This is such an important subject that I would like to share with you some of the posts, as well as my responses, from our VaginismusMD Forum on this topic.
From Heather our Moderator: Prior to finding Dr. Pacik, I remember visiting several different ob/gyn doctors. I would describe my symptoms of increased pain with intercourse and they continuously diagnosed me with vulvodynia. I asked them if I had vaginismus as I had researched the condition and my presenting symptoms and they continuously brushed this off and returned to the diagnosis of vulvodynia. For those ladies reading this post, how many of you were also misdiagnosed with vulvodynia? Also, Dr. P, can you give us the clinical difference between vaginismus and vulvodynia. How many of your patients treated also had vulvodynia in addition to vaginismus?
From Dr. Pacik: Currently, the default diagnosis of sexual pain is vulvodynia. That means that when a physician is faced with a patient who is unable to have intercourse because of pain, the diagnosis is automatically vulvodynia or “vestibulitis” Very few clinicians think of asking about vaginismus and therefore most of my patients have been misdiagnosed as suffering from vulvodynia, when in actual fact the correct diagnosis was vaginismus. This is doubly unfortunate because not only is there a misdiagnosis, but also failure to treat. Of the many conditions responsible for sexual pain, vaginismus is the easiest to treat.
The word ODYNE means pain. Therefore vulvodynia is pain anywhere in the vulva. Vestibule means room and refers to the area just before entry into the vagina, inside the labia. This potential space (just prior to entry) is called the vestibule. Pain here is vestibulodynia, and the old term is vulvar vestibulitis syndrome, or vestibulitis for short.
When I test my patients with a cotton tipped applicator, “Q-tip test”, about 1/2 test positive for either or vulvodynia and/or vestibulodynia, These are mostly “false positive ” tests in that the woman does not have this condition, but rather it is a manifestation of fear and anxiety to penetration. It is “too close for comfort”. Many of my more severe vaginismus patients are unable to differentiate between pain and anxiety when tested and have a marked aversion to be touched in these areas. To date I know of only one patient who had true associated vulvodynia and she is the one whose article appeared in the November 2011 issue of Cosmo. I would love to hear from others who were misdiagnosed. I have enough data that this would make an excellent scientific presentation. Let me know if you were falsely diagnosed with either or both of vulvodynia and/or vestibulodynia.
From User 1: I was diagnosed with “vulvar vestibulitis,” “vulvodynia,” “vulvar pain syndrome”… you name it. To be fair, at least those are somewhat in the ballpark compared to “Just relax and connect with your partner” (yes, actual quote).
From User 2: Hello, I am very new here. I was diagnosed with vulvodynia almost 3 years ago. No one or nothing has helped my condition. At the time, I got extremely frustrated and felt less then a woman. I have given up hope and chose to not even think about it anymore. I have noticed how my husband and I are living as if there is nothing wrong (maybe to not deal with a problem neither one of us can change). My question is, “Can Botox work on patients with vulvodynia?” Thank you.
From User 3. I’ve never considered myself to have vulvodynia or vestibulodynia, but I can see how this pain (which was purely down to anxiety) could be misinterpreted if a doctor did a gyn exam. While I was self-diagnosed, I did mention my vaginismus to a nurse once and she thought I was talking about vulvodynia or vestibulodynia (I can’t remember which) and seemed unaware of vaginismus. She suggested I see the nurse practitioner who could give me some numbing cream (I didn’t go to get this as I had a feeling it wouldn’t do much!). On another occasion I saw my doctor to ask if there was anything she could do or a specialist she could send me to regarding my vaginismus. I told her I was already working with dilators, although I had been working with them for about 4 years at the time and had not made sufficient progress . . . she said that as I was already doing that there was nothing else she could think of. It therefore took us (after a year or so of deliberating and saving) to take a trip over to the states from the UK to have a shot at proper treatment. Despite the NHS in the UK, we still had to take out a loan for the treatment, which we had to find by ourselves. Thank goodness we could and did!
From Dr. Pacik: There is so much confusion about vulvodynia and vestibulodynia (old term vestibulitis). Testing is done with a cotton tipped applicator (Q tip test).If the patient has any reaction to this testing it is scored as a positive test. Patients, who have severe vaginismus, usually have difficulty differentiating between pain and anxiety to testing. For most the testing is “too close for comfort”. The aversion to being touched in the pelvic area makes proper testing all but impossible because of the high anxiety levels associated with this testing, especially in the vestibule just outside the vagina. These are then “false positive” tests and mean nothing.
Associated vulvodynia or what is called (provoked) vestibulodynia is actually RARELY associated with vaginismus and is just one more misdiagnosis in the workup for sexual pain.
From Heather our Moderator: Hi Dr. Pacik. This is actually exactly what happened to me. In 2008, a couple of years after our 10/06 wedding and still unable to achieve intercourse, I went to see a gynecologist. When she attempted to examine me, I felt excruciating pain at even the outside area. She immediately stopped the exam, diagnosed me with vulvodynia, and said I would have to visit a physical therapist before she would ever try to examine me again. I had brought research about vaginismus to the appointment and showed it to her plus explained all of the symptoms that I had and she would not even read it and just dismissed it saying that I had vulvodynia. I did, in fact, have vaginismus and was one of these patients who couldn’t differentiate between pain and anxiety with testing and I was cured within 1 week of receiving this treatment for VAGINISMUS.
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