Vulvodynia is pain of the vulvar area which is currently described by the International Society for the Study of Vulvovaginal Disease as “discomfort, most often described as burning pain, occurring in the absence of relevant visible findings or a specific, clinically identifiable, neurologic disorder”. Meaning, in layman’s terms: there doesn’t seem to be a specific reason found for it occurring. Research is ongoing and there are several theories developing, but so far no single or even regular grouping of causes have been identified.
The number of females who experience vulvodynia, depending on the study, has ranged generally from 5-19%.
While it is most often a burning pain, it can also be throbbing, itching, pain during intercourse, irritation or rawness, stinging, and other painful sensations.
Vulvar pain can be localized or at various points. It can cause entering the vagina or even touching the vulva to range from uncomfortable to unbearable.
Vulvodynia can be short term or chronic.
Due to no known, set origin treatment methods are also widely varied and hit-or-miss in effectiveness. Some involve physical therapy, psychiatric care and therapy, medication for pain and topical anesthetics, anti-depressants and anti-convulsants to address potential nerve pain, local injections of various medications, dietary changes, clothing and soap changes, hormonal treatments, and more.
Given these facts it’s easy to see how this can interfere with many females’ sexual lives and for some even daily non-sexual activities.
It can be not only physically painful but also emotionally distressing for both the female effected and for any partner(s).
I can speak on vulvodynia’s effects to an extent personally.
At first, there was rare and minor discomfort during sex and nothing that was enough to cause concern. It was the type of thing one associates with being positioned just wrong or perhaps not well enough lubricated that time.
Then it became slowly more common and intense during any insertions into my vagina… eventually the sensation was that of being burned by acid when anything even slightly entered me. It stopped any type of sexual encounter of that type between my partner and I and I decided it was necessary to pursue help from a gynecologist.
I was given pelvic examinations a couple of times, by two different doctors, which were excruciating. As each time no irritation or unusual discharge could be found and the STD testing they did each time came out negative, I was told to come back in a few months if I still had pain. They couldn’t see anything wrong with me, so I was brushed aside so to speak.
On my third visit to the gynecologist, the second one pelvic exam doctor, I had expected more testing or another pelvic. I was told frankly and directly at a sit-down office meeting that they did not know what was wrong with me and they couldn’t do anything for me. He then got up to end the appointment. I stayed seated.
Through pure stubborness on my part he eventually offered to sent me to both a psychiatrist to try and find out if my pain was caused by a mental health issue and to another gynecologist that specialized in vaginal pain.
The psychiatrist referral never came through, but the gynecological one did. I was given a pain-mapping procedure where the doctor uses a swab and touches various areas of the vulva and vagina to find where exactly the pain is occurring. Mine was not deeply internal so he chose not to subject me to an internal ultrasound due to the extreme pain any insertions caused. I was put on an anti-depressant used for nerve pain and assigned a course of 5 weeks of daily lidocaine application, with the plan for physical therapy to be started. However, I had to move states shortly after and could not follow with this gynecologist further. He assured me that at that point I would have his files to continue forward with care at my new doctor.
The trip to that specialist helped to such an extent I cannot say emotionally. With no diagnosis and essentially no treatment prior to him I was at a loss as to why I was experiencing such intense pain, concerned it may be something along the lines of cancer potentially, and I was frustrated with my body and my sexual limitations with my partner. But now, finally, I had a name for what was wrong, vulvodynia, and a doctor who was completely honest about the facts concerning it but had begun a course of treatment.
Given the word, I was able to better Google. I found other females experiencing the same and similar pains; I found sites filled with information. I was no longer completely blind as to what was going on with me. Still concerned, still morbid worries, but no longer at a complete loss and alone.
Moving states and file-transfer issues have started my treatment from square one again, but thankfully with another gynecologist who is motivated to help me find a cure if possible. A doctor who has sent me for an external ultrasound to rule out more possible causes and who has expressed full willingness to refer me to a specialist again if the basics he wants to cover don’t find anything.
Thankfully, my ultrasound has come back just fine.
But it has now been twenty-one months, a year and nine, that a part of my body has been only a source of pain with no explanation as to cause, no set and reliable course of treatment known, and has hindered my private and partnered sexual life. It is frustrating. It is scary. It is something awkward to explain to new potential lovers… “No, I can’t have anything involving my vagina. Yes because of pain. No, I don’t know why. Yes, I promise it is not due to infection as I’ve been repeatedly tested”.
If you are female and experience unexplained vulvar pain or are involved with one who does, know you are not alone. Push for testing to rule out what can be. Don’t let yourself be set aside medically. Seek out support groups and information in hard copy and online.
Try to be understanding and accepting of yourself or your partner. Patience is hard, especially when it comes to such an important part of one’s identity, physical functioning, relationship interactions and how or if the cause will be resolved.
It has a name, many of us experience it, and help can be pursued. Again, you’re not alone.