Understanding Vulvodynia

[Heather34]

Hi all. In a recent Blog, Dr. BatSheva describes not only the condition of vulvodynia but also an excellent new treatment which is offered at Maze.

//mazewomenshealth.com/blog/2017/01/19/understanding-vulvodynia/

Dr. BatSheva writes: “Our center is currently using a laser technique for primary neuro-proliferative Vestibulodynia. Because this treatment was used so successfully in Europe as an alternative to surgery, we sent staff there to be trained. We are thrilled to be able to offer it to women who until recently we believed needed surgery.”

So importantly, she also describes how important it is to find a practitioner that understands vulvodynia. She writes: “The most important thing for you to be conscious of, is finding a practitioner with lots of experience treating vulvodynia. They are the only ones who will be able to differentiate between underlying causes and they will be the most likely to solve your problem.”

This is so, so, so important. One of the things that I found most comforting about Dr. Pacik was that I had finally found a doctor who understood what I was talking about in terms of my sexual pain. I was previously diagnosed with vulvodynia by another doctor when I did not have it and actually had and was successfully treated for vaginismus. Like Dr. P, Maze actually gets it and are a group of awesome practitioners who understand and will be able to differentiate between the diagnoses and treat the condition.

Dr. Pacik has written about vulvodynia in the past: “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.”

Another Forum member also writes:
“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.

Also, a successfully treated Maze patient has also written:

“After realizing I had vaginismus, I didn’t seek out treatment for a few years. I thought there was a chance it might go away on its own, which of course it didn’t. I found a physical therapist who had written a review for [a] dilator set on vaginismus.com. Her office was near me and I felt she must be knowledgeable about the condition if she was familiar with the treatment kit. [Ed. note: Vaginal dilators in graduating sizes are often used in the treatment of vaginismus to encourage the muscles to relax and allow for penetration.]

Unfortunately, I was misdiagnosed. She believed I had localized provoked vulvodynia, a much less treatable condition. I was terrified. She told me I needed to see a specialist to prescribe me a topical cream, so I went to Maze Women’s Sexual Health in Manhattan where I had my first appointment with Tara Ford, a physician assistant specializing in female sexual medicine. Upon her examination, she determined that in fact, I only had vaginismus, not localized provoked vulvodynia. I was so happy, after thinking my treatment process was going to be long and painstaking. I knew since vaginismus is so treatable this wouldn’t be the case. While treatment for vaginismus is by no means easy, it is certainly doable.”

Again, I think it is so extremely important that Maze understands the difference between vaginismus and vulvodynia. I also think this new treatment for the cases of vulvodynia sounds so, so awesome. As always, I welcome your comments and feedback here.

[jen123]

I have not seen any testomonials on this laser procedure which is not very encouraging. (LLLT)

[Nicole Tammelleo, MA, LCSW]

Hello Jemn 123,

Please feel free to give us a call, we are happy to speak more about it with you. As this forum is mostly for vaginismus, most of our vulvodynia patients are not active on this site.

[mazemelissa]

Hi Jen123,

LLLT treatment is specific for neuroproliferative vestibulodynia. We don’t use that laser for vaginismus treatment.

Maze has treated about 10 patients with LLLT since being trained in 2017, so the treatment is still new to our center. However the laser has been used in Israel for this condition for many years with great success.

We have seen a really good response, about a 60-70% improvement.

Treatments are twice weekly. After 6 treatments patients should see improvement. If there is no improvement after 6 treatments then we consider that patient a treatment failure. If there is improvement after 6 sessions, then we complete the protocol of 12 sessions.

Hope that helps,
Melissa