Help for Vulvodynia; Maybe Also Fibromyalgia, Cystitis, IBS

Some years ago I treated a woman named Sherry for suicidal depression. Sherry's problem was extreme pain in the vulvar area. The pain waxed and waned, but when it was on, walking, sitting, movement or contact with clothing or seating triggered overwhelming stabbing, shooting, burning pain. Sherry described it as feeling like someone was putting a cigarette out on the skin in the vulvar area.

Sherry's husband was impressively understanding and compassionate. Even though their sexual relationship had come to a total halt, their marriage remained strong. But Sherry's work was suffering. The pain was often too intense for her to be able to concentrate on her lectures in her work as a college professor. And Sherry felt terrible about how short-tempered the pain caused her to be with her three energetic young children.

Feeling increasingly crippled by the vulvodynia, Sherry sought out doctor after doctor for help. Most looked baffled.

Several implied that the pain was a way to get out of having sex with her husband. Others said it was "all in her head." These physicians' 'blame the victim' responses added to the emotional trauma caused by her disorder.

Other physicians suggested that Sherry undergo major surgery to remove the labia where the pain seemed to reside. Eventually Sherry followed this advice. A surgeon removed the areas of her labia where there were specific highly pain-sensitive red dots. After the surgery, the pain returned.

I'm a psychologist. I do psychotherapy. What could I do for an intractable physical pain syndrome?

As the saying goes, to a person with a hammer the world's a nail, so I began by doing what therapists do best, that is, asking questions and listening. I took Sherry's pain complaints seriously, asking her to describe as specifically as possible exactly what the pain felt like and when it seemed to occur.

The second thing I did was to map with Sherry an antidepressant strategy. People cease to feel suicidally depressed when they feel hope or have a plan of action for remedying their situation. I committed to Sherry that I would work together with her to somehow or another find a cure. We would use our therapy sessions to brainstorm together on where to turn and what paths to take.

One of our first strategies involved my organizing a meeting of urologists and ob/gyn's in the medical building where I work. A half dozen doctors volunteered their time to join the breakfast gathering. They were sympathetic, but no one had any ideas of how to proceed.

Another idea occurred to me. The spouse of one of the other psychologists in my office suite was a medical detective, a PhD researcher named Clive Solomons. Dr. Solomons had solved many medical mysteries in his illustrious career. Maybe Sherry and I could entice him to focus on her problem?

We succeeded, in large part because of a fluke...or was it a miracle?

From my prior intensive therapeutic questioning, I had been able to describe in detail to Dr. Solomons the description Sherry had given me of her pain. He seemed to be mildly interested, but mainly was busy with other research projects.

Then several weeks later Dr. Solomons went hiking in the mountains (we live in Colorado). He brought along a book about native medicinal plants, and one plant he'd never seen before caught his attention. The book's description of what happens if you put this particular plant in your mouth sounded almost identical to the description I had given him of Sherry's pain. Could the underlying pain mechanism be the same? Now Dr. Solomons became excited about researching vulvodynia, which gradually became the primary focus of his work for the remainder of his research career.

Dr. Solomons wondered if Sherry had experienced prior damage to the vulvar tissue, leaving it vulnerable to chemicals that had been present before in her body but became problematic only after an insult to the vulvar tissue. The pain had begun shortly after Sherry had given birth to her youngest son. Maybe something in the delivery had been problematic? Sherry said yes, and that she had been catheterized afterwards. The catheter in turn had been painful. Dr. Solomons tested Sherry for allergic reactions to the material the catheter was made of. Her skin definitely reacted negatively. Another clue!

Dr. Solomons hypothesized that sensitive or injured tissue in the vulvar area can interact with high oxalate levels (similar to the chemicals in the offending mountainside plant) to produce the painful sensations of vulvodynia.

To test this hypothesis Dr. Solomons launched detailed studies of the rise and fall of oxalate levels in Sherry's urine at various times of the day and after eating various foods. Sherry by now was a full partner in the research project, meticulously recording her oxalate levels and performing most of the mathematical calculations for assessing their results.

Eventually Dr. Solomons suggested that Sherry avoid foods known to be high in oxalates.

Oxalates generally are especially present in the colorful fruits and vegetables that we think of as healthy foods. Green like in celery or spinach, red as in beets or raspberries, oranges, yellow as in peppers, dark blue as in blueberries, that is, the colors and foods that look yummy and are supposed to be nutricious, signal high oxalate levels. Dr. Solomons eventually in fact discovered that many women began having problems with vulvodynia after launching what they thought was a "healthy" diet, filled with celery and other "healthy" foods.

To aid with minimizing the oxalates, Dr. Solomons suggested and tested over-the-counter calcium citrate pills.

The combination of diet and calcium citrate clearly helped Sherry.

Sherry eventually was cured. It wasn't overnight, but the diet plus calcium citrate regime gradually reduced the pain and eventually eliminated it totally.

As to the depression? Our anti-depressant strategy worked 100%.

Meanwhile, Dr. Solomons began working with other women who heard of his research from the paper Dr. Solomons, Sherry's ob/gyn Herzl Melmed, MD, and I published jointly on Sherry's case in the Journal of Reproductive Medicine. The paper, which was published almost exactly twenty years ago in December of 1991, was entitled, "Calcium Citrate for Vulvar Vestibulities: A Case Report."

Much has happened in the intervening twenty years, but much stays the same.

Dr. Solomons began organizing gatherings of women with vulvodynia in cities around the country to learn more about their experiences with the disorder. At one such meeting, looking around the room he was struck by how many of the women were blond. He later found a relationship between pale skin tones and vulvodynia vulnerability, and developed an ointment that strengthened the resistance of pale-colored skin tissue to oxalate sensitivity.

A woman gynecologist in the office suite next to mine had an unusually positive response when she learned of Dr. Solomons' research. She told us that she was sure that many women who undergo hysterectomies in fact are suffering the same phenomenon that Sherry was experiencing, but in the uterus rather than the labia. Her hope was that Dr. Solomons' research findings could prevent these potentially needless uterus removals.

A urologist in my office building later told me that he has treated men who suffer the same disorder, generally in the urinary tract, though the numbers seem to be higher among women than among men.

Related Disorders That Could Benefit

One day I gave an in-service for a group of doctors in my building about dealing with difficult patients. I began by asking the participants each to close their eyes and visualize an interaction with their most difficult patient. Every one of them focused on a patient with fibromyalgia. Listening to their descriptions of the pain these women had described, I experienced a sudden sense of deja vu. The pain sounded just like Sherry's descriptions.

I contacted Dr. Solomons immediately with this odd discovery. Dr. Solomons laughed. Just the prior week he had contacted our local fibromyalgia association and had begun working with them. He now believed that oxalate build-up and the resulting pain can locate in any fragile body tissue.

Many vulvar pain sufferers also experience IBS (irritible bowel syndrome), IC (interstitial cystitis) which is a chronically painful bladder syndrome, and fibromyalgia. Are the underlying mechanisms of these illnesses similar to the underlying mechanism in vulvodynia? If so, the diet and calcium citrate treatments could be worth exploring.

A funny after-story

Years after working with Dr. Solomons on this case I myself began getting similar stabbing/burning pain in the soft tissue of my right outer-ear. I get the cigarette-on-my ear feeling when I have eaten excessive amounts of high oxalate foods. Beets and spinach, both of which I love, usually are the culprits. Small amounts are fine, but too much triggers the ear pain.

What of the association some researchers have found between vulvodynia and sexual molestation?

An interaction of vulvodynia with early sexual molestation may be because tissues damaged at that time become vulnerable eventually to the oxalate difficulty.

For more information

Tens of thousands of sufferers have been helped by Dr. Solomons research, including my client who has gone on to live a totally full and pain-free life. One of these women in the early 1990's launched a foundation to continue research and information dissemination on vulvodynia. That's the Vulvar Pain Foundation at www.thevpfoundation.org/. This foundation can be a great resource for those who suffer with the disorder. Request copies of their past newsletters to get full reports on their research findings on causes and cures.

The Vulvar Pain Foundation has sponsored research to clarify the oxalate content of various common foods. For lists of high, medium and low oxalate foods, google low oxalate diet, oxalate content of foods, etc. There now is lots of information on the web on the oxalate content of various foods.

The main point I want to make is that there IS a treatment for vulvodynia that is well worth exploring.

The underlying mechanism of the oxalate buildup has been controlled in many cases with eating a low oxalate diet plus taking calcium citrate pills. The downside of harmful side effects seem to be minimal, and for many sufferers the upside has been hugely helpful.

One word of warning however. After our initial article in J. Reproductive Medicine, Dr. Solomons did not publish most of his subsequent findings in standard medical journals. Ob/gyn's therefore are not necessarily familiar with his work, and some articles are overtly hostile to it. In this regard, not much has changed for many women with vulvar pain who consult their doctor for help.

The reality however is that many many women are now pain free from following the low oxalate diet, taking calcium citrate, and sometimes also utilizing other treatments that Dr. Solomons developed later in his career. The Vulvar Pain Foundation makes this information available on the web and in their newsletters.

Dr. Solomons is now elderly and ill.

Hats off to this brilliant researcher who devoted the last twenty years of his career to vulvodynia research, and eventually also to the study of fibromyalgia which seems to share some common underlying biological mechanisms.

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Susan Heitler, PhD, a Denver Clinical psychologist, is author of multiple publications including From Conflict to Resolution and The Power of Two. A graduate of Harvard and NYU, Dr. Heitler's most recent project is a marriage skills website, PowerOfTwoMarriage.com.