Vulvodynia is a general term which means, simply and literally, "pain in the vulva." It is not the name of a disease, but a symptom, just like "headache." Vulvar vestibulitis is a syndrome in which there is pain at specific points in the vulvar vestibule (the portion surrounding the entrance to the vagina).
Vulvodynia is a general term which means, simply and literally, "pain in the vulva." It is not the name of a disease, but a symptom, just like "headache." Vulvar vestibulitis is a syndrome in which there is pain at specific points in the vulvar vestibule (the portion surrounding the entrance to the vagina). Imagine a clock superimposed on the area, with noon pointing towards the clitoris. Women who experience vulvar vestibulitis tend to experience pain from the 3 o'clock position to the 9 o'clock position, as well as just inside the vaginal opening. This pain can be sharply focalized, and there may be small sores, bumps, or what feel like small grains of sand beneath the skin's surface in these areas.
The term vulvodynia is usually used to describe burning or stabbing pain that is felt more diffusely throughout the vulva. Many women have both vulvodynia and vulvar vestibulitis. In both cases, the skin usually feels extremely dry, and tears easily, leaving tiny and painful "fissures." Both cases may also involve "referred pain", in which the pain feels as though it travels from the vulva to the lower body.
Although it isn't mentioned in the literature, there seems to be another category of women who are somewhere in between having vulvar vestibulitis and vulvodynia -- they don't have generalized vulvar pain, but have pain (and bumps or sores) not only around the vestibule but also around the opening to the urethra, which causes burning after urination. Others may also experience rectal pain or itching. On this list, both vulvodynia and vulvar vestibulitis are frequently abbreviated "vv"; "vvs"; or "vvd."
There are many women who suffer from fibromyalgia ("FMS"), interstitial cystitis ("IC"), irritable bowel syndrome ("IBS"), or autoimmune disorders. However, many other women have no problems except for vulvar pain.
There is some research being conducted into a possible genetic component of vulvodynia (see "Dr. Bornstein", in "Resources"). However, many women do not have family members who suffer from vulvodynia or the other illnesses mentioned above.
Age of onset varies from late teens to post-menopause. Some women report difficulty with bladder irritations or vulvar pain from childhood; others have had no such history. Those who have had vestibular pain from the first time they tried to have intercourse or insert a tampon are said to have "primary vulvodynia." Those whose pain started only after initially pain-free penetration are said to have "secondary vulvodynia."
There are frequent attempts to use surveys to discover what else may correlate with vulvar pain. While such attempts are valuable, please note that many medical conditions have a high base rate of occurrence -- without comparing women with vulvodynia to women WITHOUT vulvodynia, knowing that a large percentage of us experience a particular symptom does not actually tell us that the symptom is more than coincidentally associated with the pain. Nonetheless, a few of the more striking correlations: many women with vulvar pain are light-skinned and of Northern or Eastern European descent; and many have previously injured their lower back. Many have had problems with recurrent yeast infections. A very large number have reported the pain has intensified when they were on birth control pills and also gets worse before or during their periods.
Some have other skin disorders, such as bumps or blisters on the hands and fingers, which might be warts, allergies, or fungal infections and may or may not be related to the bumps and sores in the vulvar area. Bumps may also appear on the upper or lower eyelid or close to the eye. Some have reported "geographic tongue", in which the tongue has a yellowish coating and red spots, but we aren't yet certain whether a connection to vulvar abnormalities exists.
Some women experience a constant and unchanging level of pain for years. Others describe their pain as occurring in cycles, with partial or complete remissions, followed by flare-ups. Many women with vulvodynia say that their pain began with vestibulitis and gradually spread in area; however, it is equally clear that not all vestibulitis will turn into vulvodynia. Then, too, there are women with vulvodynia who do NOT have vestibulitis.
Many women have reported worsening after being on birth control pills, using antifungal creams, or being on antibiotics. In most, but not all, cases, the additional pain seems to eventually recede when these things are discontinued.
Inexpertly performed laser surgery may be the biggest risk factor for long-term worsening of the pain!
YES. There are women whose symptoms have disappeared! Many women have been able to lessen their pain through following the suggestions others have provided. You are not doomed to spend the rest of your life at your current pain level; there ARE options you can try.
One suggestion is that you keep a pain diary, in which you keep a daily record of what treatment(s) you're trying, what the pain feels like (burning, itching?) and a note of your total pain level on a numeric scale (i.e., 1-10). It can also be useful to note where you are in your menstrual cycle. This information can be tremendously helpful to review -- or to graph -- and can give you some insights into what, for you, works and what doesn't.
We'd love to know this one! It's VERY important to remember that there are likely to be multiple causes of vulvar pain. After all, we don't expect that everyone gets headaches for exactly the same reasons! And, just as in headaches, your body may be able to tolerate ONE cause, but the pain results when you have a COMBINATION of causes acting all at once. Below are listed some of the possible causes we've discussed. Because some treatments may be appropriate for more than one suspected cause, they are listed separately (alphabetically) in section VI.
Unfortunately, allergies can also be to the building blocks of food (i.e., certain acids) which can make it difficult to figure out which foods might be causing the trouble. Rather than try to self-diagnose, you may want to try to talk to an allergist knowledgeable about vv -- or, if you can't find one, ask your gynecologist to consult with a specialist in allergic vaginitis. Most allergy tests are done by examining samples of your blood for the presence of specific antibodies, or by injecting small amounts of typical allergens and looking for skin reactions. While frustrations with the inability and apparent lack of interest of "Western medicine" to address our problems is perfectly understandable, please be especially careful about trusting "alternative" medicine in this arena: many, many ways are touted for determining allergies -- from noting reactions to spoken lists of foods, to impressive-looking but useless "computers", and most are expensive and scientifically worthless. Once your allergies are identified you can undergo a course of injections, or "Enzyme Potentiated Desensitization" (EPD), in order to curb the inflammatory response to the allergen.
Dermatological immune reactions can also occur from exposure to different kinds of chemicals. Many women find propylene glycol (an ingredient in many sexual lubricants!) to be an irritant. Frequently, cosmetics and "health and beauty" products, like many shampoos, contain chemicals that are absorbed through the skin and that can cause autoimmune or skin reactions in some people.
One theory -- closely associated with Clive Solomons -- is that some women have pain because they have sensitivity to plant oxalates, which form crystals and lodge in the vulvar tissue. This theory is somewhat controversial. Solomons is not a medical doctor, and his theory has not been scientifically validated. Many women with vulvar pain do test as having high levels of oxalate in their urine, but it is not clear if this is significantly different from the general population. Other critics of Solomons are concerned by his unorthodox practices (such as charging women to take part in his studies) and by the fact that he sells some of the nutritional supplements he recommends.
On the other hand, many women have talked to and worked with Dr. Solomons and are pleased with him, with his work, and with his commitment to helping women who have vulvodynia. Quite a number of women have achieved pain reduction or even pain elimination through following the low-oxalate diet along with calcium citrate supplementation. No matter which way you feel about him, you should be aware that the Vulvar Pain Foundation (listed in the "Resources" section) strongly supports Solomons work.
Why does the diet work?
One possibility is that oxalates do, in fact, form crystals that are painfully excreted. Another possibility is that oxalates in the blood irritate or ulcerate the skin. Yet another possibility is that some women are simply allergic to oxalates. Finally, the possibility cannot be overlooked that the oxalate diet works for so many simply because it is so restrictive that it is likely to remove from your diet any foods you ARE allergic to, and has nothing to do with oxalate sensitivity.
Your doctor can test your urine for oxalate levels. This is done either by testing urine collected at different times during the day, or by testing urine pooled together over the course of 24 hours. Many favor the first method, as oxalate levels rise and fall during the day, and treatment is supposedly easier when it can be timed to your individual oxalate peaks. Solomons also offers a urine-testing service. Contact information is in Resources.
The current treatment for oxalate sensitivity is to follow a low-oxalate diet (see Low-oxalate diet), usually with calcium citrate supplementation. If you have your urine tested by Dr. Solomons, he will let you know when you should take the calcium citrate so that it will optimally combat your peak oxalate times. Many women also use the nutritional supplements listed in Nutritional supplements.
Regardless of whether you culture positive for yeast (see Yeast), you may be sensitive to even small amounts of mold or yeast.
Autoimmune problems occur when the body fails to differentiate between its own tissue and the pathogens it needs to attack. Autoimmune disorders tend to run in families, and often there will be more than one site the body is attacking. Two autoimmune disorders that are known to be associated with vulvar pain are Sjogren's syndrome (a general drying of the mucous membranes) and Lupus erythematosis, a systemic debilitating disease. If you suspect you have autoimmune problems, ask your doctor to perform an Anti-Nuclear Antibody (ANA) test. Elevated levels of ANAs can indicate that your antibodies are attacking healthy tissue.
Please note that attempts to strengthen your immune system may only strengthen the attack against healthy tissue. Ask your doctor about the use of immunosuppressants. This is, of course, a dangerous course of treatment -- make sure your physician is knowledgeable in this area.
High white-blood-cell count (WBC) signals some sort of infection in your body. The infection may be either bacterial or viral (herpes, HPV). For treatment for both bacterial infections listed below (see Bacterial infection treatments).
Yes, you can get strep in the vagina, just as you can get strep in the throat. You can be diagnosed with a culture. Some women with B-strep report that symptoms are worse after sex and improve by drinking lots of water.
Also called "lactobacillosis" or "Doederlein cytolysis." This results from an overgrowth of the "good" bacteria normally present in the vagina. Symptoms can feel much like yeast. If you repeatedly feel you have yeast infections and no yeast is ever found in your cultures, this may be your problem. Your doctor can also culture for this. If there is bacterial overgrowth, your vaginal pH will be too alkaline. Treatment is with antibiotics; usually Augmentin. (But, see also Antibiotics.)
This is normally a condition in which large, painful red nodules appear on the legs (or sometimes other areas). The condition is thought to result from an abnormally activated immune system. Inflammation occurs in the fatty layer of the deeper layers of skin.
It is possible that the sore raised red areas in our vulvas may be either a form of (or related to) erythema nodusum. Consider that factors predisposing one to erythema nodusum include:
...which sounds like a collection of things frequently noted as problematic by many women.
Chronic activation of your body's "fight or flight" system may result in tense or unstable pelvic muscles, reduce the volume of blood flowing to the genitals, and over stimulate the nerve pathways, leading to pain. People with excessive sympathetic arousal tend to experience generalized anxiety or panic attacks (flushing, racing heart, feeling of loss of control, feeling of unreality). For treatment, see Antidepressants & anxiolytics and Biofeedback.
Fibromyalgia is a systemic but non-inflammatory and non-degenerative disease of unknown etiology. Fibromyalgia sufferers generally have muscle and joint pain all over the body as well as high levels of fatigue. Clive Solomons believes fibromyalgia may result when the same type of oxalate crystals he hypothesizes cause vulvar pain lodge in muscle tissue. Some doctors, like Dr. St. Amand believe that all vulvar pain is a manifestation of fibromyalgia, and he recommends treatment with guaifenesin (see Nutritional supplements). There are many women on this list, however, who do not fit the fibromyalgia profile. Some of the more successful ways to relieve the pain of fibromyalgia seem to be antidepressants, exercise, and nutritional supplements.
A number of women suffer from some hormone disruption -- either irregular periods, endometriosis, ovarian problems, or the mis-named polycystic ovarian syndrome, which is actually related to insulin resistance. Hormones clearly appear to play a role in vulvar pain, although the extent of the role isn't known. A majority of women worsen while on birth control. A number of women have reported an improvement of symptoms during pregnancy. And a very large number report fluctuations in pain dependent on where they are in their menstrual cycle. Systemically low levels of estrogen, or low levels of estrogen reaching the vulva, may be especially predictive of vulvar pain.
Ask your gynecologist to consult with a reproductive endocrinologist on this one. If blood work is done (especially by a non-specialist), be aware that hormone levels fluctuate throughout the day, and, of course, across your cycle. Many hormone tests unfortunately report the results as "normal" if your hormone levels are within the extremes that would be expected from the lowest normal point to the highest normal point in the cycle. As a result, only women with very severe hormone problems are told they have abnormal results. It's important for you and your doctor to establish whether your results are normal for WHERE YOU ARE in your cycle.
Irregular hormonal changes can also play into chronic infections. The healthy vagina contains a balance of different types of bacteria, and different hormonal environments can allow the overgrowths of some types. Vaginal discharge becomes alkaline at ovulation, which can result in burning -- and the presence of semen may cause the same effect. Progesterone increases prior to menstruation can allow an overgrowth of lactobacilli, which can result in a painfully acidic feeling; yeast may flourish during menstruation; and low estrogen after menstruation may cause drying and cracking. The key to symptom treatment in this case is awareness of which of these components is active at any time, given where you are in your cycle. For instance, baking soda and water douches may help with lactobacillus overgrowth; boric acid may help during menstruation; lubricating ointments may help post-period.
Addressing the underlying hormonal imbalance is discussed in Hormonal treatments.
This is also a controversial one. The papilloma virus is actually a family of viruses, thought to be spread through sexual contact, but probably also spread through other forms of close contact. It can also be transmitted congenitally. The viral incubation period can last for years. A large number of people have the virus, and the majority of them will experience no pain and may not know they are infected. Some studies have shown that the rate of HPV occurrence is no higher among vulvar pain sufferers than it is among the general population. However, it is possible that specific immunodeficiencies, or specific strains of the virus -- or both -- may make a pain response more likely. The virus cannot currently be cured, although therapeutic vaccines are being researched. Though there are exceptions, women with HPV and vulvar pain tend to have vestibulitis (with or without pain around the urethra), "clock points" of pain, and identifiable sores, raised areas, or tiny bumps below the skin. Please note that if you have HPV, you are more likely to develop cervical cancer. Yearly pap smears and quitting smoking can reduce your risk. See Antivirals for treatment information.
Soaps, pantiliners, pads, detergents, and toilet paper with dyes or fragrance can all theoretically cause contact dermatitis and irritate the vulva. See Surface irritants.
This is a skin disorder of unknown etiology that can occur on any part of the body. Typically, the affected skin turns white, shiny, and thin, although the disorder is also less commonly manifested by thick white patches or simply by reddened and irritated skin. The primary symptom of lichen sclerosis is itching of the affected area, though it may also cause painful fissures. The skin can be biopsied to look for changes characteristic of the disease. Treatments usually involve use of topical steroids (but, see warning in Is There Anything I Shouldn't Try?), although some women with this condition have also responded well to the low-oxalate diet or the use of topical testosterone or progesterone creams. Be aware that lichen sclerosis may increase a woman's predisposition to malignant changes in the afflicted area.
This is a contagious and common viral infection (DNA-pox virus group) of the skin, generally described as "benign." Molluscum contagiosum can occur both in children and adults. The lesions are usually small (1-2 millimeters), smooth, domed bumps with a central dimple covered by transparent skin. Generally, there are multiple bumps, although there may be a single lesion. When opened or squeezed, the lesions contain a white core of curd-like material. Lesions may also be found on the lower abdominal wall, pubic area, inner thighs, as well as on the vulva. The incubation period for the virus may extend for months, making it difficult to identify the source of the exposure.
The lesions produced by molluscum contagiosum are usually described as painless. However, at least one sources notes that lesions can become red and sore when the virus triggers an immune response.
While many women who have been told they have HPV do NOT have genital warts characteristic of that disease, the description of molluscum contagiosum sounds more like the vestibular bumps that some women report. When molluscum contagiosum occurs elsewhere on the body, treatment involves opening the lesion with a small blade or needle and removing the core by scraping (local anesthetic is used). This may obviously not be practical for widespread vulvar lesions, but it IS still worth asking your doctor whether you appear to have this virus. You may want to try antivirals like those noted in Antivirals, but be aware that some treatments that you may be prescribed for HPV may not work as well for molluscum contagiosum. Then too, different viruses have different levels of fragility. For example, repeated applications of heat may affect one virus and not another. A dermatologist may be able to answer these questions (and come up with creative antiviral suggestions) better than can a gynecologist.
Particularly for women who experience generalized vulvodynia, "stabbing" pain, "shooting" pain, or "referred" pain (pain that seems to travel from the vulva to the legs, feet, or buttocks), the problem may be damage to the nerves. Many of the women reporting this kind of pain have been in some kind of accident or have otherwise injured the base of the spine. Doctors can use temporary nerve blocks to try to isolate the nerve pathways that are causing you trouble. The best doctor to consult for this type of pain may be one affiliated with a general chronic pain clinic -- NOT a gynecologist. Knowledgeable chiropractors or physical therapists may also be able to help you identify nerve problems, especially if they stem from a misalignment of the spine or from a tilted pelvis. At this time, painkillers and antidepressants may be the best option. For extreme pain, nerves can be removed, but this will result in permanent numbness.
Glazer's paper, which you no doubt saw on the website that guided you here, posits that the pain may result from chronically high levels of tension in the pelvic muscles. This may occur with or without the kind of excessive sympathetic arousal mentioned in Anti-convulsants (anti-epileptics) -- some women may have simply gotten into the "habit" of tensing their pelvic muscles. Treatment involves the use of biofeedback-guided contractions to exert the muscles to the fatigue point so that relaxation follows. Consciously breathing from the abdomen, as well as engaging in hatha yoga and other exercises, can help.
Experts used to believe that childhood sexual abuse was the primary cause of vulvodynia/vulvar vestibulitis. Unfortunately, there are still practitioners out there who believe this and hence regard vulvar pain as a psychological and not physical problem. A past history of sex abuse certainly could result in vulvar pain, but studies have shown that women who have vulvodynia are no more likely to have been abused than women who don't have vulvodynia.
Many women with vulvar pain also have some degree of vaginismus, which is the term given to involuntary painful vaginal muscle spasms. Because vaginismus is commonly found in sex-abuse survivors, this has helped establish the abuse/vulvodynia link in the minds of some doctors. However, a history of any sort of vulvar pain can also lead to secondary vaginismus -- if you expect pain, your muscles will often involuntarily tense up. This is called "guarding", and it's an adaptive response to the situation. Chronically tense pelvic muscles might also result in painful spasms. Vaginismus can be treated with dilators and progressive relaxation, but unless the underlying causes of the pain that caused the vaginismus in the first place are treated, this is unlikely to have a great effect on vulvodynia sufferers.
Ask your doctor to extend the incubation of the yeast culture. Many women with yeast problems who are repeatedly told that they don't culture positive for yeast find that if the culture is allowed to grow for longer periods of time, yeast will be apparent. If you have chronic yeast infections, you may need to address intestinal yeast overgrowth, check that your hormone levels are normal, that your blood sugar is normal, and that you are not insulin resistant. If you have constant symptoms but don't test for yeast, you may have "atrophic erythematous candidiasis" -- which is when the candida cells grow beneath the surface of the skin and are thus not captured by an external swab (or affected by topical antifungals!). Be aware that frequent use of antifungals (especially the topical "-azole" creams) may increase your pain. Yeast treatments are addressed in Yeast.
This will depend on what you (and an informed doctor, if you can find one) feel are the main causes of your pain.
If your doctor tells you your ONLY options are surgery or interferon shots, find another doctor! (This is sort of like going to a doctor when you have a bad headache and being told, "Ok, let's open your skull and ablate some areas. If that doesn't work, we'll try aspirin.") Your doctor probably will NOT know a lot about this condition. What is critical is whether they are willing to research it and consult with doctors who ARE more knowledgeable.
Your doctor will probably start out with a "Q-tip test." This over glorified term means that your doctor will poke the vestibular area or other regions with a swab and ask you what hurts. The only reason for your doctor to do this is if he or she doesn't believe you've correctly named the parts that hurt; however, this seems to be a standard way to begin an exam.
Next, your doctor may want to do a colposcopy. In this procedure, the skin is examined under magnification, through a colposcope. Your doctor will probably want to wash the skin with acetic acid (vinegar) first; areas that turn white indicate skin abnormalities.
Colposcopy pros: it will tell your doctor whether a biopsy is warranted and whether your skin is damaged.
Colposcopy cons: the vinegar wash can sting; the procedure can be very expensive.
If the colposcopy shows damaged areas, your doctor may want to do a biopsy. Request that the biopsy be examined for both lichen sclerosis and HPV. IF YOU DO A BIOPSY FOR HPV, make sure you ask that IF HPV IS FOUND, THE HPV "TYPE" IS DETERMINED.
A biopsy that finds evidence of HPV only through looking at skin inflammation and not DNA-typing may in reality simply tell you that you have skin inflammation -- which you already knew, of course! Plus, some subtypes of HPV are linked to higher rates of cervical cancer, especially in the presence of estrogen (at least in rats...). Most types of HPV are harmless, affecting the external genitalia as well as other places on the body. Some, however, do target the cervix, and if you're undergoing the pain of a biopsy, you might as well find out how much you need to be concerned with cervical problems at the same time.
Biopsy pros: you can rule out vaginal cancer (a rare, but not unheard-of cause of pain); you can find out whether you have lichen sclerosis, or a form of HPV that might put you at risk for cervical cancer
Biopsy cons: can REALLY hurt; take a long time to heal, or create a cyst; and may not tell you how to proceed with your treatment.
A good doctor will also test your vaginal pH (which will tell you whether your bacterial levels are normal), culture for yeast and for as many sexually-transmitted diseases as possible, do a thorough visual inspection for molluscum contagiosum (be sure to point out to them the areas in which you feel bumps), and do a hormone panel. He or she may also want to see whether your white blood cell count is elevated (indicating infection) and take steps to rule out autoimmune problems, such as by performing an ANA blood test (see Autoimmune disorders). He or she may also numb the surface of your skin with lidocaine and perform a Q-tip test. In this case, it IS helpful and can tell you whether your problems are superficial skin irritation or represent deeper neuromuscular damage.
Where you go from there depends on what you feel the primary cause(s) of your pain are. Some treatments we've tried are listed below, in alphabetical order.
Check out your practitioner carefully -- talk to his or her previous or current clients if you can. It doesn't seem to be necessary for the acupuncturist to know exactly where your pain is for you to experience benefit from this technique. Many women report deep relaxation or temporary pain relief from acupuncture, but it doesn't seem to be a cure. Vulvar pain can lead to a "pain cycle" in which tissue irritation leads to tensed muscles and emotional and physical stress, which furthers the skin irritation. Acupuncture almost certainly releases endogenous opiates -- our natural painkillers -- and interrupts this vicious cycle.
The use of antibiotics is highly controversial. Your doctor may want to put you on some, especially if your white blood cell count is high. Many women have reported that antibiotics seem to help at first but then cause a "rebound" effect in which the pain returns worse than it was before. Others believe that their vulvar pain STARTED with antibiotic use. Whether or not there is a link, antibiotic use CAN lead to yeast infections, and repeated use can lead to resistant bacteria, or outbreaks of erethyma nodusum, which are reasons enough to question your doctor carefully about the need for them. One exception: if your doctor has diagnosed you with vaginal B-strep, Augmentin may be the best treatment for you to try. As Augmentin is a form of penicillin, be careful to watch for allergic reactions.
Generally, these drugs are prescribed when it is believed that nerve damage is the underlying cause of the pain. The idea behind the use of these drugs is that they raise the threshold for the amount of stimuli needed for nerves to fire -- thus raising your pain threshold. Women with vulvodynia (as opposed to vestibulitis) or who report "stabbing" pain may have more success with these. These drugs are typically taken at higher doses than are the antidepressants and have a more substantial effect on the central nervous system. Of course, they have their own set of side effects: dizziness, mental fog, fatigue. It may be best to try them only after trying antidepressants first. Some anticonvulsants used by list members: Neurontin (gabapentine), and Tegretol (carbamazepine). Tegretol is also called Atretol, Depitol, or Epitol. It is chemically related to the tri-cyclic antidepressants and may cause liver damage -- be sure to get your liver enzymes periodically checked if you're taking it.
Just because these drugs are used primarily to lower anxiety and decrease depression does NOT mean that vulvodynia is "in your head." The amount of the neurotransmitter dopamine in your central nervous system affects your perception of pain. These drugs alter that perception by raising your dopamine levels.
Most of the antidepressants available today are SSRIs (selective serotonin reuptake inhibitors), like Prozac, Paxil, and Zoloft. While these drugs act primarily on the serontonergic system, they also have some secondary effect on the dopaminergic system. Because the dopamine action is not direct, many find that these drugs are not especially effective at reducing pain, though some women on the list have reported good results.
An older class of drugs, tricyclic antidepressants, work directly on the brain's dopamine pathways and can offer relief, even at low doses. Some people think that tricyclics simply "mask" the pain. Others, who believe that the pain is due to neurotransmitter imbalances or nerve damage, feel that this is more than psychoactive aspirin -- it IS addressing the underlying problem.
A few notes on all tricyclics: many have side effects that range from annoying to incapacitating. Start with a low dose -- as little as 10 mg/day -- and increase by 10 mg each week or every two weeks until you notice a difference in the pain, in order to minimize side effects. The time of day you take the medication may affect your experiences: Some women have reported that taking their pills a few hours before they go to sleep minimizes the feeling of grogginess the next morning. It is important not to combine tricyclics, or tricyclics and SSRIs or natural antidepressants like St. John's Wort. Equally important is that you slowly taper off your use when you want to discontinue the medication. Stopping the medication abruptly may or may not worsen your pain, but it CAN lead to severe "rebound depression" if your dose was high enough.
Pamelor (nortriptyline hydrochloride), Triavil (a combination of perphenazine and amitriptyline), Doxepin (doxepine hydrochloride), Desipramine (desipramine hydrochloride), Elavil (amitriptyline).
Which one works best for you seems to be a matter of trial and error.
Side effects (and remedies)
One of the most commonly reported side effects is weight gain. Other problems can involve constipation, dry mouth, mental fuzziness, and, less frequently, difficulty reaching orgasm. Constipation can be avoided by increasing fiber intake or with the use of magnesium supplements -- take three 500 mg pills/day; increase slowly to avoid diarrhea. Magnesium oxide may be the most easily-absorbed form of the mineral. For many, the side effects will diminish after a month or two at the maximum dose you decide on, as your body adjusts.
Anxiolytics are anxiety-reducing or sedative drugs. An older class, the benzodiazepines (usually drugs ending with "-epam"), work by increasing the amount of the neurotransmitter GABA available in your brain. These drugs are, unfortunately, addictive. Newer anxiolytics have been developed that target different neurotransmitters and that have less addictive potential.
The theory behind the use of these drugs in treating vulvar pain is that they may help with excessive sympathetic arousal. Unfortunately, they may be "too little, too late" for people who have already learned physically detrimental ways of expressing their stress and anxiety. Still, this might be a useful measure in conjunction with another treatment. Talk to a psychiatrist about your options, and check out your pills carefully: Some can make you mentally sluggish, and some will cause an initial "paradoxical effect" -- make you MORE anxious -- before they finally start giving you relief.
This is one of the least invasive, least expensive (sometimes) and most logical places to start. Regardless of the deeper underlying reason WHY your vulva is inflamed, the fact is that it IS, and anything that can reduce the inflammatory reaction is going to give you relief and may even help break the pain cycle. There are some over-the-counter anti-inflammatories that can help:
Note: not all the different types of vitamin E oil being marketed seem to work equally effectively, and some women may be sensitive to the oil -- do a patch test before applying it to a wide area. The two sources mentioned above are ones that have been used to good effect.
Two prescription anti-inflammatories that may help:
A note on isoprenosine: this is a drug mentioned in an bibliography on Howard Glazer's website as something that can be used to treat vulvar pain symptoms. None of us have been able to find a doctor knowledgeable about it, and it is unlikely that the drug has FDA approval in the United States. The reference in which the drug is mentioned is: Sand Petersen C., & Weismann K. Isoprenosine improves symptoms in young females with chronic vulvodynia. Acta Dermato-Venereologica. 76(5):404, 1996 Sep.
Also keep your eye on:
These are both drugs that are in advanced clinical trials and do not yet have FDA approval. They selectively target and inhibit prostaglandins (COX-2) that are implicated in the inflammatory response. Initial tests have shown them to be powerful and without serious side effects. They will initially be approved only for arthritis, so your doctor probably will not have heard about them. You can monitor their FDA journey on the internet by periodically reading the pharmaceutical company press releases (in this case, the manufacturers are Montesano and Merck).
If your pain is due to herpes, acycolvir may help. It is not clear whether this drug is otherwise beneficial to vulvar pain sufferers.
Interferon is an injectable anti-viral drug that is sometimes given to women who appear to have HPV. Typically, the drug is injected around the vestibule -- into the wart or sore, if any are present -- three times a week for three or four weeks. Interferon is extremely expensive, and the frequent office visits required for its use make it even more so. Ask your doctor about the possibility of self-injecting the drug in your upper thigh -- it is not clear whether vaginal or intramuscular injection is superior, although larger doses may be required for the latter. If done by your doctor, lidocaine can be mixed into the preparation to ease the pain of the shot. Many women report flu-like symptoms with the use of interferon, but these can range from very mild and only shortly after the shot to chronic. Some women have gotten either temporary or permanent relief from interferon -- about a 50% success rate is reported in most studies. Many journal articles report that when interferon is used at the same time as other techniques, such as surgery, the recurrence rate of pain is lower than with the use of either technique alone. Benefits from interferon may not be apparent until some time after the treatment is completed.
One of the new antiviral medications being used for HPV is Aldara cream. Aldara's active ingredient, imiquimod, is a substance that is believed to stimulate the body's own interferon response. The cream is expensive (around $120/month) and may cause mild-to-severe initial skin reactions that diminish after the first month (however, it is MUCH less traumatic for most than interferon shots). It is used for up to 16 weeks, and it may take longer than that for results to be seen.
Some doctors -- dermatologists, in particular -- may be interested in killing off wart viruses through less conventional means. Surface viral material may be destroyed by repeated applications of heat (which may, however, cause other problems -- see section 6.19). Others may recommend the use of a high-dose antihistamine like cimetidine for several months. You may find that this slows your metabolism or disturbs your sleep, and it may not be especially effective for your pain.
For strep or for bacterial overgrowth, the antibiotic Augmentin may be effective. For those wishing to avoid antibiotics, a douche consisting of 1 part water to 1 part hydrogen peroxide might be effective. Use every other day for five days.
For cytolic vaginosis, or other bacterial overgrowth, betadine douches may help. You can purchase one at the drugstore -- it'll probably be labeled "medicated douche"; just check the ingredients. Or, more cheaply, you can buy a bottle of betadine and add it to an ordinary (and re-usable) douche.
Baking soda douches can also be used: to make these, mix 2 to 3 tablespoons of baking soda per 1/2 gallon water, and use three times a week.
Note that if you have a yeast infection rather than a bacterial one, these treatments can make you worse by making the vagina less acidic and hence more hospitable to yeast.
If you do not currently have a bacterial or viral infection, it is possible that the Bartholin glands located in the vulvar vestibule, as well as other vulvar glands, may have been blocked or otherwise damaged from past infection. Treatment would involve draining the glands (lancing or aspirating them). Anti-inflammatories may also help for milder forms of irritation.
Removal of the Bartholin's glands is sometimes discussed for vulvodynia that doesn't respond to anything else (see "surgery"). Before going that far, it may be useful to have the doctor merely open and drain the glands. This can be done at the doctor's office and without the use of general anesthesia.
Treatment of chronic irritation of Skene's glands is more controversial. Skene's glands surround the urethra, near the bladder, and are the homologue of the male prostate gland. Removal of these glands may lead to incontinence, as well as making vaginal orgasm impossible. If the glands seem to be inflamed, lancing, rather than removal, is strongly recommended.
The rationale for biofeedback can be found in Glazer's paper on the vulvodynia.com website. The goal is not to strengthen the pelvic muscles (which can be quite strong in vulvodynia sufferers), but to RELAX them by learning to work them to the fatigue point. One of the biggest problems in pursuing this treatment is locating a physical therapist or other practitioner who can help you assess what the current resting levels of your pelvic muscles are, and thus whether biofeedback would be appropriate for you. Check the professional registry on the vulvodynia.com website.
Successful biofeedback requires access to (purchase or rental of) a home trainer, which is expensive, and many insurance companies simply won't pay for "biofeedback." You'll need your practitioner's help to pitch this as something more along the lines of "pelvic floor dysfunction." (If they don't go for that, try "neuromuscular rehabilitation.") When your physical therapist's report comes back with the measurements showing you have weak and spasming pelvic muscles, send it to your insurance company, along with Dr. Glazer's published study results, and copies of articles from both the national vulvodynia organizations, which supply additional data from other sources. A letter from a sympathetic doctor stating your muscular problems have led to "loss of functioning" may be helpful. Identify the home trainer you wish to buy or rent, and which features it has that will enhance your recovery. THEN, present your plan's definition of durable medical equipment and how the home trainer meets that definition. Also investigate whether your insurance covers biofeedback for migraines -- many do -- and you might be able to build a case on the similarity of the need for tension reduction. If your insurance comes back with a denial, don't fade away. In writing, ask the company to inform you of which medical sources they used in determining lack of medical necessity, and ask for a copy of their written policy and criteria for the use of biofeedback, as well as the company's policy/criteria/treatment protocol for vulvodynia. The golden rule, for dealing with both insurance companies and doctors: Don't be afraid to be a bitch!
Features to look for are portability, programmability, memory, ability to hook up to PC for printing out hard copy reports, type of sensor used, light bar and audio feedback, and cost.
One list member has favorably mentioned the "Regain" machine. Howard Glazer recommends the U-Control machine, citing that it's compact, easy to use, reliable, and possibly the least expensive on the market. John Perry, however, feels this to be a false economy. (See http://www.vulvodynia.com)
The idea behind biofeedback is not to strengthen the pelvic muscles, but to get them to relax. If your physical therapist uses biofeedback primarily to treat incontinence or interstitial cystitis, he or she might recommend that your resting levels of pelvic tension be below 1 microvolt. Glazer and Perry recommend that, for the treatment of vulvar pain, you learn to bring -- and keep -- muscular tension below 0.5 microvolts.
The idea behind Kegel exercises is to strengthen the muscles of the pelvic floor. This is often recommended for older women or for women after childbirth to reduce the occurrence of incontinence and restore the tone of the vaginal muscles, and is sometimes recommended for all women, to improve the strength of contractions felt during orgasm. You can practice contracting the muscles on your own, or you can buy (often very expensive) "Kegel weights" to assist you. If you practice on your own, you might want to meet at least once with a physical therapist first so that you can ensure that you're doing the exercises correctly -- done incorrectly, they can be harmful.
Since the goal of biofeedback isn't strengthening but relaxation, it is a very different process than Kegel exercises. Theoretically, if one were to use Kegels to exercise the muscles to fatigue, relaxation would result. It is difficult, however, without the feedback the machine provides, to isolate the correct muscles and have an accurate sense of the level of work the muscle is experiencing. If you simply strengthen the muscles without learning how to relax them, you may make your vulvodynia worse by making the chronic pelvic tension BETTER at cutting off blood flow to the vulvar tissue.
TENS machines are sometimes recommended for nerve or muscular pain of all types. These machines work by electrically stimulating the muscles. There are no published reports of success at using TENS units to reduce vulvar pain, and we are not aware of anecdotal reports. This does not mean they aren't potentially useful, however.
EMPI markets an "Innosense" machine which is a combination stimulator (like the TENS machines) and EMG biofeedback device. This product has not been available very long, and we do not have information about its effectiveness.
If your skin irritation allows it, it might not be a bad idea to acquaint yourself with your pelvic muscles. A URL to help you learn can be found in the Resources section. If nothing else, you can get a better understanding of where your pain seems to be coming from, and you can try to practice isolating particular muscles and contracting and relaxing them. This can help make you aware of the times during the day in which you unthinkingly tense up. You may find it helpful to try pushing the muscles out (as if you were going to the bathroom); to try pushing against (NOT clamping down on) an inserted finger; or to imagine that your vagina is sucking on a straw. Remember to breathe deeply while doing this.
Vigorous exercise releases endorphins and can thus break the pain cycle in a way similar to acupuncture. For women with hormone problems, especially those related to insulin resistance, exercise can help by increasing insulin uptake in the muscles. Gentle exercise is particularly recommended for women with fibromyalgia. A consistent program of exercise also boosts mood, helps the immune system, and improves sleep.
Some women find that sweat is too irritating to the vulva to pursue strenuous exercise. Try doing an aerobics video at home naked from the waist down. (Your partner may be especially encouraging on this one!) Even if this still generates too much sweat, there are other forms of exercise available, like T'ai Chi or yoga, or -- if the chlorine isn't irritating -- swimming.
There are several possible ways hormone problems might cause vulvar pain, so there are several possible hormonal treatments.
Dr. Willems, at the Scripps Clinic in San Diego, advocates the use of Estrace (estrogen cream). This is NOT used to increase systemic estrogen levels, but is used to vascularize (increase blood flow) to the vulva, as well as to thicken it. You will almost certainly have to educate your doctor about this. Estrace is normally used by postmenopausal women, who insert an applicatorful, and doctors are reluctant to prescribe it for premenopausal women. Instead, you will be using an amount about the size of a jellybean and will be applying it only to the external vulva. Dr. Willems claims that, used in this way, Estrace is only minimally absorbed. Blood levels of estrogen do not change, and patients do not exhibit symptoms of hyperestrogenism, such as increase in breast size. However, be aware that long-term studies on the use of low-level estrogen creams do not exist, and the effects on the risks of breast- or endometrial cancer are unknown. Furthermore, it is not clear whether discontinuing Estrace causes a rebound effect: increasing the amount of hormone in the vulva causes the estrogen receptors there to "down-regulate" -- become less sensitive to -- the hormone. Thus, ceasing the cream can cause what little estrogen is naturally there to be even less effective. Many women experience initial irritation with Estrace, and some report itching that feels like a mild yeast infection (this may actually be indicative of your skin *healing* -- much in the same way that a healing scar itches). It will probably take about six weeks to notice any benefits. Your doctor can call in a prescription for Estrace to the Women's International Pharmacy, which offers estrogen preparations in more soothing bases than are normally used, and which may be considerably cheaper than your local pharmacy. If you have a local compounding pharmacy, they may be able to make an estrogen cream in a vitamin E base, which gives you the benefit of an agent many have found helpful.
What about other estrogen-delivery products?
There is an insertable device, called Estring, which is left in the vagina and which time-releases estrogen. The benefits of Estring are that it has very little systemic absorption, doctors may more readily prescribe it, and it is relatively inexpensive. Unfortunately, the device itself is rather large and may cause discomfort for smaller women or women prone to pelvic muscle spasms; the material the device is made of can itself be irritating to the walls of the vagina; it also can uncomfortably block menstrual blood flow.
Premarin cream has been anecdotally suggested by women on the list to not be as effective as Estrace, although no research has been conducted on this question.
Do I need to take progesterone?
Dr. Willems suggests that the amount of estrogen you will be absorbing should be too small to require additional progesterone, as long as you cycle regularly. You may want to request that your doctor take a baseline estrogen reading before you begin the treatment and then take a reading a few months later (*when you're in the same place in your cycle*) to make sure your blood hormone levels are not elevated. If you or your doctor feel you should be taking progesterone -- or if you don't cycle regularly -- be aware that "natural" progesterone can have far fewer side effects than the synthetics usually prescribed. In Canada, an oral natural progesterone called Prometrium is available. In the US, you can either get your doctor to prescribe Prometrium and contact a foreign pharmacy to fill it, or a compounding pharmacy can make an oral natural progesterone for you that's similar to Prometrium.
Testosterone cream has been useful for some women with lichen sclerosis and also for others with unspecified vulvar pain. Again, this can be provided by a compounding pharmacist as a gel of 2% testosterone in a 60 gm base of petroleum jelly (or other proportions your doctor recommends). Some women using testosterone cream at higher doses or for long periods of time have complained about permanent virilizing side effects. This is also probably not a good option for women with irregular periods or "polycystic ovarian syndrome", as androgen levels are already high.
Some doctors have suggested that it is not the hormone content of the cream that matters; what really provides relief is the physical barrier between your vulva and urine and outside irritants. This does not seem to be wholly the case for most women. While physical barriers DO offer some degree of relief, the same woman will generally find that some creams are helpful and others do nothing. Many who use Estrace can see the difference in visible irritation and thickening of the skin. The content of the cream does seem to matter.
There are some clinical studies suggesting that a variety of herbs may be useful in regulating hormone cycles. These include licorice root, black cohosh, and dong quai. (CAUTION: there is some evidence that licorice root and St. John's Wort interact in a way that may be dangerous.) Remember that none of these treatments are regulated, and that finding a product that is as pure and potent as its labeling suggests may be difficult. It is probably best not to try these treatments at the same time, both so that you know what's working for you if you experience improvement, and also to avoid unknown effects of interactions.
If you have irregular periods along with hypo- or hyperglycemic symptoms, a family history of diabetes, and some signs of too-high androgen levels (facial hair, adult acne), you may have the so-called polycystic ovarian syndrome, which is actually a form of insulin resistance. A low-carbohydrate and low-sugar diet may help you cycle, and the resulting rise in estrogen levels may help the vulvar skin. Two drugs are currently on the market which re-sensitize insulin receptors: troglitazone (Rezulin) and glucophage (Metformin). Like the diet, these drugs may make you resume having ovulatory cycles, which can help normalize your hormones (as well as relieve your hypoglycemic symptoms).
Some women use calcium citrate -- 500 mg, three times a day -- to help bind the oxalates and prevent crystal formation. This doesn't necessarily LOWER oxalate levels, but it may reduce the pain. If you can't tolerate (or can't find) calcium citrate, calcium carbonate (such as is found in TUMS) seems to also work, albeit for fewer people. Usually, magnesium is taken as well (up to 1500 mg/day), to avoid constipation and to help with calcium absorption. Some controversy exists as to when the calcium should be taken. Clive Solomons argues that the calcium should be timed to one's oxalate peaks; others argue it should be taken 20 minutes before eating (for maximum absorption); still others feel it makes no difference. Please note that many women have achieved success with the diet regardless of whether they have had urinary oxalate levels tested and without taking the citrate at specific times. The importance of *some kind* of citrate supplementation to the low-oxalate diet is not disputed by any of the different groups supporting the oxalate theory. Length of time until pain reduction on the diet varies greatly, with some women reporting improvement after a week or two, and others requiring six months or more to see progress.
Reducing your oxalate intake may not curb your pain, even if your problem is oxalate sensitivity. The amount of uric oxalate is determined not only by dietary intake of oxalate but also by the ability of your intestines to break down the oxalate.
There's been some discussion of a "good" bacterium, "oxalobacter formagenis", which is being studied at the University of Iowa as something that helps break down oxalates. As many women report that their pain was triggered by antibiotic use, some have wondered whether the destruction of oxalobacter formagenis through this kind of treatment is the source of their problems.
Some women following the low-oxalate diet also make use of some of the nutritional supplements listed in the next section.
For all of the following, please bear in mind the usual warnings that the FDA does NOT regulate the "nutrition supplement" industry, except in ensuring that they can't make specific claims of beneficial results. Independent consumer rights groups who have tested these products frequently find that the potency and purity is NOT as high as what's claimed on the label. If you find a specific brand that seems to work well, please share that information with the list.
Also, taking a vitamin (or, for that matter, an antidepressant) is not like popping an aspirin. It will take time (on the order of weeks) for the substance to build up before you notice an effect.
These are generally used for vulvodynia and constant pain rather than for pain with penetration. Research has shown that those who use narcotic pain relievers out of necessity (as opposed to for recreation) do not seem to develop addiction. You will have more success obtaining these drugs if you go to a pain clinic, rather than going through a GYN or your GP. Be aware that you can develop tolerance to any pain medication. Do not increase your dosage without your doctor's approval. You may also want to switch medications rather than increase your dosage.
Whether your problem is CAUSED by contact dermatitis, or your skin has become easily irritated due to other causes, the following may help:
It is a myth that the vulva needs anything more than water to keep clean. Soap can wreak havoc on the balance of vaginal flora and exacerbate pain. If you feel you must use soap, oatmeal soap (or a bath with Aveeno Oatmeal Powder) seems to clean without causing irritation.
This is probably the single most controversial issue on the list. The facts we all agree on: surgery should be a last resort, not a first resort. Surgery can make you worse.
There are two types of surgery available: scalpel and laser. With scalpel surgery, the "Woodruff procedure" is used; the sensitive areas around the vestibule are excised, and the healthy skin is pulled over them. Recovery can take weeks.
Many different types of lasers are used for laser surgery. The worst results seem to be from doctors who laser too aggressively, damaging healthy tissue. The skin CAN be pulled over the lasered area, but generally is not. Recovery time can take longer and be more painful than with scalpel surgery.
It seems that most of the cases of worsening after surgery come from the use of laser surgery, but it's not clear whether that's because more laser than scalpel surgeries are performed.
If you are considering surgery, it is absolutely imperative that your doctor be able to provide you with the phone numbers of past patients. Talk to them. There are horror stories out there. Do not allow yourself to be talked into a vestibulectomy if all you need is a minor resection. Despite the pain and expense and recovery time, it is better to get a second operation if you need one than to have healthy tissue removed or damaged.
The typical claims made are that 60% of women will benefit from surgery and 10% may be made worse. This first number is lessened, however, by the chance of pain recurrence, which tends to be high. If you do have surgery, make sure your doctor is aware of the literature suggesting recurrence rates are lower if a course of interferon shots is undertaken at the same time as the surgery. For any "success rate" your doctor quotes you, make sure you ask whether he or she has followed up with the patients a year or two later.
Yeast problems seem to come in two varieties: vaginal yeast infections (frequent or resistant), and so-called "systemic" (or intestinal, at least) yeast infections, which may make the vaginal ones more likely. Most women agree that antifungal creams (the "-azole" creams) do NOT work and may make the pain worse. Intestinal yeast treatment has two goals: to KILL the yeast present, and REPLACE it with "good" bacteria. Many people get yeast overgrowth while taking antibiotics because the drugs kill the "good" bacteria, which allows the yeast to gain purchase in the intestines, and prevents the bacteria from recolonizing. In an intestinal yeast infection, then, you really need to take both steps -- both getting rid of the yeast while also supplying the kind of bacteri that should be there.
Some women have recently become aware of an exciting body of research on yeast allergies and vaginal yeast infections (see "Marjorie Crandall, PhD" in the "Resources" section) in which the yeast burrows into the submucosal (deeper) layers of skin and hence neither shows up in cultures nor is responsive to topical antifungals. If you suspect you may have these conditions, you can be tested for the presence of elevated anti-candida IgE antibodies in your vaginal discharge. Yeast allergies can be helped by hyposensitization (injection with tiny amounts of the allergen), just like other allergies. Allergies and submucosal infections can also be treated by a long course of oral antifungals. Be aware that if your problems ARE yeast-related, your treatment may initially make you feel much worse, because the dying yeast release toxins into your body. This "die-off" reaction is only temporary.
Boric acid is a white powder you can buy very cheaply at places like Wal-Mart. (Look for it in the first aid supplies section.) You can make it into a vaginal suppository by filling small empty gelatin capsules with it. If you don't have access to empty gel caps, you can also have a pharmacy create the suppositories for you if you have a prescription from your doctor. Boric acid alters vaginal pH and is extremely effective at stopping yeast infections. Some women find that the boric acid causes mild burning when the capsule dissolves; the powder itself is also rather sharp and can cause irritation. It is normal for this treatment to cause a thick discharge, which can be uncomfortable, depending on where you are in your cycle (if the discharge isn't too acidic, it can actually be soothing). You may want to use a pad the next morning. Try using one suppository at bedtime every other day for five or six days. For chronic yeast infections, try one capsule per week. Note that, like topical antifungals, this will only help kill the yeast in the surface layers of the skin.
Doesn't it kill roaches?
Probably. Which says nothing about its effectiveness at also killing yeast. MOST of the treatments available are potentially harmful or toxic; the trick is in using them judiciously for how they can help us. Boric acid CAN be absorbed systemically and thus should not be used in large doses for a long period of time. There is only a single instance of fatality on record resulting from boric acid use, and that came from an accidental large-dose ORAL ingestion.
Dietary modifications will also help: cut sugar, reduce carbohydrates, and eat more vegetables.
These are things that will not cure you, but may make you more comfortable in the meantime (and may assist with healing by breaking the pain cycle).
Oddly, one of the first best things you can do is to learn more about your body. Use a hand mirror and see for yourself EXACTLY where the pain is. There's a huge psychological difference between feeling you have a diffuse pain "somewhere down there" and being able to tell yourself EXACTLY WHICH five square centimeters your life would be different without. Try it -- it really can alter how you mentally represent the pain.
Non-hormone or non-vitamin creams (like vaseline) can soothe by protecting the skin from physical irritants and urine. Over-the-counter vaginal moisturizers (like "Replens") can help, as can sexual lubricants. Check ingredients carefully, however. Many women have a sensitivity to propylene glycol and other preservatives such as parabens that are found in many lubricants (and other products). Some creams contain mineral oil, which moisturizes the surface of the skin only by harmfully drawing out moisture from deeper layers, creating the need for constant use. Oils (even Crisco!) are fine for use on the external vulva, but if you're using something vaginally, try to make sure it's water-soluble.
Spraying your vulva with water after or during urination can help, as can applying vitamin E oil after urination. You can also purchase a home bidet that installs into a standard toilet (info in "Resources").
Sitz bath containers can be purchased at drugstores. The idea behind Sitz baths is to alternate hot and cold water, thus drawing blood into and out of the affected area. Baths with sea salt or baking soda have also been found to help.
There's been a bit of controversy over the application of cold or heat to the vulva. Most agree that heat packs can dry out the skin, thus leading to further problems. Heat in and of itself, however, is probably GOOD for the vulva, as it draws blood (with its nutrients and lymphocytes) into the area. Alternatives to the use of heat packs: hairdryers (also an excellent idea after showering or bathing, particularly if you have problems with yeast infections), or shining a reading lamp on the area. The consensus on the use of cold is that is can provide dramatic temporary relief, but care must be taken that the pack is not TOO cold or the use too frequent, as more damage to the skin may result. Remember, cold keeps blood AWAY from an area, and it is INCREASED vascularization that you want.
Some women have reported that daubing the area with witch hazel is soothing. Be aware that if you have even the tiniest fissures in your skin, this could really burn. Many women also claim that drinking a large amount of water each day -- either bottled or tap -- can really help. Since this is one of the best things you can do for your health anyway, it's a good place to start.
This is a collection of things that haven't really been fully discussed.
One of the first things doctors seem to want to prescribe are steroid creams, which is strange, because they don't seem to help in most cases and can definitely make things worse. Steroid creams thin the skin, which can lead to more pain. Oral steroids like prednisone may temporarily help the pain but are also powerful drugs that will disrupt your hypothalamic-pituitary axis and thus cause hormone problems (and just plain make you crazy). That being said, steroid creams CAN break the inflammatory cycle, if you have a good response with only short-term use. If you do use either oral or topical steroids, take care to taper the use off gradually so as not to get a rebound effect (and don't expect your doctor to tell you that).
As previously mentioned, don't let a doctor convince you to try surgery as a first option. Be cautious about those who claim to "laser aggressively." Steer clear of ANY surgeon who can't produce the names of satisfied women.
Many of the topical treatments commonly prescribed for HPV will not work, hurt terribly, and can worsen your condition. These include trichloracetic acid (TCA), Efudex, and podophilox (which is actually absorbed systemically and is toxic). The idea behind TCA and podophilox is to destroy the HPV lesion -- which won't work if your form of HPV is subclinical (present without visible indications like warts). The idea behind Efudex is to completely destroy the top layer of skin of the vulva, to allow new healthy skin to grow back. (Efudex is generally the first treatment option for vulvar cancer.) Creams containing very low concentrations of Efudex (below 2%) MIGHT be helpful; creams containing higher levels have given women severe burns on their labia. Be careful!
First, put aside all your gender socialization...
The NVA (National Vulvodynia Association) and VPF (Vulvar Pain Foundation) can refer you to a doctor in your state (hopefully) who knows something about vulvodynia. Please note that this is not the same things as a "Good Housekeeping Seal"; these organizations cannot guarantee the QUALITY of the doctor. Some of the worst horror stories on this list have been about doctors suggested by these organizations.
Doctors seem to come in three basic varieties: those who know nothing about vulvodynia; those who think they know something, but don't and those who know something about it.
Doctors in the first category are fine if they are willing to do some research on their own and consult with the doctors you alert them to. Doctors in the second class are dangerous and tend to be rather defensive. Make it clear to the doctor that you know that many women have to try a number of different treatments before finding one that works for them. Explicitly ask your doctor whether he or she is interested in dealing with a chronic pain case or will lose motivation if the first few treatments don't work. Don't be afraid to ask them for a referral for another provider if it seems that your problems and their interests don't mesh. Don't trust your doctor to provide the least invasive procedures first. Don't assume that a confident tone means knowledge.
Don't be afraid to be a bitch. Be firm, and try to be unemotional. Insist on getting all your questions answered, no matter how long it takes. If you're getting examined, have the doctor let you get dressed before you put your questions to them. Question dubious statements.
Do your homework. Bring printouts of articles, as well as at least an outline of what you hope to accomplish during the appointment, if not an explicit list of questions. Tell your doctor about Glazer's website and the case collaboration feature it has. Tell your doctor about this list -- your anecdotal account of your symptoms is more compelling if you are able to tell (or bring the e-mail) of a dozen other women who experience exactly the same thing. Use positive reinforcement, too, of course: express your gratitude to a doctor who goes the extra mile, and let the NVA and VPF know if you find a particularly good one.
If you do have a horrible experience: (1) feel free to use the list to vent; that's what we're here for. (2) Write a calm letter to the doctor explaining why you aren't coming back. This really is necessary -- otherwise, from the doctor's point of view you mysteriously disappeared (he or she may even count you in his or her "cured" rate!) and the next patient will be as mistreated as you were. (3) Notify the NVA and VPF of your experiences and suggest that the doctor should not be recommended to vulvodynia sufferers.
Some good questions to ask any doctor:
It is important for both you and your partner to recognize that vulvodynia doesn't JUST affect the vulva, but your entire perception of your sexuality. Many relationship problems arise less from the lack of intercourse than from the fears, insecurities, and loss of libido that comes with vulvar pain.
It is important that you not take too much blame on yourself. Would YOU leave your partner if he or she were unable to have sex? Try to identify and reject feelings of guilt -- after all, your partner may be sexually frustrated, but you are both sexually frustrated and in pain.
Remember that you are not being "punished" for being a normal sexual being. Try to explore other ways of intimacy with your partner -- anything that doesn't give you pain. Many women on the list have benefited from exploring other forms of sexuality: drawing inspiration from the creative suggestions generated by the "safe sex" movement, or from Tantra. Although it's difficult, do try to resist painful intercourse "for the sake of the relationship" -- your body will learn an association between sex and pain (if it hasn't already) which can compound libidinal and intimacy difficulties. A sex therapist, couples' counselor, or therapist of some type can be extremely useful. If your partner won't go, go by yourself. An e-mail support/discussion list is also available for the partners of women with vulvar pain (see "Resources"). Both the Vulvar Pain Foundation and National Vulvodynia Association offer support groups -- contact them to see if there is one in your area. It is helpful to talk about your fears with your partner -- both of you might be afraid of emotional or physical abandonment. Communication skills -- being loving and clear, and creating safety and support together -- can build your relationship.
A reality that's hard to face is that this condition can show the true mettle of a relationship. Not all partners WILL be supportive or willing to regard your problem as a problem affecting the two of you. If your partner threatens to leave you for someone else, encourage them. It can be extraordinarily difficult to find out that the person you love doesn't share the degree of commitment that you do, but it's good to find this out as soon as possible, and you deserve (and can find) better.
Many single women feel they have no right "being on the market" when they can't have sex. Bullshit. You have as much right to love and intimacy as anyone else. Finding a partner who agrees with this can be challenging, but is not impossible. There are no rules for when you should tell your partner, but don't feel pressured. You are not "leading him/her on." There are probably PLENTY of large and small secrets your date is withholding until he or she knows you better (some things they probably won't tell you until after you're married!); there is no immediate-disclosure law for vulvodynia. Avoid direct lies that your date may angrily call you on later (dropping small hints of a problem to be discussed later can help, but take care: every time the author of this FAQ has done so her partners concluded she had HIV...), but staying vague for a while is not necessarily a bad thing. Take your time and get to know your partner.
When you do tell your date, bear in mind that while you have become an expert on this condition, they have very likely never heard of it. It can be useful to give them copies of articles that have appeared in popular magazines when you bring up the subject, or good URLs. (You might, for instance, tell them that you have a medical condition you need to talk to them about, give them copies of a bunch of info, send them home with it, and then continue your discussion a day or two later.) Your partner will probably be concerned (1) whether you have a sexually transmitted disease, (2) whether this isn't REALLY all in your head (be patient with them, they don't know all that you do about this), and (3) whether this isn't just a weird excuse not to have sex with them. Providing them with information from mainstream publications or web pages -- especially university-sponsored ones -- can alleviate all these fears at once.
Remember that in the absence of any other information, they are likely to take cues from you. If you burst into tears as you explain the problem and tell them that no one will ever want you and you can't be in a relationship, you are likely to get a very different response than if you matter-of-factly tell them (after they've read the information that you've given them) what you can and can't do, what treatments you're trying, and what concerns you have about how this will affect your relationship. This is a MEDICAL problem. It is not your fault, and it does not reflect on your worth as a person or an intimate partner.
Give your date time to absorb all the information before you press them for a reaction. In fact, be wary of an immediate positive response -- they may feel obligated to supply you with one before they've really thought things through, and this will only cause problems later. Make sure they know what they're getting into.
Be aware that no matter how smoothly and expertly you bring up your circumstances, some percentage of your dates (only 13%, in this author's modestly large experience) will have a bad reaction or have no further interest. This is something to do with THEM, not with you, and you're better off without them. Remember, you only need to find one person. Vulvodynia does NOT mean that you'll "end up alone", and you have the added security of knowing that the partner you eventually find loves you for who you really are, and not just for what you can do for them.
RESOURCES (in alphabetically-ordered headings)
DOCTORS AND RESEARCH SCIENTISTS
Jacob Bornstein, M.D. [researching the possible genetics of vvs]
Dept. of Obstetrics and Gynecology
Carmel Medical Center
7, Michal Street, 34362
Marjorie Crandall, Ph.D. [proponent of the yeast-infection theory of vvs]
Yeast Consulting Services
P.O. Box 11157
Torrance, CA 90510
Call to fax
[She has an information packet available for $20, and will do phone consultations for a $30/30 minutes plus $1/minute thereafter.]
Howard Glazer, Ph.D. [proponent of biofeedback]
340 E. 63rd St., Suite 1A
New York, NY 10021
Clive C. Solomons, Ph.D. [proponent of the oxalate theory]
c/o Scientific Connections
P O Box 460427
Glendale CO 80246-0427
John J. Willems, M.D. [proponent of topical estrogen]
Head, Obstetrics and Gynecology
Scripps Clinic and Research Foundation
La Jolla, California
http://www.incontinet.com/kegelpix.htm (-- John Perry's website, place to obtain diagram of pelvic muscles.)
http://www.nettally.com/branwen/rowan (-- Fibromyalgia, vulvodynia, and other medical links, resources, and information, including the low oxalate diet food list and supplement information.)
http://www.angelfire.com/hi/HeidiHomePage (-- covers vulvodynia/vestibulitis, depression, fibromyalgia, and chronic illnesses, with links to other resources.)
Strausz, I. K. _Women's Symptoms: A Comprehensive Guide to Common Symptoms and Diseases: Their Causes and Treatments_ Dell, 1996.
For obtaining this or other books on-line: http://www.amazon.com
ASHA/HPV, PO Box 13827, Research Triangle Park, NC 27709-3827. They put out a newsletter called HPV News and can also connect you with support groups and information in your local area.
http://www.mentalhealth.com/p30.html (-- info on antidepressants)
http://www.hypericumbuyersclub.com (-- inexpensive research-grade St. John's Wort)
Women's International Pharmacy: 800-279-5708. Your doctor must call in the prescription. They sell Estrace, will compound various natural hormone preparations, and have estriol available in a safflower oil/water base or mostly-water base, which may be less irritating for those who are sensitive to Estrace.
Azo test strips -- available in your drugstore. Three tests for $9.99. An economical way to see whether your symptoms really are due to a urinary tract infection or not.
Essential Control Systems, (800-537-3779) (-- willing to send info on biofeedback trainers and answer any questions you may have.)
Harmony/Seventh Generation, (800-869-3446) (-- they make natural cotton clothing and hygienic products, as well as cleaning supplies without toxic chemicals in them.)
http://www.lubidet.com (-- makes the home bidet. Mention that you're a VPF member and get a discount)
Balch, J. F., & Balch, P. A. _Prescription for Nutritional Healing_ (19.95 US; 27.99 Canadian)
http://www.vitaminconnection.com/pl/pr_pycnogenol.html (-- grape seed extract info.)
N.E.E.D.S. -- http://www.needs.com/ or 800-634-1380
http://www.vitaminshoppe.com, or 800-223-1216
Schiff Products -- 800-526-6251 (-- cheap glucosamine)
The American Association of Sex Educators, Counselors, and Therapists
P.O Box 238
Mount Vernon, IA 52314-0238
(319) 895-8407(319) 895-6203 (fax)
The National Vulvodynia Association
PO Box 4491
Silver Springs, MD 20914-4491
The Vulvar Pain Foundation
Post Office Drawer 177
Graham, NC 27253
The Vulval Pain Society
PO Box 514
SL1 2BP UK
Society for the Study of Vulvar Disease (ISSVD)
Contact: Dr. Marilynne McKay, 1-708-320-9830.
PARTNERS' SUPPORT LIST
POPULAR MEDIA ARTICLES
Oct. 1996 _Natural Health_ "Woman to Woman"
Oct. 1996 _Redbook_ "The Secret Pain that Kept Us Apart"
Aug. 1997 _Ladies Home Journal_ "Too Embarassed to Ask"
bibliography at the www.vulvodynia.com website
http://www.medscape.com/jobson/MedTrib/obgyn/1997/v04.n08/VaginalPHCheapEfficientWay.html (--this one and the previous two on vaginal pH testing, and cytolitic vaginosis).
SEXUALITY AND PAIN
Arnand, M. _The Art of Sexual Estacsy_ Tarcher/Pedigree-Putnam Publishing.
Henderson, J. _The Lover Within_ Station Hill Press.
Visit Dr. Glazer's Webpage "Vulvodynia.com"