By: Jean Johnson for Fibroids1When it comes to genitalia issues conversations get hushed and voices drop to a whisper – sometimes even between physicians and patients. Not only is there embarrassment when the subject turns to sex, there has been misunderstanding.
| Take Action |
Tips on Managing Chronic Vulvar Pain
Appreciate the idea that while any condition associated with the genitalia will bring emotional distress, chronic vulvar pain is considered a physical condition apart from purely psychological origins.
Find a medical specialist who is up to date on the syndrome and its treatment.
Know that traditional surgical approaches are currently considered a last resort.
Topical estrogen creams, tricyclic antidepressants and anticonvulsants can provide some relief.
Promising biofeedback studies in 1995 and 2001 have shown well over 80 percent success rates.
Women undertaking biofeedback can expect some medically supervised training sessions along with a portable device that allows them to practice their exercises at home.
If you would like support, information about clinical trials or just general information, the National Vulvodynia Association and the Vulvar Pain Foundation are good resources.
|
This has particularly been the case surrounding chronic vulvar pain, a condition of unknown origin that strikes women between the ages of 20 and 60 – a problem that many physicians have historically dismissed as psychosomatic.
More recently though, over the past decade experts are increasingly confirming that chronic vulvar pain (also known as vulvodynia) is a physical condition that is not in women’s heads at all. More, the syndrome can be treated successfully with biofeedback in more than 80 percent of cases.
Physicians Puzzled, Patients Frustrated
Marek Jantos, M.A. Ps.S., an Australian psychologist who compiled the following quotes characterizes chronic vulvar pain as a syndrome that causes sufferers “burning, stinging, irritation, rawness and pain” and can be “physically and emotionally disabling.
“The patient with the problem of vulvar burning, itching, irritation, dyspareunia [painful sexual intercourse] has been the source of great frustration for years,” a gynecologist told Jantos. “I suspect that most of us have had more than one patient who has left our offices as uncomfortable as when she entered, probably to seek another solution from another gynecologist.”
And according to another physician Jantos polled, “The problem is not with the diagnosis of this syndrome, it is with determining the right treatment. I do not think we have any good ones. The symptoms wax and wane almost without regard to what we do.”
From the side of the women who suffer, Jantos’ account is similar although fraught with the anguish that living with chronic vulvar pain brings.
“I would in this lifetime, like to have intercourse with my boyfriend. Before vvs [vulvar vestibulitis syndrome, a common type of chronic vulvar pain] I had quite an active sex life… Mentally I cannot handle it anymore. I am a basket case. As I write this, I am sobbing, just wanting an end to this. I am desperate.” (June 2000)
“I have been experiencing this stinging/burning pain now for 10 years. I’ve been tested for everything, and my tests always come back negative. My pap smears are all normal, my hormone levels are normal, my pH is normal, and all of my blood work is normal. The problem is I am in so much pain… Burning is much greater around my period. I have been to several doctors, only to find that they keep misdiagnosing me. It is so frustrating! The last doctor I went to was understanding at least. But I brought in many factual articles on vulvodynia and the symptoms and basically said, ‘Look this is what I have!’” (July 2000)
History, Freud and Chronic Vulvar Pain
Prior to Sigmund Freud’s popularity, the medical literature in the 1800s and early 1900s attributed the syndrome to organic, physical causes. Once the radical new idea of psychoanalysis swept through Western culture, however, Jantos writes that there was “a very notable shift occurring away from a search for physical causes of pain to an overemphasis on the possible role of conscious and unconscious psychological and emotional variables. Medicine became generally dismissive of somatic causes and instead relegated sexual pain to the realm of hysteria and the care of psychiatry.”
In 1954, for example, a medical article Jantos cites states that the female patient with chronic vulvar pain “must be helped to see for herself that hyperesthesia [pain] is a fiction and that the pain is of her own making.”
Worse, as late as 1978 Jantos found similar ideas in the literature that branded women who refrained from intercourse because of their symptoms, “manipulative.” He also found authors who argued that, “The patient often pleads for help but is absolutely resistant to any suggestion that her symptoms might be psychologic in origin.” And that these patients “manifested signs of neurosis, dependant personality, guilt feelings, emotional liability, while denying psychologic difficulties… these patients received a secondary gain from their symptom complex, i.e., a reason not to engage in sexual activity.”
So much for the days of the entrenched patriarchy, although Jantos points out that sadly these dated sentiments “still reflect the view of many professionals today.”
Indeed, as historians know, it takes three generations for meaningful societal change – and the medical profession is known for its conservatism. Clearly as the quotes from women Jantos canvassed shows, many still feel much maligned by not only chronic vulvar pain itself, but also the lack of response they get from the medical world.
“I’ve had this problem for 20 to 30 years depending on which symptoms you look at. The pain is stealing so much of my life away. I’m feeling as though there is absolutely nothing that can be done about it. I have found that I am encouraged to know that I am not the only one with this pain. All the doctors and pain clinics over the years have been of no help. My husband recently died, and I have such regrets that I was not more sexually responsive to him for so many years because of my pain. I’m just watching my life slip away.” (July 2000)
“I was convinced that I was the biggest freak around. It soon steeped into every aspect of my life. No matter what successes I had achieved, I still felt I was faking being female, my self-esteem was down to zero. And as the years rolled by, I felt like only half a woman, then a quarter woman, then not like a woman at all. Over the years, I had buried it deeper and deeper until all my self-esteem had eroded away.”
Understanding Emotional Issues Associated with Chronic Vulvar Pain
At least more women suffering from chronic vulvar pain today have enlightened specialists like Jantos and his American colleague Howard Glazer, Ph.D. Clinical Associate Professor at Cornell University Medical College, New York Presbyterian Hospital, taking the lead. Before we talk about the benefits of biofeedback, though, Jantos has some insightful comments on why all the confusion over the syndrome in the first place.
He explains that human sexuality itself is a complex issue that that the secondary sexual characteristics of females and males “play a crucial role in the psychosocial development of body image.” Consequently, anything that interferes with “self-esteem and the experience of pleasurable fulfillment in sexual intimacy [like] symptoms of pain, irritation or observable lesions affecting the sexual parts of the body are likely to give rise to considerable anxiety.
“In considering the issue of chronic vulvar pain,” Jantos continues, “it is important to acknowledge that to women the vulva can represent an area of the body that is the source of pleasure, pride and procreation. Yet, to some it can be the source of guilt, embarrassment, pain, anxiety and the focus of frequent physical examinations which for some my seem humiliating and demeaning.”
Jantos adds that on top of all that, “Even in the context of cultural sexual openness, many patients are afraid to discuss with their doctors problems relating to sexual pain.” And also that even when women do confide in their physicians, “chronic nonmalignant pain syndromes of the vulva can be difficult to assess and difficult to treat, particularly when the symptoms reported occur in the absence of any abnormal physical findings or are out of proportion to any visible pathology.”
Finally he points out that chronic pain of any kind “frequently leads to emotional exhaustion, anxiety, depression, and complications in sexual functioning.” He emphasizes how completely debilitating these convergences can be in women with chronic vulvar pain. “The incidence of depressed affect and even suicidal ideation was very high among the vulvar vestibulitis patients.”
Jantos cannot say enough, however, that all the above emotional problems “are all secondary to the primary problem of chronic sexual pain… It would be most unfortunate if these symptoms were seen as playing a key role in the etiology of vulvar pain and if psychiatric management was seen as the appropriate primary treatment modality.”
Clearly, Jantos thinks misunderstanding women with chronic vulvar pain to the degree that they become suicidal is a travesty, and one he is working to circumvent.
Biofeedback Can Help
A number of researchers working on chronic vulvar pain have studied the role of biofeedback in treating the syndrome. The results are highly encouraging.
According to Jantos, who draws on data compiled by the American College of Obstetricians and Gynecology, biofeedback “can produce total, or significant reduction of symptoms, in more than 80 percent of patients.”
Electromyographic biofeedback works by giving women signals on the extent to which internal contractions, or pelvic floor exercises they perform, are working to strengthen their muscles – pelvic floor muscles that do not behave normally when chronic vulvar pain is present and instead tend to spasm and hold tension. By using biofeedback, patients can learn to recognize when patterns become abnormal and develop confidence in their ability to normalize them.
Studies began in the early 1990s at Cornell University Medical College with results published in a 1995 issue of the Journal of Reproductive Medicine. Of the 33 women who engaged in medically supervised pelvic floor exercises with biofeedback for 16 weeks, 83 percent reported decreased pain. Also 22 of the women who had abstained from sex over the prior 13 months resumed intercourse – and a six month follow-up indicated that the therapeutic benefits were ongoing.
In 2001, the results of a second study were again published in the Journal of Reproductive Medicine. Of 29 women in the study, 20 became sexually active, and only five of the women showed no significant improvement.
In the judgment of the investigators, “Electromyographic biofeedback of pelvic floor musculature is an effective approach to vulvar vestibulitis.”
