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From the Townsend Letter
November 2006

 

Pain Free 1-2-3
Pelvic Pain Syndromes – Vulvodynia, Interstitial Cystitis, Endometriosis, and Prostadynia
by Jacob Teitelbaum MD


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Pelvic pain can be caused by many processes. When pelvic pain is caused by myofascial/muscle trigger points, treating sleep disorders, hormonal problems, and infections and offering nutritional support can be very helpful. In this column, we'll review vulvodynia, interstitial cystitis, endometriosis, and prostadynia.

Interstitial Cystitis
Interstitial Cystitis (IC) is a bladder problem that causes severe discomfort in approximately 500,000 Americans. Ninety percent of people affected are women, and the condition often occurs in association with other illnesses such as fibromyalgia. Onset of symptoms is often between the ages of 40 and 60. On average, people see five doctors before they find one who is able to make the diagnosis. IC is characterized by severe urinary urgency, frequency, burning, and pain. These symptoms in mild form are common in Chronic Fatigue Syndrome (CFS), fibromyalgia, and chronic pain and are not what I am discussing here. IC is diagnosed when these symptoms are your predominant problem and are often so severe that patients want to have their bladders removed.

There are two main categories of IC. The more common is non-ulcerative and is most often seen in young to middle-aged women. It is associated with normal or increased bladder capacity. The cause of IC is not known, but there are many theories. In all likelihood, it is caused by a number of different problems. One possibility is that there are infectious triggers, which either irritate the bladder directly or cause an autoimmune reaction in which the body attacks itself. The autoimmune theory has recently been getting more support. For whatever reason, the protective inner lining of the bladder (called the GAG or glycosaminoglycan) gets damaged, resulting in severe bladder irritation and pain, urinary urgency and frequency, and decreased bladder capacity. Again, it is important to note that the above symptoms in mild form are very common and are not IC. IC is often associated with vulvar pain and painful intercourse (see "Vulvodynia" below). There is no definitive test for IC, and the diagnosis is based on clinical symptoms and bladder cystoscopy (looking into the bladder with a tube). Other infections need to be ruled out, as does cancer.

Although there is currently no cure for IC, there is much that can be done to relieve the symptoms. Once bacterial infections have been ruled out, I add Elavil 25 mg at bedtime, plus Neurontin. If these are ineffective, a trial of Sinequan and the other anti-seizure medications are worthwhile. The medications Pyridium, which numbs the bladder and turns the urine and sweat light orange, and Urispaz, an anti-spasmodic, can be helpful as well.

I would also treat the patient for presumptive Candida with oral Diflucan for at least three months, which may help as well. Although it has not been well-studied, many physicians suspect that yeast overgrowth, like some other infections, may contribute to IC. A critical part of the anti-yeast/anti-fungal protocol is avoiding sugar, which feeds yeast. Interestingly, Dr. Ward Dean had noted that one person's IC cleared up when she used Xylitol, which looks and tastes like sugar, as a sugar substitute. It is not clear if the Xylitol helped or if simply avoiding the sugar was the reason for the patient's relief. Either way, Xylitol is a good sugar substitute with multiple health benefits, including preventing cavities and osteoporosis, and is worth trying.

It is important to avoid certain foods and also to recognize that vitamins, especially the B vitamins and any that are acidic, can dramatically irritate the bladder in some patients with IC. Because of this, supplements, especially one as powerful as the Energy Revitalization System vitamin powder, should be tried in extraordinarily tiny doses (e.g., stick a finger in the powder and lick it) first to make sure they are tolerated. Then, slowly increase the dose if you are able. Take any B vitamins with a large amount of water. Otherwise, they can achieve high concentrations in the bladder. In most people, this causes no problem, but can be irritating in those with IC or bladder spasm. B vitamins are bright yellow, and you can tell when they are concentrated in the urine.

Other treatments include avoiding foods that may aggravate symptoms. Urologists can also put different medications in the bladder, such as DMSO, Heparin, and Elmiron, all of which can be helpful. I recommend Elmiron; it may take three months to work. Take a 100 mg capsule three times a day with water at least one hour before or two hours after eating.

Dr. Stanley Jacob, MD, the physician who helped to get FDA approval for the use of DMSO (instilled into the bladder) for IC has also explored the use of Methyl Sulfonyl Methane (MSM) to treat IC patients. Although MSM takes longer to work (several months), it is better tolerated than the DMSO, which is irritating and results in a garlicky body smell. Dr. Jacob estimates that 80% of his IC patients improve with MSM. He has his patients make a formula of 15% MSM in deionized sterile water and use a catheter to put the solution in their bladders (two to five times a week), holding it in their bladder as long as is comfortable. He gives the MSM intravenously and by mouth (starting with one gram a day and increasing to 18 g daily). For more information, see Dr. Jacob's book, MSM – the Definitive Guide.

Surgery should be a very rare and final resort. Even after the bladder has been removed, half of the IC patients will continue to suffer from pain.1 The good news is that most patients I have seen with IC have received significant relief using some combination of the above treatments.

In another study, lower morning cortisol levels were associated with increased symptoms of IC.2 Many fibromyalgia patients get marked improvement in their IC as part of the overall improvement of their fibromyalgia. One of the treatments I often give is cortisol in a very low dose.

Another natural remedy that has been shown to be helpful in IC is the amino acid L-arginine 500 mg three times a day for three months. In one study of 53 patients with IC, half were given the L-arginine and the other half a placebo. At the end of three months, 29% of the patients on L-arginine were feeling better with less pain and urgency as compared to eight percent in the placebo group. L-arginine helps to make nitric oxide, which can relax the bladder muscle. The enzyme that makes nitric oxide has been shown to be low in interstitial cystitis patients. In another open study using 1500 mg of L-arginine daily, a similar effect was seen. Another study using higher amounts did not show benefit, so more is not better.3

Some health practitioners have found that patients with interstitial cystitis often have chronic extremely alkaline urine. This can be aggravated by excessive coffee and cola intake. PH strip paper can be obtained cheaply at most pharmacies, and one can test multiple urine samples at home to see if the pH is regularly over 7.0. In addition, certain enzyme therapies have been found to be very helpful. They can be obtained from the Enzyme Formulations Company. For interstitial cystitis, use the enzyme URT (enzyme product No. 24). Take four capsules, five times a day between meals; and add the enzyme product called KDY, two capsules every 20 minutes, as needed during flares. In two to four weeks, the symptoms may subside and the products can then be taken just as needed.

Although I have not yet used it for interstitial cystitis, it would be worth trying the herbal saw palmetto, 160 mg twice a day for six weeks, as this relaxes the bladder muscle in those with urinary retention and an enlarged prostate. Research shows that this safe herb promotes smooth muscle (i.e., the bladder muscle) cell relaxation by a number of different mechanisms. It takes six weeks to work.4

Vulvodynia
Vulvodynia is defined as chronic vulvar itching, burning, and/or pain that is significantly uncomfortable. In this condition, vulvar/vaginal pain can either occur only during intercourse or be constantly present. It used to be thought that vulvodynia was fairly rare. Recently, the National Institutes of Health (NIH) funded a study to see how common vulvodynia is. According to Dr. Harlow, associate professor of gynecology at Harvard Medical School, "The preliminary data suggests that possibly millions of women may be affected at some point during their lifetime." The International Society for the Study of Vulvovaginal Disease has proposed several names to describe the different types of vulvodynia. These include the following:

1. Generalized vulvar dysesthesia (VDY) – characterized by pain that can occur anywhere on the vulva
2. Localized vulvar dysesthesia – characterized by pain that can be consistently localized by pushing on certain area(s) of the vulva
3. Mixed dysesthesia – a combination of both of the above

Symptoms can occur anywhere from the pubic bone to the anus. It may be present all of the time, sporadically, or only with intercourse. Many women feel like they have a chronic yeast infection. In others, it feels raw, swollen, or like they are sitting on a hard knot. Burning, electric shocks, and tingling are also often seen. If the area around the urethra (where the urine comes out) is involved, the woman may feel like she has a chronic bladder infection. She may have recurrent urinary urgency, frequency, and burning despite having negative urine cultures. Painful intercourse (dyspareunia) is common, and pain may even occur from tight slacks or underwear.5 Some patients have found that for painful intercourse, topical 0.2 % nitroglycerine cream can give temporary relief (made by a compounding pharmacist in a base without any irritating additives).

In my experience, vulvodynia seems to occur as three main types:
1. Neuropathic This pain appears to be caused by nerve irritation and is sharp, burning, and/or shooting (like nerve pain). In this case, begin with tricyclic anti-depressants (nortriptyline, desipramine, imipramine, doxepin, or Elavil) at 25 to 150 mg each night and/or Neurontin (100 mg to 3600 mg daily) and proceed from there. Be sure to use a sufficient dose of the medications and give them enough time to work; results may take three months. In addition, topical lidocaine (Novocain) gel can be helpful (e.g., EMLA cream). In severe cases, opiates may be necessary.

2. Inflammatory This pain is associated with local inflammation/irritation. In this situation, I would avoid topical creams, etc., especially if they contain parabens, propylene glycol, fragrance, or sorbic acid. Also, do not use topical antifungals or over-the-counter creams. Instead, I routinely give at least a three-month trial of oral Diflucan, 200 mg a day, to be sure any chronic vaginal yeast is eliminated. Occasionally, long-term Diflucan treatment is needed. In this case, check liver blood tests occasionally, because this medicine can cause liver inflammation. Some patients find that avoiding oxalates can help decrease symptoms. In a small subset of patients, one can see a narrow ring of inflamed tissue which reproduces the pain when touched (e.g., with a Q-tip). In these patients, surgically removing that small area of tissue is reasonable.

3. Muscle pain If the pain is deep-seated and not triggered by touching the outer vagina, it may be coming from spasm of the deep pelvic muscles. In this situation, the pain may occur or be accentuated during the deep thrusting of intercourse. For this pain, the general principles for treating muscle pain apply. In addition, EMG biofeedback of the pelvic floor muscles may help. Muscles that are often involved include the obturator internus and pubococcygeus. The sacroiliac joint and disc/spine disease (which can be treated with IV colchicine) also refer pain to the pelvic and rectal areas. Any injury or condition affecting these can trigger pelvic pain.

In general, it is good for patients with vulvodynia to take certain precautions. As noted above, these include avoiding any direct chemical contacts that can irritate the vulva such as sprays, creams, or mini-pads. In addition, it is a good idea to wear loose comfortable clothes and to avoid thong underwear and biking shorts. Sitz baths can also be helpful. Menopausal women should use topical natural estrogen (e.g., estradiol) to prevent atrophy.

Many of my patients with fibromyalgia also have vulvadynia. Like IC, it seems that symptoms of vulvodynia often resolve as their fibromyalgia resolves. I put almost all women with pelvic pain on tricyclics such as Elavil or nortriptyline combined with Neurontin.

Endometriosis
Endometriosis is a complex disorder affecting women during their reproductive years. In this disorder, the tissue that lines the inside of the uterus and sheds each month during the menstrual cycle(called the endometrium) escapes the uterus and attaches to inappropriate areas within the pelvis and abdomen. These growths then respond to changes in estrogen just as tissue does within the uterus. Because of this, women will often get pelvic and abdominal pains that are worse around one's period. These pains are usually worse than menstrual cramps. In addition to pain, women with endometriosis often experience a myriad of other symptoms similar to fibromyalgia (e.g., fatigue, insomnia, widespread achiness), which responds well to our CFS/Fibromyalgia protocol of treating "SHIN": Sleep, Hormonal support, Infections, and Nutrition (see full RCT study report at www.vitality101.com). Although the cause of endometriosis is unknown, there are many theories.

Most doctors forget to consider this diagnosis in evaluating abdominal and pelvic pain. The diagnosis is made by laparoscopy. During this surgical procedure, a small incision is made and a tube is inserted through which the internal organs can be seen and evaluated for endometrial implants. If these implants are seen, the diagnosis is made, and treatment is given with hormonal therapies that attempt to stop ovulation. In addition, other pain medications are given as well. Pregnancy often causes a temporary remission of symptoms. Many alternative therapies are also available.

Prostatitis and Prostadynia
Even in the absence of a full-blown attack of prostatitis, which is usually not subtle and is easily diagnosed and treated, prostate pain is fairly common in men. When no infection is found, it is called prostadynia. It is also known as chronic nonbacterial prostatitis, or chronic pelvic pain syndrome (CPPS). Unfortunately, when doctors do not know what is causing a problem, we often presume it must be psychological (i.e., "I don't know what's wrong with you, so you must be crazy!"). This is what has occurred with prostadynia.

I suspect that prostadynia often occurs because of subtle infections that do not grow on our culture media. These commonly include fungal infections and/or other slow growing antibiotic sensitive infections. In the latter case, the prostate is mildly boggy (indents like a ripe fruit) instead of firm and is tender on examination; to the patient without prostate problems this normally feels like one has to pee, but the prostate is not tender/painful when pressed on. Unfortunately, most doctors consider such an exam normal despite the prostate symptoms. These symptoms include urinary urgency, without there necessarily being much urine present, and burning on urination. The discomfort is often felt on the tip of the penis. Because the infection is not overt, most doctors offer no treatment.

My suspicion is that this is indeed an infectious problem in many cases. This suspicion is bolstered by a recent study showing that Mepartricin (40 mg per day for two months), an antibiotic with antifungal and antiparasitic properties, decreased symptoms by 60% in these patients.6 The study does not totally support infection as the cause, however, because the medication also lowers estrogen levels in the prostate and can work in that way as well. In the study, the authors theorized that lowering estrogen caused the improvement. My experience, however, shows that patients also improve with antibiotics and antifungals that do not lower estrogen. Treatment needs to be given for many months, since anti-infectious agents have difficulty getting into the prostate.

The bioflavonoid vitamin Quercetin (500 mg, twice a day) also decreases prostate symptoms in both prostadynia and prostatitis. In one study, 30 men with severe prostadynia lasting an average of 11 years were treated with either Quercetin 500 mg twice a day or a placebo for one month. There was an average 37% decrease in symptoms with over two-thirds of patients feeling they gained a meaningful benefit.7 Quercetin 500 mg is present in the Energy Revitalization System vitamin powder.

Notes
1. Mulkey VH. Interstitial Cystitis. Continuing Education Topics and Issues. Jan 2001; 1114.
2. Journal of Urology. 2002;167: 1338-1343.
3. Korting, GE, et al. A randomized double-blind trial of Oral L – arginine for treatment of interstitial cystitis. Journal of Urology. 1999;161:558-565.
4. Gutierrez, M, et al. Mechanisms involved in the spasmolytic effect of extracts from Sabal serrulata fruit on smooth muscle. Gen Pharmac. 1996;27:171-176.
5. Stewart, E.G. Diagnosis and management of generalized vulvodynia. Practical Pain Management. May/June 2004;38-41.
6. Urology. 2004;63: 13-16.
7. Shoskes, DA, et al. Quercetin in men with category 3 chronic prostatitis: a preliminary prospective, double-blind, placebo-controlled trial. Urology. 1999; 54: 960-963.

Jacob Teitelbaum is the Medical Director of the Fibromyalgia and Fatigue Centers of America (www.fibroandfatigue.com), which is expanding rapidly and currently recruiting MDs and DOs; senior author of the landmark studies "Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia – a Placebo-controlled Study" & "Effective Treatment of CFS & Fibromyalgia with D-Ribose."; and author of the best-selling book From Fatigued to Fantastic! and the recently released Pain Free 1-2-3 – A Proven Program to Get YOU Pain Free! (McGraw Hill, 2006).

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