a gender inclusive pelvic pain practice, and, perhaps, have your own ideas about how to provide safe and accessible care for transgender and gender diverse patients. This post is not meant to be exhaustive, and, of course, I am unable to speak on behalf of every transgender and gender diverse person living with pelvic pain. Hopefully, this piece can provide an entry point into learning more, or will contribute a thing or two to your existing knowledge about gender-inclusive healthcare. Based on my lived experience as a gender non-binary person with vulvodynia, and my professional experience as a social worker who is pursuing their Ph.D. in relation to queer and trans healthcare, I hope to offer some thoughts that may be helpful in making your practice more inclusive for transgender and gender diverse folks.

Chronic pelvic pain impacts people across the gender spectrum, but, for many transgender people, healthcare is not safe or accessible. Too often, this results in patients being denied appropriate care, withdrawing from care, or not engaging with healthcare at all. Healthcare holds the potential to be a transformative space of healing, support and affirmation, and there are initiatives all over the world that model dedication to gender-inclusive healthcare. What’s important, is your desire to learn, the courage to make mistakes, apologize, and try again.

Dominant understandings of health, pathology, and treatment, as well as the delivery of healthcare services, are often approached and practiced based on mainstream ideas about gender as binary and as biological. Within “women’s health”, for example, research, diagnostics, and treatment equate gender identity with biological ideas about sex. Gender does impact a person’s health and health care, but gender identity does not determine a person’s body parts or the health issues that lead a person to seek health-related support. There is no such thing as a “woman’s body” or a “man’s body”. For example, a man can have a uterus, a vulva, or breasts; and, a woman can have a prostate and testes.

A person’s gender identity relates to the way that they perceive their own experience of gender, which may or may not correlate to the sex that they were assigned at birth, for example, male and female. Mainstream ideas about gender suggest that there are only two genders and that a person must identify as a man or as a woman. However, gender exists on a spectrum, meaning that there are many ways that a person might experience gender, and for lots of people, gender is fluid throughout the course of their life.

Everyone has an experience of gender, not only transgender and gender diverse folks. For cisgender people, too, gender can shift and be extremely nuanced. When a person identifies as cisgender it means that their gender identity corresponds to gender norms associated with the sex that they were assigned at birth, for example, a person who was assigned male at birth and identifies as a man. Transgender or ‘Trans’ is an umbrella term to describe the many ways that people identify and experience gender that differs from societal norms regarding gender and gender identity.

The term ‘Trans’ does not suggest that all Trans people identity in the same way and it is not meant to erase the differences that exist between people’s unique experiences and understandings of gender. Trans includes transgender men and women, but it also includes people who don’t necessarily identify as either a man or a woman, and who may or may not identify as transgender, for example, non-binary, agender, gender fluid, and Two-Spirit folks, etc. Ideas about gender also vary within and between cultures, where people may or may not identify with Trans identity.

Transgender identity is not dependant on physical transition, for example, hormones or surgery. Gender transition may or may not involve physical aspects, but it can also include emotional, spiritual, and many other shifts. Be mindful of the language that is used by your patients to describe their bodies and experiences. For some patients, labels such as “pre-operative” and “post-operative” will be problematic because of the assumption that transition must include physical change, but for others, these terms might feel right. It is important to remember, for both cisgender and transgender individuals, that the words people use to describe their experiences and their identities can mean many different things for different people. There are no generalizable rules about gender.

You cannot assume a person’s gender by looking at them. Gender expression is different than gender identity - it relates to the way that a person presents, such as masculine, feminine, androgynous, etc. Like gender identity, gender expression is often fluid, it might change day to day, and it is not dependent on gender identity.

With respect to pelvic pain healthcare, consider who is currently left out of the conversation? Which bodies and identities are not included in research, treatment, and support? What assumptions exist related to gender? Although there are many structural barriers to gender-inclusive healthcare, there is a lot that you can do to make your practice safer and more accessible to transgender and gender diverse folks. Increasing access and inclusivity does not mean implementing special practices for Trans patients that differ from the practices that you use with cisgender patients. By providing gender-inclusive care, to all patients, you will contribute to the development of new norms in mainstream healthcare. You will help to address the structural issues that result in marginalization and erasure of transgender and gender diverse patients.

Trans patients live whole lives that don’t always center their gender identity. For the most part, people want to visit their healthcare provider and be treated just like everyone else – to feel included, considered, and like their experiences and bodies are equal to other patients. Below are some ideas about how you can increase accessibility within your pelvic pain practice.

  1. Consider the advertisements, signage or other materials that you display in your clinic.

    Avoid placing material in your clinic that equates specific experiences and medical issues with a specific gender. For example, frameworks of women’s health often exclude and erase transgender and gender diverse people and their experiences. Consider displaying a sign or a poster in your clinic which communicates to patients that your clinic values transgender and gender diverse patients. Remember that signage, alone, is not helpful and must be accompanied by a thoughtful practice dedicated to gender inclusivity.

  2. Understand that building trust takes time.

    Recognize that patients are often coming into your practice having had negative experiences in healthcare. It is normal and reasonable that Trans patients might enter from a place of distrust. In fact, for a lot of people, having their guard up is a safety precaution that has been both smart and necessary. For this reason, be patient, avoid making judgments, and understand that you are in a unique position to provide a different and positive experience of healthcare. Communication and transparency is key to building trust. Always communicate what you intend to do, check in with patients about their comfort level, and ask for consent along the way.

  3. Respect patients chosen name.

    Ask patients to share their name and don’t assume that the name they provide will be the same as what you see listed on their health identification. Safety concerns, legal and financial barriers, social and family issues, and personal choice are some of the many reasons that a patient’s name might differ from their legal name or the name that appears on their health identification.  Ask patients what name appears on their health-card, and also ask patients if they prefer a different name be used in your clinic. If so, make sure to document their chosen name.

  4. Ask all patients to share their pronouns.

    Like gender identity, you cannot assume a person’s pronouns based on how they look or based on their gender identity. For example, some gender non-binary people choose to use she/her or he/him, and some people use different pronouns in different settings. By asking all patients what their pronouns are you will avoid making assumptions and it will quickly feel like your new norm. Start by introducing yourself and sharing your own pronouns, then you can ask your patient if they feel comfortable sharing theirs.

     

  5. Ask about body parts instead of assigned sex.

    Within society, gender and sex are often conflated, meaning that ideas about sex are hardly ever gender neutral in social institutions. Many people do not identify with the sex that they were assigned at birth. Instead of asking people about their assigned sex, ask people to identify the specific body parts that they have or that are relevant to their healthcare.

  6. Don’t make assumptions about sexual orientation or sexual practices.

    Sexual orientation is different than gender identity. A persons gender identity does not dictate or limit a person’s sexual orientation. Knowing a person’s sexual orientation does not tell you what sexual practices that they engage in, just as knowing what sexual practices that a person engages in does not tell you their sexual orientation. Avoid making any assumptions about a patient’s sexual orientation and their sexual practices. If having this information is necessary for providing certain aspects of health care, then, inform patients as to why having the information will be helpful and ask them if they are comfortable sharing.

     

  7. Review (and possibly revise) your patient intake form.

    Your intake form is one of the first interactions that a patient has with your practice. Thoughtful design can ensure that you share and obtain the necessary information that you need to run your business and provide quality, gender-inclusive healthcare. Review your intake form in relation to the information and the suggestions listed above. Do the questions that you ask on your intake form make assumptions about gender identity or equate gender with certain body parts? What questions might you consider adding? Are there questions that can be removed or rephrased? Reflect on the reasons that you ask each of your questions and consult with others if you need advice or if you are struggling with revisions. 

    Like any big change, moving toward gender-inclusive pelvic pain healthcare will come with lots of learning and you may have lots of questions. Changes in your practice might also come with questions from others, including patients and colleagues. Taking a few moments to explain your approach to providing care or to clarify the questions that you ask in your intake form shouldn’t take long, but it will make a big difference for Trans people who engage with your practice and who see themselves reflected in your day-to-day operations. Many people and organizations have put tons of thought into developing gender-inclusive healthcare - you do not need to reinvent the wheel! Remember that not everything that you do will work for every patient - be open to feedback, try new things, and know that you are engaging in life-saving and life-affirming work. More resources must be put into learning more about the unique ways that pelvic pain impacts Trans folks, about effective treatment, and effective support. People with pelvic pain carry huge amounts of knowledge related to health, survival, coping, healing, and resistance. Within your work, centre the knowledge of people living with pain. Continue to acknowledge that we all have something to learn from one another as we reimagine what it means to live with pelvic pain, and in some cases, how to live without it.







 

Posted by IPPS Admin on February 21, 2019, 12:00AM