A few weeks ago, I connected with Noa Fleischaker, the founder of Tight Lipped. This organization started as a podcast in 2019, and has grown to reach over 3000 people from 58 countries around the world. Tight Lipped is all about supporting people who have been struggling with vulvovaginal pain conditions– problems like vulvodynia, vestibulodynia, pelvic pain, painful sex, and more. They share stories to build community, normalize often very private problems, and advocate for better care. They recently published their first Zine, “Opening Up,” and it is a beautiful compilation of art and stories from people who have dealt with vulvovaginal pain conditions. I received my copy last week, and it is in our waiting room as I type this!
I hope you enjoy this interview and connect with Noa’s message! If you would like to support the work of Tight Lipped, please visit their website! They also have events, meet-ups (with one coming up this week!!), workshops, and book clubs! So check it out and connect with this amazing group!
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. (Readers: Here’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/
SARA 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.