N National V Vulvodynia AA Association

Volume XV Issue III Winter 2010 Chronic Vulvar Pain and Tarlov Questions and Answers with Anne Louise Oaklander, MD, PhD

Dr. Oaklander is associate professor of at Harvard Medical School and assistant in neuropathology at the Massachusetts General Hospital. She is a senior attending physician in the hospital’s neurology service and the director of the neurodiagnostic skin biopsy service. This past August, Dr. Oaklander presented a poster at the International Association for the Study of Pain’s World Congress summarizing the results of the first study investigating the relationship between Tarlov cysts and chronic vulvar or pelvic pain.

NVA: What are Tarlov cysts? NVA: Why aren’t the majority of medical pro- Dr. Oaklander: Tarlov cysts, also known as peri- viders knowledgeable about Tarlov cysts? neural cysts, are fluid-filled sacs that can damage Dr. Oaklander: Tarlov’s early publication is the sensory nerves as they exit the spine. They are only one that has been widely read and cited, and most common in the sacrum, the thick triangular his first impression that these cysts were clini- Thebone classic at the definition base of ofthe vulvodynia spine, where is “vulvar the nerves pain, callythree toirrelevant six months persists duration to without this day. a verifiable Additionally, cause.’ burning,that supply rawness sensation or irritation” to the present pelvis for originate. more than sixIn It was further decided that descriptors such as general- months, which cannot be attributed to any other cause. aboutized or 75 localized percent be of used patients with an with accurate Tarlov pain cysts map, arebut Vulvar1938, vestibulitis American is neurosurgeon a subset of vulvodynia Isidore in Tarlov which womenthat further and sub-classification, most spine surgeons such asare provoked men. Both vs. thewas burning the first or pain to identify only occurs these with cysts light in touch a cadaver in the groupsunprovoked, are mutually was not warranted. reluctant toFor discuss the remainder urogeni of- vestibule,study. Tarlov the area later immediately learned that surrounding in some the patients, vaginal talthis problems article, the and terms sexual generalized difficulties. vulvodynia Furthermore, and vul- opening.the cysts The are associatedInternational with Society symptoms for the of Study chron of- mostvar vestibulitis women with will bechronic utilized vulvar, for simplicity. pelvic or uro- Vulvovaginalic vulvar and/or Disease pelvic developed pain that a new radiate set of definitions from the for vulvodynia in 2003. They created two subgroups: (i) genital pain consult their gynecologists, who do nerve root (Tarlov 1952). localized vulvodynia and (ii) generalized vulvodynia. See PUDENDALSee TARLOV NEURALGIA, CYSTS, page 2

MultilevelThe Medical Nerve Management Blocks in the ofTreatment Vulvodynia of Vulvodynia By Andreaince vulvodynia J. Rapkin, is not simplyMD and a gynecological John S. McDonald,condition, many MD experts favor a multi-disciplinary Dr.S Rapkinapproach is a professor to its management. of obstetrics Treatmentand gynecology may atinvolve the David visiting Geffen a gynecologistSchool of Medicine or vulvovaginal at the spe- Universitycialist, of California dermatologist, – Los Angeles neurologist, (UCLA) pain and management the director of specialist, the UCLA Pelvicurogynecologist, Pain Clinic. Dr.and/or McDonald physical therapist.is the chairman Also, of because the department vulvodynia of anesthesiology often affects and a woman’s the director sexual of the relationships residency training and programemotional at thewell- being,Harbor-UCLA health Medicalcare providers Center. sometimes recommend consulting a psychologist or sex therapist. any characteristics of neuropathic or nerve pain, such as burning and extreme sensitivity to both painful Becauseand we nonpainful don't know stimuli what (hyperalgesia causes vulvodynia, and allodynia, treatment respectively), is directed are also towards classic features alleviating of vulvodynia. symptoms andM usuallyBecause provides there are partial no abnormal or complete anatomic pain relief.features Some associated women with experience vulvodynia, relief the with pain a hasparticular been characterized as neuropathic in etiology, and in some cases, a variant of pudendal neuropathy or neuralgia. treatment,Neuropathic while pain isothers a chronic do not abnormal respond state to itthat or evolves experience over unacceptabletime, ultimately side leading effects. to a numberNo single of changestreatment in isthe appropriate central nervous for allsystem women (brain with and vulvodynia ) and peripheralit may take (somatic time for and a autonomic) woman to nervousfind a treatment,system. or SeeSee NERVE MANAGEMENT, BLOCKS, page page 10 8 Tarlov Cysts (from page 1)

not usually test for neurological lesions as part of Kelft wrote, “This evidence suggests that MRI of their evaluation. the lumbosacral spine should be one of the early investigations in a patient with chronic perine- NVA: What sparked your interest in Tarlov al pain.” To this day, however, spine MRIs are cysts? not widely offered to women with unexplained Dr. Oaklander: In 2005, a woman in her for- chronic vulvar pain. I found this figure stunning ties who had suffered tremendously with vul- and hard to believe, so we are now conducting vodynia since her teens came to me for help. I the first large population-based epidemiological sent her for magnetic resonance imaging (MRI) study of Tarlov cysts at Massachusetts General of her spine, which showed multiple large Tarlov Hospital (MGH) to learn more about their preva- cysts. I wasn’t sure if, or more importantly how, lence and clinical significance. the cysts related to her symptoms, so I searched the medical literature. I found a paper by van NVA: Please tell us more about your study and de Kelft (1993) stating that 75 percent of 20 pa- preliminary findings. tients with unexplained chronic perineal pain had Dr. Oaklander: We electronically searched re- sacral cysts visible on MRI. Further, of the 12 ports of lumbar MRI or CT imaging performed at patients who agreed to surgical treatment, all but MGH between 1992 and 2009 to identify 1,305 two were symptom-free after 18 months. Van de records in which the terms “Tarlov” or “perineu- ral” appeared. We found that almost two percent of patients undergoing lumbosacral MRIs had NVA News National Vulvodynia Association Tarlov cysts, 75 percent of whom were female. P.O. Box 4491, Silver Spring, Md. 20914-4491 Prevalence of Tarlov cysts was also highly age- (301) 299-0775; FAX: (301) 299-3999 correlated; patients 65 years or older were 12 www.nva.org times more likely to have them compared to NVA News is published three times per year. those under age 35.

Editor: NVA: Do we know how common chronic vul- Phyllis Mate var pain is in women with Tarlov cysts? Contributor: Chris Veasley Layout: Andrea Hall Dr. Oaklander: Unfortunately this has yet to be studied. Tarlov cysts are most commonly located

The National Vulvodynia Association is an educational, at the second and third sacral nerve roots. When nonprofit organization founded to disseminate informa- symptomatic, these cysts cause pain anywhere tion on treatment options for vulvodynia. The NVA between the waist and the knees. Depending on recommends that you consult your own health care practitioner to determine which course of treatment or their exact location and size, some women only medication is appropriate for you. experience vulvar pain, but it is more common for women to experience both vulvar and buttock NVA News, copyright 2010 by the National Vulvo- pain. Some also report painful sex and many are dynia Association, Inc. All Rights Reserved. Permis- unable to wear pants or even underwear. Because sion for republication of any article herein may be the spinal cord is so small at the sacral level, the obtained by contacting the NVA Executive Director at 301-299-0775. See TARLOV CYSTS, page 3

Page 2 NVA News/Winter 2010 Tarlov Cysts (from page 2) side of the spine where the cysts reside does not she should probably have MRI of her lumbar and always predict the side of pain. Affected women sacral spinal cord. An MRI is not only non-in- may have pain on both sides of the vulva, but- vasive and safe (because it does not involve ra- tocks or other affected areas of the body. Most diation), it is indicated for any unexplained focal have difficulty with sitting and their pain is not neurological problem in which a structural lesion significantly altered by standing. Some may ex- is suspected. perience relief after lying down, because this po- sition reduces the fluid pressure in the . NVA: How are Tarlov cysts treated? How ef- fective are the treatments? NVA: What other symptoms do women experience? Dr. Oaklander: There are two classes of disease- Dr. Oaklander: If the cysts increase in size over modifying treatment for Tarlov cysts. Due to a time, patients may also report , pain that lack of research, we don’t know which treatment radiates down the back of the leg. They may also is best for which patients, but small studies and experience difficulty with urination and defeca- clinical experience have demonstrated the effi- tion, as well as sexual problems. When the cysts cacy and safety of both procedures. Patients can become very large, women may experience leg have their cysts surgically removed, which typi- weakness that interferes with their ability to cally involves complex , or the cysts can walk, and the cysts begin to erode the bones of be drained using CT-guided imaging to ensure the sacrum, predisposing them to fractures. If the the correct placement of the needle. Draining cysts leak spinal fluid, patients may experience alone does not work for most patients, because and/or low back pain. the fluid re-accumulates. Once we verify that the main fluid compartment around the spinal cord NVA: Which test(s) can be done to determine and nerve roots is not leaking fluid into the cyst, if a woman has Tarlov cysts? we recommend that draining be combined with Dr. Oaklander: An MRI is the preferred diag- the injection of a tissue sealant. The advantage nostic test. Comparison studies show that MRI of surgery is that it is more likely to resolve the is more sensitive than CT scan and that x-rays condition, but it is also more invasive because can only detect very large cysts that are eroding it involves an open-back procedure, with a lon- bone. A correct diagnosis is essential to avoid un- ger recovery time. Injection of sealant is clearly necessary procedures. Once a diagnosis is made, less invasive, but less likely to be a permanent we are able to put women on a logical treatment solution. Additionally, if a patient first has the path to prevent worsening of symptoms, and in fluid drained and then needs to have surgery, the some cases, eliminate the cysts. surgery may be more difficult and less effective. These treatments are not widely available, forc- I would like to clarify that MRIs should not be the ing many patients to travel out of state to find a first test ordered for women with chronic vulvar practitioner experienced in these procedures. pain. Routine tests for known causes of vulvar disease, such as infection and dermatoses, should Following treatment, symptoms may either im- always be performed first; however, if a woman prove substantially, go away entirely, or if the has otherwise unexplained chronic vulvar, pel- vic and/or urogenital pain after numerous tests, See TARLOV CYSTS, page 4

NVA News/Winter 2010 Page 3 Tarlov Cysts (from page 3) patient has had long-standing cysts and the as- References: sociated nerve damage is too severe, symptoms may persist. At that point, treatment is palliative Hiers RH, Long D, North RB, Oaklander AL. and involves the use of medications with dem- Hiding in plain sight: a case of Tarlov perineural onstrated efficacy for treating neuropathic pain cysts. The Journal of Pain 11(9):833-7, 2010. (e.g., anticonvulsants, tricyclic antidepressants, selective serotonin norepinephrine reuptake in- Oaklander AL, Hiers RH, Devan P. Epide- hibitors). There is no evidence suggesting that al- miological study of Tarlov nerve root cysts: an ternative medicine or physical therapy does any overlooked treatable cause of chronic pain and good for patients with Tarlov cysts, but implanta- dysfunction. Presented at the International Asso- tion of small electrical stimulators near the nerve ciation for the Study of Pain’s 13th World Con- roots, spinal cord, and perhaps the brain, may be gress, August 2010, Montreal, Canada. worth considering. Tarlov IM. Perineural cysts of the spinal nerve NVA: What general advice do you have for roots. Arch Neurol Psychiatry 40:1067-74, women with vulvodynia who suspect they may 1938. have Tarlov cysts? Dr. Oaklander: The bottom line is that MRI is Tarlov IM. Cysts (perineurial) of the sacral nerve indicated for any woman with long-standing vul- roots: another cause of the sciatic or sacral cauda var pain of unknown cause. Women with vulvo- equina syndrome. J Neuropathol Exp Neurol 11 dynia deserve the same standard of care as those (1):88-89, 1952. with neurological problems affecting other areas of the body! This is mainstream medicine and Rexed B. Arachnoidal proliferations with cyst there is nothing experimental about it. For these formation in human spinal nerve roots at their reasons, women should not have any problem entry into the intervertebral foramina; prelimi- obtaining insurance coverage for the test. nary report. J Neurosurg 4:414-421, 1947.

Additionally, it is essential for women whose im- van de Kelft E, van Vyve M. Sacral meningeal aging shows Tarlov cysts (or any other type of cysts and perineal pain. Lancet 341:500-501, spinal or nerve root lesion) to obtain a neurologi- 1993. n cal or orthopedic evaluation. They should know, however, that the vast majority of spine special- ists are unfamiliar with Tarlov cysts and, as a re- sult, may not be able to offer sound advice. In Moving? this case, patients must be their own advocates. New E-mail Address? They should print medical literature on Tarlov cysts and take it with them to their appointments. Please notify us by sending an If women are unsatisfied with the quality of their medical care, they should seek help from a e-mail to [email protected] or calling knowledgeable specialist. Additional information 301-949-5114. Thank you. can be found on the Tarlov Cyst Disease Founda- tion’s web site: www.tarlovcystfoundation.org.

Page 4 NVA News/Winter 2010 NVA Year in Review: 2010 As proud as we are of our accomplishments, we ects described below. Additionally, because of our recognize that none of them would be possible commitment to accelerating vulvodynia research, without the support of our committed donors. The NVA will now solicit research applications twice following is a summary of the NVA’s most signifi- a year. The next group of grant recipients will be cant achievements of the past year. announced in April 2011.

Expansion of Vulvodynia Treatment Registry University of North Carolina – Chapel Hill In fall 2009, thanks to the generosity of a longtime Drs. Mark Tommerdahl and Denniz Zolnoun of the donor, NVA funded the first national multi-center University of North Carolina – Chapel Hill, will Vulvodynia Treatment Registry. With continued use their NVA grant to conduct the first large-scale support from this donor and a generous comple- study investigating the underlying mechanisms of mentary grant from The Patty Brisben Foundation, Generalized Vulvodynia. They will compare peri- we have now expanded the Registry project to five pheral and central nervous system pain processing data collection sites in Florida, Arkansas, Colo- in three groups: (i) women with Generalized Vul- rado and Washington, DC, and continue to work vodynia, (ii) women with Provoked Vestibulodyn- on adding three more sites in Ohio, Maryland and ia (PVD, aka vulvar vestibulitis), and (iii) women California by spring 2011. We funded this exten- with both vulvodynia subtypes. Understanding the sive groundbreaking study because it is unaccept- mechanisms that initiate and maintain abnormal able for women to have no scientific informa- pain processing at all levels of the nervous sys- tion on which to base their treatment choices. In tem – the brain, spinal cord and peripheral nerves addition to gathering preliminary data on which – will help to determine which therapeutic agents treatments are most effective for vulvodynia, the are likely to be effective in the treatment of wom- Registry aims to identify factors that predict treat- en with Generalized Vulvodynia. ment success and will guide the development of large controlled trials of promising therapies. Ad- Cornell University ditional information on the Registry project and Drs. Steven Witkin and William Ledger of Cornell its investigators can be viewed on NVA’s web site: University received an NVA grant to analyze the www.nva.org/treatmentregistry.html. types of bacterial organisms found in the vagina and vulva of women with PVD. They are investi- NVA Accelerates Vulvodynia Research gating the relationship between specific bacterial Since the creation of our Medical Research Fund in organisms, genetic makeup and degree of vestibu- 1997, we have awarded almost $700,000 to more lar , helping to clarify how the inter- than 40 vulvodynia research projects. Many inves- action of these three factors affects susceptibility tigators have used data collected with NVA grants to developing PVD. To read summaries of other to secure multi-million dollar funding from insti- NVA-funded projects, please visit www.nva.org/ tutions such as the National Institutes of Health. research_fund.html. As a result of our donors’ generous support, NVA was able to allocate 50 percent of our 2010 budget NVA Encourages Careers in Vulvodynia to funding medical research. In addition to sup- In 2006, NVA established the Dr. Stanley C. Ma- porting the Vulvodynia Treatment Registry, NVA rinoff Vulvodynia Career Development Award to is currently supporting 16 studies. In 2010, our Executive Board approved grants for the two proj- See YEAR IN REVIEW page 6

NVA News/Winter 2010 Page 5 Year in Review (from page 5)

encourage medical professionals to pursue a clini- ity and reliability of 3D transperineal ultrasound cal and/or academic interest in vulvodynia. The (a new imaging device) to measure pelvic floor purpose of the award is to provide seed money muscle function in women with the disorder. To for medical research, the establishment or en- read summaries of all NVA-funded Career De- hancement of a vulvar pain clinic, or a written velopment Awards, visit: www.nva.org/career_ publication on vulvodynia. The NVA’s intent is to development_award.html. encourage a medical professional’s interest in this field and enable him/her to pursue further clinical NVA Funds New Vulvodynia Clinic or academic opportunities. Over the past four years, NVA has funded the cre- ation of vulvar pain clinics in New Jersey, Ten- The 2010 recipient of the Career Award was Dr. nessee and Michigan. In early 2010, we awarded Ruby Nguyen, an epidemiologist at the University a grant to Danielle Tonelli, DO, to start a vulvar of Minnesota, who is conducting the firstprospec - pain clinic in Milwaukee, Wisconsin. Dr. Tonelli tive study of pregnant women with vulvodynia. is a fellowship-trained women’s health specialist For many years, women with vulvodynia have with board certification in family medicine and asked health care providers and NVA about the currently serves as co-clinical director of the Cen- effect of pregnancy and childbirth on vulvodynia ter for Optimal Health and Wellness at the Aurora and the answers have been based on anecdotal Women’s Pavilion (AWP) in Milwaukee. AWP evidence. Finally, Dr. Nguyen is now investigat- demonstrated its support of her work by match- ing whether there is a change in the severity of ing the NVA’s grant. Dr. Tonelli will develop and vulvar pain during pregnancy and the postpartum implement educational programs for women with period. vulvodynia and medical professionals. “With the establishment of the AWP Vulvar Pain Clinic, NVA’s Executive Board recently selected the 2011 women in our community and their providers will Career Award recipients. Ahinoam Lev-Sagie, now have a local center with a full range of servi- MD, an obstetrician-gynecologist at Hadassah Uni- ces, from outreach and education to compassion- versity Hospital in Israel, spent several years in ate patient care,” says Dr. Tonelli. the United States training as a specialist in vul- vovaginal disorders under Drs. Paul Nyirjesy, Ste- Updated Tutorial Educates Medical Professionals ven Witkin and Lynette Margesson. Currently, she Thanks again to the generous support of The Pat- directs a Vulvar Pain Clinic at Hadassah. She will ty Brisben Foundation, thousands of health care use her NVA award to conduct a randomized pla- providers have now viewed the updated version cebo-controlled trial to investigate the efficacy of of NVA’s online course, Vulvodynia: Integrating low-level laser therapy in the treatment of PVD. Current Knowledge into Clinical Practice, which offers them Continuing Medical Education cred- The second recipient, Stéphanie Thibault-Gagnon, its. We also attended several national health care PT, is a physical therapist and clinical researcher conferences this year, distributing thousands of at Queen’s University in Canada. In preparation educational packets to health care providers spe- for the development of a large controlled trial to cializing in vulvovaginal disorders, gynecology investigate the efficacy of physical therapy treat- and women’s health. ment in women with PVD, she will test the valid- See YEAR IN REVIEW page 7

Page 6 NVA News/Winter 2010 Year in Review (from page 6)

New Booklets for Women with Vulvodynia impact study on vulvodynia. From an economic Since July, NVA has disseminated thousands of our impact survey, analysts can calculate the extent to new patient booklets to women with vulvodynia which a particular health condition impacts the na- and to health care professionals who specialize in tion’s economy. The information gathering portion its treatment. Written from both the gynecological of this study ended in December, and Dr. Shi’s re- and chronic pain perspectives, our updated patient search team is currently analyzing the data, which self-help guide, I Have Vulvodynia – What Do I will be published in a medical journal in 2011. Need to Know?, features important self-help strat- NVA will be able to use this information in our egies for alleviating vulvar pain and maintaining continued effort to persuade Congress and federal sexual intimacy, while helping women with vul- health agencies to increase vulvodynia research. vodynia to make educated decisions about their health care. The first of three new publications, Progress in NIH Research Funding Vulvodynia, Pregnancy and Childbirth, is the only The Eunice Kennedy Shriver National Institute of resource of its kind for women with vulvodynia Child Health and Human Development (NICHD) who are pregnant or want to conceive. This booklet is responsible for funding the majority of vulvo- covers conception through the postpartum period, dynia research at the NIH. In early August, NVA dealing with issues such as alleviating vulvar pain met with NICHD’s new director, Dr. Alan Gutt- during pregnancy and minimizing vulvar trauma macher, to discuss a strategic plan for increasing during childbirth. Another booklet, My Partner NICHD-funded vulvodynia research next year. Has Vulvodynia – What Do I Need to Know?, gives Because few investigators familiar with vulvo- partners a better understanding of the challenges a dynia have been included in prior NIH review woman with vulvodynia faces and discusses how committees, Dr. Guttmacher committed to organ- they can show their support. Lastly, How to Apply izing a special study section to review vulvodynia for Disability Benefits, guides women with vulvo- research applications during the next three years, dynia who are unable to work through the process and asked NVA to submit for consideration as re- of applying to the Social Security Administration viewers the names of basic and clinical scientists, for disability benefits. as well as members of the public. Since NICHD has not held a vulvodynia conference in six years, In November, NVA received a grant from Purdue Dr. Guttmacher also committed to organizing a Pharma, L.P., to support the translation into Span- vulvodynia conference to be held in spring/sum- ish of our introductory brochure and several sec- mer 2011. NVA will serve as a member of the tions of our web site. Both projects will be com- planning committee. In preparation for the NIH pleted by summer 2011. workshop, the NVA collaborated with Drs. David Foster, Gloria Bachmann and Candace Brown, First Economic Impact Study on Vulvodynia and held a meeting of vulvodynia researchers In cooperation with Wendy Max, PhD, adjunct pro- funded by the NVA, NIH and the Canadian Insti- fessor of medical economics at the University of tutes of Health Research. At the meeting, 13 sci- California, San Francisco, and Lizheng Shi, PhD, entists presented data from their research projects assistant professor in the department of health sys- and the group identified critical knowledge gaps. tem management at Tulane University School of Public Health, NVA conducted the first economic See YEAR IN REVIEW page 8

NVA News/Winter 2010 Page 7 Year in Review (from page 7)

At NICHD's request, we will submit the proceed- The report’s key findings are: (i) up to 50 million ings for their consideration in planning the 2011 American women suffer from one or more of these conference, in addition to publishing them in a chronic pain disorders; (ii) our country’s failure to medical journal. support an adequate research effort and train med- ical professionals in the appropriate diagnosis and Campaign to End Chronic Pain in Women treatment of these six conditions adds as much as In May, the NVA and other organizations of $80 billion a year in direct and indirect costs to the Overlapping Conditions Alliance (OCA) America’s annual health care bill, and (iii) despite launched the Campaign to End Chronic Pain this enormous burden, the NIH’s research invest- in Women at a Capitol Hill briefing attended by ment in the six conditions averaged only $1.33 per more than 30 congressional staffers. The cam- affected woman in 2009! paign’s aim is to increase federal funds allocated to both disorder-specific and collaborative scien- The report’s remarkable findings enabled us to tific research on six chronic pain conditions that make significant progress in the past six months. often co-exist and either solely or disproportion- In August, U.S. Representatives Lois Capps ately impact women: vulvodynia, fibromyalgia, (D-CA) and Tammy Baldwin (D-WI) requested temporomandibular disorders, endometriosis, in- a congressional hearing to address these overlap- terstitial cystitis and chronic fatigue syndrome. ping pain conditions. We were also successful in including strong language in the FY2011 Appro- At the briefing, held in cooperation with the Con- priations Bill and the NIH responded that it will gressional Caucus for Women’s Issues, the OCA assemble the first Trans-Institute Working Group released a groundbreaking report, Chronic Pain on this topic. Next year, the group will bring to- in Women: Neglect, Dismissal and Discrimination gether a diverse cross-section of clinical and basic (see www.endwomenspain.org), which details the science researchers and convene a scientific meet- staggering human and financial toll of these pain ing on the disorders, with the aim of developing a disorders and offers policy solutions to improve strategic research plan to identify both unique and the quality of medical care for affected women. shared underlying mechanisms. n

Management pantyhose. Women should use a dermatologically- approved detergent and avoid the use of fabric (from page 1) softener on undergarments. Double-rinsing under- combination of treatments, that alleviates her pain. wear and other clothing that comes into contact with the vulva may also be helpful. Discontinuing Self-Help Strategies the use of bubble bath, feminine hygiene products Utilizing self-help strategies, such as the elimina- and perfumed creams or soaps is strongly recom- tion of potential irritants, is typically the first step mended. The use of lukewarm or cool sitz baths in treatment. This may include wearing all-white and/or applying ice or a frozen blue gel pack cotton underwear, loose-fitting pants or skirts wrapped in a hand towel can help relieve burn- and thigh-high or knee-high stockings instead of See MANAGEMENT, page 9

Page 8 NVA News/Winter 2010 Management (from page 8) ing and irritation. Some women find sitting on a time, include , nausea, insomnia, sexual donut-shaped cushion to be helpful, as well as in- dysfunction, dry mouth and dizziness. It is impor- terspersing periods of standing and sitting during tant to understand that it can take many weeks to the day. For additional self-help strategies, please months to reach a dose that will alleviate pain. If visit www.nva.org/Self_Help_Tips.html. you decide to stop taking a SNRI, it should be dis- continued slowly with the advice of your health Most Common Treatments care provider. Oral “Pain-Blocking” Medications Medications that are effective in alleviating other Anticonvulsants (medications intended to inhibit chronic pain conditions, such as Tricyclic Antide- seizures) can also be effective in controlling some pressants (TCAs), are often used in the treatment chronic pain syndromes. For example, the anti- of vulvodynia. Although TCAs were developed convulsant pregabalin is FDA-approved to treat to treat depression, many controlled studies have postherpetic neuralgia, diabetic neuropathy and fi- demonstrated their effectiveness in treating chron- bromyalgia. Anticonvulsants are often prescribed ic pain conditions. For women with vulvodynia for women with vulvodynia, especially when pain or other chronic pain, the dosage is usually much is described as having a “shooting, burning, stab- lower than that used for the treatment of depres- bing or knife-like” component. Unfortunately, sion. To minimize side effects, it is best to start at a the effectiveness of pregabalin, gabapentin, and very low dose and increase the amount gradually; oxcarbazepine in the treatment of vulvodynia has consequently, it can take several weeks to achieve not been tested in large controlled studies. As with a therapeutic level. Common side effects, which TCAs, it is best to start at a very low dose and in- can usually be managed, include drowsiness, dry crease the amount gradually. If you decide to dis- mouth, constipation and dizziness. The severity of continue an anticonvulsant, you should not stop it the side effects depends on which TCA you take, abruptly. e.g., amitriptyline causes stronger side effects than nortriptyline or desipramine. Before discontinuing Pain-relieving opioids, such as oxycodone and hy- a TCA, a woman should discuss how to taper it drocodone, can be very helpful for short-term use gradually with her health care provider. during vulvodynia flares. They can also be used to relieve moderate to severe pain early in treatment, Serotonin-Norepinephrine Reuptake Inhibitors while a woman gradually increases the dosage of (SNRIs), a relatively new type of antidepressant, an antidepressant or anticonvulsant to a therapeu- work differently than the TCAs. These medica- tic level. In severe cases, when more conservative tions are FDA-approved to treat depression and therapies fail to provide relief, long-acting opioids anxiety disorders, as well as certain types of pain, may be used on an ongoing basis. Common side ef- such as fibromyalgia and peripheral neuropa- fects, which can usually be managed, include con- thy. SNRIs are also used “off-label” to treat other stipation, nausea and drowsiness. Opioids should chronic pain disorders. Three SNRIs, venlafax- not be discontinued abruptly, because it is likely ine, duloxetine and milnacipran, have been used that you will experience withdrawal symptoms. to treat vulvodynia, but their effectiveness has not been tested in large controlled studies. The most common side effects, some of which improve over See MANAGEMENT, page 10

NVA News/Winter 2010 Page 9 Management (from page 9)

Topical Medications lization. Modalities such as heat/cold, ultrasound Medications applied directly to the vulva may and electrical stimulation may also be helpful. help to alleviate pain, but some preparations con- In addition, rehabilitation of the pelvic floor mus- tain additive substances that are irritating to the cles may include insertion of a vaginal sensor and skin. Therefore, many vulvodynia experts use the use of a biofeedback machine. The machine compounding pharmacies to make individualized provides visual feedback on the strength of pelvic topical creams and ointments without irritating ad- floor muscles while performing exercises to nor- ditives. Some examples include topical hormonal malize their function. This type of biofeedback is creams, anesthetics and specially formulated com- conducted by specially trained providers and some pounded creams. Topical estrogen cream can im- physical therapists. prove the health of vulvar tissue, particularly when the tissue is thin or dry because of a lack of estro- Nerve Blocks gen. Recently, some experts have also emphasized The pudendal nerve carries pain signals from the the role of the hormone testosterone for women’s vulva to the spinal cord. A nerve block is an in- sexual health and recommend combining estro- jection of anesthetic, often combined with anti- gen and testosterone in a topical cream. Topical inflammatory medication, which ‘breaks up’ the anesthetic cream or ointment provides temporary transmission of the pain signal. In some cases, a pain relief and is applied directly to the vulva prior series of injections, spaced days or weeks apart, to intercourse. Typically, the numbing effect lasts is administered intravaginally or in the epidural 15 to 30 minutes. One study found that long-term space in the lower back (as done during child- nightly use of lidocaine resulted in sustained pain birth). Most women experience short-term relief relief, but in another clinical trial, women re- with this procedure and some experience long- ported increased vestibular sensitivity with daily term relief. One recent study found that women use. Medications that are normally prescribed for with vulvodynia who underwent a series of dif- oral use, such as antidepressants and anticonvul- ferent nerve blocks (vulvar, pudendal and spinal) sants, can also be formulated into a cream or oint- experienced sustained pain relief. ment. Topical preparations either contain a single active ingredient or a combination of ingredients, Surgery (for women with Provoked Vestibulodynia) e.g., an anesthetic and antidepressant. Compound- Surgery is contraindicated for women with Gen- ed topical formulations may be used in conjunc- eralized Vulvodynia. Two surgical procedures are tion with oral medications and other treatments. used for women with Provoked Vestibulodynia (PVD, aka vulvar vestibulitis). Vestibulectomy Pelvic Floor Muscle Therapy with vaginal advancement involves the removal Some women with vulvodynia also have pelvic of a portion (or all) of the vestibule, including floor muscle weakness, spasm and/or instability. the hymen, followed by advancement of internal In addition to evaluating pelvic floor muscles, a vaginal tissue. In a modified vestibulectomy, only physical therapist should assess joints, muscles the superficial painful tissue is removed and there and nerves in the lower half of the body to deter- is no vaginal advancement. Most published out- mine if they play a role in vulvar pain. Treatments come studies are based on vestibulectomy with include exercise, education and manual therapies, such as massage, soft-tissue work and joint mobi- See MANAGEMENT, page 11

Page 10 NVA News/Winter 2010 Management (from page 10) vaginal advancement. It is difficult to compare the ry, women may begin to notice an association that results of surgery studies, however, because dif- they would not otherwise suspect. ferent outcome measures are used and the length of follow-up time differs. Overall success rates for Counseling both procedures range from 60 to 96 percent. Af- Since living with chronic vulvar pain often af- ter surgery, physical therapy and the use of dilators fects a woman’s sexual relationship and may lead are often recommended to improve any remain- to anxiety and/or depression, some women find it ing pelvic floor muscle abnormalities. Careful helps to consult a psychologist or a sex/couples patient selection for surgical treatment is essen- therapist. tial because it increases the likelihood of success. Researchers are studying factors that may predict Complementary or Alternative Medicine success or failure with surgery, but no conclusions Women with vulvodynia, as with all forms of can be drawn at this time. (For additional informa- chronic pain, may benefit from using alternative tion on the two procedures, please see http://o.b5z. therapies in conjunction with traditional medi- net/i/u/10023334/i/Goldstein-_vestibulectomy_ cal treatments. There are many complementary JSM.pdf, and http://learnprovider.nva.org/pdf/ therapies available, including acupuncture, mas- Modified_Vestibulectomy_Diagram.pdf.) sage therapy, relaxation techniques and cognitive behavior therapy. To learn about complementary Neurostimulation or Spinal Infusion Pump treatments, visit the National Center for Comple- In severe cases, when more conservative forms of mentary and Alternative Medicine’s web site, treatment have not provided relief, neurostimu- www.nccam.gov. lation or implantation of a spinal infusion pump may be recommended. Neurostimulation involves Additional Treatments the implantation of an electronic device that deliv- The treatments described above are, by far, the ers low voltage electrical stimulation to the spinal most common ones, but your provider may rec- cord, or a targeted peripheral nerve, with the intent ommend one or more of the following therapies in of substituting a tingling sensation for pain. Spinal your specific case. infusion pumps continually administer very small amounts of medication to the spinal cord and nerve Topical Steroids roots. For additional information on these treat- Topical steroids are used to reduce inflammation ment methods, please visit: www.cumc.columbia. in the vulvar tissue. If your provider thinks that edu/dept/pelvic/treat/neuromodulation.html. inflammation is a factor, he/she may recommend steroids, which are generally used for short peri- Diet Modification ods of time. Some women find that eating a certain food in- creases their pain and that elimination of the food Topical Cromolyn alleviates it. For example, some women eliminate Cromolyn, commonly used to treat asthma due acidic or high-sugar foods. If you want to test for to allergy, is a synthetic compound that prevents food sensitivity, you should eliminate one item or mast cells, which are immune system mediators food group at a time to determine which ones, if any, are affecting you. With the use of a food dia- See MANAGEMENT, page 12

NVA News/Winter 2010 Page 11 Management (from page 11)

of inflammatory reactions, from releasing certain percentage of women report some relief with this chemicals. In recent years, some researchers have regimen, but that there is no difference in the implicated mast cells in the etiology of PVD. Cro- amount of urinary oxalates excreted by women molyn can be compounded into a topical prepa- with vulvodynia and healthy controls. Some prac- ration and applied directly to the vulva. An initial titioners have noted that the low oxalate diet is study showed little efficacy, but patients in this detrimental to one’s overall health because it elim- study had suffered from vulvodynia for a long time inates many healthy foods. and tried many other treatments that were not suc- cessful. At this time, there is no information on the Interferon Injections efficacy of cromolyn in newly diagnosed patients. Interferon is a substance produced by the body that helps to fight infection. In some cases, a se- Subcutaneous Steroid/Anesthetic Injections ries of injections of manufactured interferon have In a few publications, women have reported been injected into the vulva. Although initial stud- symptom improvement after undergoing a series ies of interferon appeared promising, recent stud- of steroid/anesthetic injections into the vestibule ies indicate that interferon is not effective. or other vulvar tissue. These injections are usually administered one week apart for several weeks. Managing Breakthrough Pain Sometimes a relatively brief ‘pain flare’ escalates Botox Injections suddenly and breaks through a woman’s regular Botox, a toxic protein produced by a certain bac- pain management regimen. In addition to a long- teria, is sometimes used to treat muscle spasm. term treatment strategy, it is important for women Recent studies have indicated that it may also in- to discuss with their provider how to handle a pain terfere with pain transmission. For women with flare ahead of time. Some providers will write a vulvodynia and pelvic floor muscle spasm, Botox prescription for a fast-acting narcotic, such as hy- is injected directly into the area(s) of spasm. drocodone, or prescribe another medication to use in this circumstance. Topical Capsaicin Capsaicin, a component of chili peppers that Looking Ahead causes skin irritation, is currently used in topical It is important to remain hopeful and positive, in ointments to relieve neuropathic and other types spite of the fact that you may have to try several of pain. With repeated application of capsaicin, different treatments before achieving significant neurotransmitter levels in nerve cells diminish, pain relief. There is more vulvodynia research leading to a reduction in pain transmission. Ini- being conducted now than ever before, including tial reports of capsaicin use in women with vulvo- the first Vulvodynia Treatment Registry, which dynia indicated moderate pain relief and less pain provides preliminary data on the long-term effec- during intercourse. tiveness of the most commonly used vulvodynia treatments. (See NVA Year in Review on page 5.) Low-Oxalate Diet/Calcium Citrate Supplements In addition to the Registry Project, you can read The recommendation that women follow a low- summaries of treatments studies that are currently oxalate diet and take calcium citrate is controver- enrolling participants on NVA’s web site, www. sial. Controlled studies have shown that a small nva.org/participate.html. n

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