By Stephanie Prendergast, PHRC Cofounder
As many as 28% of women experience painful sex at some point during their reproductive years and that sucks. Knowledge is power and May is Pelvic Pain Awareness Month so we want to provide women with useful information about the three most common diagnoses associated with painful sex: vulvodynia, vaginismus, and vesitbulodynia. Differentiating between these diagnoses is important! Unfortunately these diagnoses are often incorrectly used interchangeably, hindering a woman’s treatment plan. Effective and efficient treatment plans need to be individualized and pelvic floor physical therapy is almost always a necessary component of a treatment plan for painful sex. While there is some overlap between the vulvodynia, vestibulodynia and vaginismus there are also distinct differences. Let’s break it down.
1. Vulvodynia: provoked or unprovoked pain anywhere in the vulva: mons pubis, clitoris, labia majora and labia minora, vestibular bulbs and vulval vestibule, urethra opening, vaginal opening, and Bartholin’s and Skene’s glands.
2. Vaginismus: involuntary pelvic floor contraction that interferes with penetration
3. Vestibulodynia: provoked or unprovoked pain isolated to the vestibule, often characterized by significant redness in this area and tissue atrophy
10 Things you need to know about Vulvodynia, Vestibulodynia, and Vaginismus
- Vulvodynia and vaginismus are also classified as primary or secondary
- Primary vulvodynia or vaginismus: symptoms present from first attempt at penetration
- Secondary vulvodynia or vaginismus: symptoms present after pain-free periods of insertion
- Vaginismus is associated with pelvic floor myalgia (pain) and tightness. A common symptom of vaginismus is vulvovaginal pain which can qualify as a subset of Vulvodynia. However, women with vaginismus can have pain isolated to the pelvic floor muscles and have normal vulvar sensation (no vulvar or vestibule pain) and then this is not technically vulvodynia.
- Studies show that 20 – 90 % of women with vulvodynia and vestibulodynia also have pelvic floor muscle hypertonus/myalgia; since this number is not 100% it is important to note that a percentage of women can have vulvodynia and/or vestibulodynia without having pelvic floor dysfunction. It is more common to have pelvic floor dysfunction and vulvodynia together then to have vulvodynia in isolation.
- It is important to perform a visual inspection of the vulva and vestibule for redness (also called erythema) and tissue integrity (or lack of integrity, called atrophy,) and to identify tenderness with the Q-tip test to help determine if the vulva and/or vestibule tissue is involved.
- A pelvic floor physical therapist is specifically trained to examine the pelvic floor muscles for tenderness, length, strength, and a woman’s ability to voluntarily contract her muscles.
- Visual inspection of the vulva and vestibule, the Q-tip test to the vestibule and vulva, and manual examination of the pelvic floor muscles and vulvar connective tissue will give the provider the needed information to determine which structures are involved.
- Vestibulodynia is a subset of vulvodynia because it involves pain in a specific anatomic vulvar region but excludes pain symptoms in parts of the vulva outside of the vestibule itself.
- The vestibule is a structure sensitive to estrogen and testosterone. Vestibular tissues can become compromised in response to hormonal insufficiencies and if this is the case systemic and topical hormonal therapies may need to be considered to restore tissue health. Hormonal insufficiency can be caused by medications that influence hormones such as oral contraceptive, acne medications, and medications for diseases such as endometriosis. Breastfeeding and menopause affect hormones and therefore also affect the vestibule.
- Not all women with vulvodynia have vestibulodynia. For example, women can have symptoms of vulvodynia characterized only by clitoral pain, interlabial itching, and/or urethral pain. However, many women with vulvodynia also do have pain at the vestibule. If a woman has pain in the vestibule and also the other structures of the vulva it is appropriate to describe the symptoms as vulvodynia and vestibulodynia.
- Vaginismus can exist without vulvodynia or vestibulodynia.
Why the Differential Diagnosis Matters
In 2015 the International Society for the Study of Women’s Health, the International Pelvic Pain Society, the International Society for the Study of Vulvovaginal Disease and the National Vulvodynia Association came together to agree on updated vulvodynia terminology to better serve women with these pain disorders. The group was able to conclude from the research that there are seven known causes of vulvar pain and nine associated causes, thereby eliminating the former definition as “idiopathic vulvar pain of unknown cause.”
Thank goodness because it is not reassuring for anyone to have a diagnosis of ‘unknown cause.’ We do know a number of causes of vulvodynia and it’s important that we get all medical professionals up to speed on this.
The consensus publications were a major step forward for women! To read one of the publications please visit the NVA website here. The different causes require different treatments and this is why the diagnostic label matters. Examples are often the easiest way to make sense of this.
Real women, real cases of painful sex:
- Leah is 30 years old. Her vulvar pain developed following multiple urinary tract infections that were appropriately treated with antibiotics but unfortunately led to a number of yeast infections. After her last yeast infection was cleared interlabial itching persisted and intercourse was painful. The evaluation revealed pelvic floor hypertonicity, tenderness and connective tissue changes that were likely caused by infections. She did not have tenderness at the vestibule and did not have vestibulodynia. Musculoskeletal dysfunction, inflammation, and the systemic infections were primary causes of Leah’s vulvar itching and painful sex. Her treatment plan consisted of pelvic floor physical therapy and medical interventions to stop the urinary tract infection and yeast infections.
- Michelle is 16 years old. Six months ago she began using Accutane for skin issues and was prescribed oral contraceptives as the standard precaution against pregnancy while on this medication. She began to experience insertional pain with tampon use, a symptom she never had before. She bought dilators online to try to treat this symptom and felt persisting pain after each use of the dilators for about 24 hours. Her examination revealed red and fragile vestibular tissues and pelvic floor muscle hypertonus and pain. Her initial treatment plan consisted of stopping the oral contraceptives and acne medication and dilators. Her doctor prescribed her a topical estrogen/testosterone cream. After three weeks of using the cream the tissue was much healthier but she still had pain with insertion, which was confirmed to stem from the pelvic floor muscles. She recovered the rest of the way with pelvic floor physical therapy and home dilator use. Because her vestibular tissues were initially compromised, any insertion would provoke pain here and therefore the vestibule needed to be treated with topical hormonal medications before pelvic floor physical therapy and dilators would be therapeutic. The sequence of treatment matters and sometimes certain therapies need to wait until other issues are resolved. Her vestibulodynia was caused by hormonal insufficiencies from both the Accutane and the birth control pills. Sex was painful because of the vestibulodynia, pelvic floor hypertonus, pain and vulvar connective tissue dysfunction.
- Tracey is 18 years old. She tried to engage in sex with her boyfriend and they were unable to achieve penetration. After multiple tries Tracy went to her doctor and the physician had difficulty inserting the speculum due to pelvic floor tightness. They made some progress with a pediatric speculum. Tracy was diagnosed with vaginismus and was referred to pelvic floor physical therapy and instructed to use vaginal dilators at home. After three months she was able to have pain-free intercourse. Her primary cause of painful sex was musculoskeletal.
Take Home Message
Painful sex is common and very rarely random. Skilled medical providers can almost always find causes and each woman’s treatment should be dictated by the underlying differential diagnosis. If you have painful sex and you are not sure why, a doctor specializing in pelvic pain and a pelvic floor physical therapist should be able to help! On average, women are misdiagnosed by an average of five to seven providers before finding the help they need. Everyone can help raise awareness by kindly informing past providers of up-to-date information on the topic. One way could be to share the consensus paper.
If you feel like you are stuck in your treatment plan it can be useful to get a second and third opinion from other specialized pelvic floor physical therapists and doctors. If you live in the San Francisco Bay area, Los Angeles or New England give us a call, we are happy to help!
How to find doctors and pelvic floor physical therapists familiar with pelvic pain
Are you unable to come see us in person? We offer virtual physical therapy appointments too!
Due to COVID-19, we understand people may prefer to utilize our services from their homes. We also understand that many people do not have access to pelvic floor physical therapy and we are here to help! The Pelvic Health and Rehabilitation Center is a multi-city company of highly trained and specialized pelvic floor physical therapists committed to helping people optimize their pelvic health and eliminate pelvic pain and dysfunction. We are here for you and ready to help, whether it is in-person or online.
Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. The cost for this service is $75.00 per 30 minutes. For more information and to schedule, please visit our digital healthcare page.
In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page.
PHRC is also offering individualized movement sessions, hosted by Karah Charette, DPT. Karah is a pelvic floor physical therapist at the Berkeley and San Francisco locations. She is certified in classical mat and reformer Pilates, as well as a registered 200 hour Ashtanga Vinyasa yoga teacher. There are 30 min and 60 min sessions options where you can: (1) Consult on what type of Pilates or yoga class would be appropriate to participate in (2) Review ways to modify poses to fit your individual needs and (3) Create a synthesis of your home exercise program into a movement flow. To schedule a 1-on-1 appointment call us at (510) 922-9836