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Florida Hospital & University of Central Florida (Orlando, Florida)

In 2009, the NVA funded the first Vulvodynia Treatment Registry to gather data on the efficacy of different vulvodynia treatments. The aim of the Registry is to determine which treatments are most effective, identify factors that can predict success with a particular treatment, and help design large controlled trials of promising therapies.

To speak to the Registry's coordinator, or to participate, please contact Lilia Portilla at 407-303-2721 or lilia.portilla@flhosp.org.  If you are a health care provider and would like to obtain Registry flyers to distribute to your patients, please contact Ms. Portilla.

If you suffer from vulvodynia, and are between the ages of 20 and 45, you may be eligible to participate in this study. Florida Hospital and the University of Central Florida in Orlando are currently enrolling participants. Participation is voluntary, does not include any experimentation and will not change your treatment recommendation. You would be given a thorough gynecological examination, and after the investigators determine the most appropriate course of treatment, you would complete questionnaires so they can determine its effectiveness. Two months after starting a new treatment(s), you would undergo a second gynecological examination to measure your progress. This study does not provide free medical care and treatment.

UCLA (Los Angeles, California)

Treatment of Vaginal Pain with Injection of Numbing Medicine

Andrea Rapkin, MD and John McDonald, MD (Principal Investigators)
For further information, call 310-825-6963

Women ages 18-65 with a diagnosis of vulvodynia, who are not currently pregnant and do not intend on becoming pregnant in the next 3 months, may be interested in a UCLA study to see if vaginal and lower back nerve blocks (injection of local anesthetic medicine) are helpful in treating this disorder.  Pelvic muscle evaluation and psychological questionnaires are included. The study will last up to 7 months and includes 3-5 treatment sessions, a 2-month follow-up visit, and a phone call 2 months after the follow-up visit to assess progress.

University of California (Los Angeles, California)

PROCAIM is a multi-site, web-based research project to evaluate complementary, alternative, and integrative medical (CAIM) therapies, and to help us understand the role of stress in conditions with overlapping symptoms.  Participants register online and complete a series of questionnaires about current symptoms, treatments, current life events, stress and coping, mood, and early childhood experiences.  This is a year-long research project.  The initial online session is expected to take 30-45 minutes.  Six subsequent sessions may take 15-30 minutes.

Log in to our web site: http://www.procaim.org
Register as a New User.
Read the Consent Form.  If you want to participate, "sign" the form by entering or confirming your email address.
Begin to answer the first in a series of questionnaires.  The system will send you email reminders at the time of each scheduled follow-up for one year.  Or write to Dr. Ackerman, Deborah.Ackerman@ucla.edu

You must have access to a computer and an email account, be able to read English, and have a chronic and recurring medical condition such as chronic pelvic pain, vulvodynia, IBS, interstitial cystitis, chronic fatigue syndrome, and others. The research study involves answering a series of computerized questionnaires 7 times over a one-year period.

Dr. Laura Clark (Atlanta, Georgia)

Vulvodynia: Understanding characteristics, pain and effects

Laura Clark, PhD laura@drlauraclark.com
Go to http://drlauraclark.com and click on the appropriate link for women with vulvodynia, women without vulvodynia, and partners of women with vulvodynia.

Eligible participants should be age 18 or older and have access to a private internet connection. Participants will be asked to complete an online vulvodynia survey for women with and without vulvodynia and for partners of women with vulvodynia.

Dr. Laura Clark (Atlanta, Georgia)

Vulvodynia in married women

Laura Clark, PhD laura@drlauraclark.com
Go to http://www.surveymonkey.com/s/RFBVL7L

Eligible participants should be a legally married females with vulvodynia. They should be between the ages of 18 and 80 and not pregnant. This study contains some sexually related questions. Your participation provides authorization to use the data provided for research.
Please encourage your married female friends and family who do NOT have vulvodynia, a chronic pain condition, or a chronic illness to participate by going to http://www.surveymonkey.com/s/RFCNDCW

Genesys Regional Medical Center (Grand Blanc, Michigan)

Treatment of Vulvovaginal Pain with one of three treatments (Singulair, Gabapentin or Cromolyn)

Theodore Fellenbaum, MD (Principal Investigator)
For further information, call 810-606-7714

Women who have had painful intercourse for at least six months and are not allergic to Singulair, Gabapentin or Cromolyn are invited to participate in this study.  Women cannot be pregnant, nursing or planning on getting pregnant.Your participation in this research would require you receive one of three treatments (Singulair, Gabapentin or Cromolyn) for a 17 week period at the Genesys Regional Medical Center, in Grand Blanc.  All study-related items (e.g., medication, test, visits) will be provided to you at no cost. 

Beaumont Hospital-Royal Oak (Royal Oak, Michigan)

A clinical trial of CC-10004 for the treatment of vulvodynia

Karen Sherer, RN, Research Nurse Coordinator
248-551-3565
Principal Investigator – Kenneth M. Peters, MD
Co-Investigator – Donna Carrico, NP,MS

This is a 16-week drug trial. All study medication, exams, blood work, ECGs and questionnaires will be provided at no cost. Women must be between the ages of 18-69, and have a reported history of vulvar pain for at least 3 months.

Minnesota Gynecology & Surgery (Edina, Minnesota)

Treatment of Vulvodynia / Vulvar Vestibulitis with Botox®

James B. Presthus, M.D.
952-893-9100
j.presthus@mngyn.com

Patients with a diagnosis of vulvodynia / vulvar vestibulitis are eligible for a study to evaluate the efficacy of botulinum toxin type A (Botox®). Patients will be enrolled in either a control arm or treatment arm. The study involves 3 visits over 12 weeks and there are no costs to the participants.

Cleveland Clinic (Cleveland, Ohio)

Pregabalin (Lyrica): For the Treatment of Vulvodynia: A Randomized, Double-Blind, Placebo-Controlled Cross-Over Study.

Elle Rich, RN, MPH 
Research Nurse Coordinator
Cleveland Clinic/Department of Ob/Gyn
216.445.8090
PI: Beri Ridgeway, MD

Eligible participants must be age 18 or greater and have been diagnosed with vulvodynia (generalized vulvodynia or vulvar vestibulitis).  Participants must practice reliable form of birth control defined as sterilization, hormonal contraception, abstinence or IUD.  Must not have a contraindication to pregabalin or history of  prior use of pregabalin.  Must be able to attend all follow up visits (5) over the course of the study which will last approximately 11 weeks.  The study drug, other study related tests/procedures/visits will be provided at no cost to you.

Cleveland Clinic (Cleveland, Ohio)

VQOL: A new condition-specific quality of life scale for women with vulvovaginal pain disorders

Linda McElrath, RN
Research Nurse Coordinator
Cleveland Clinic Department of Ob /Gyn
216-444-6881
Principle investigator - John E. Jelovsek, MD

Eligible participants should suffer from vulvar or vaginal pain lasting greater than or equal to 3 months. Enrolled participants are required to be able to complete questionnaires in English language at their initial visit, one week, and three months later.  This study is supported by the American College of Obstetricians and Gynecologists.

Queen’s University (Kingston, Ontario, Canada)

Online study examining women's experiences with gynecological examinations

Sexual Health Research Laboratory, Department of Psychology, Queen’s University (Kingston, Ontario, Canada); 613-533-3276 or shrl@queensu.ca

The Department of Psychology at Queen’s University (Kingston, Ontario, Canada) is looking for female volunteers over 18 years of age and fluent in English to complete a secure online survey examining women’s experiences with gynecological examinations. We are looking for women with gynecological conditions, such as vulvodynia and endometriosis, as well as women without such conditions. 

Your participation would entail completing an online survey, which includes questions about your medical and sexual history, experiences with gynecological examinations, as well as various questionnaires, including measures of psychological and sexual function, body image and doctor-patient interactions. The survey will take 45 to 60 minutes to complete and all information is kept strictly confidential. To thank you for your participation, you will have the option of providing your email address after finishing the survey to be considered for a draw for 50$. Four draws of 50$ each will take place at the end of each month.

If you are interested in participating and would like more information, please contact the Sexual Health Research Laboratory by phone (613) 533-3276, or email, shrl@queensu.ca. Alternatively, you can visit the following website to directly access the survey https://surveys.psyc.queensu.ca/Checkbox/scbwh.aspx.

All calls and email contacts are treated with the strictest confidentiality.

University of Ottawa (Ottawa, Ontario, Canada)

Sexual health of women with vaginismus and provoked vestibulodynia

Rebecca Cherner
(613-562-5800 ext 2220
sexualhealth@uottawa.ca
Elke Reissing, PhD
613-562-5800 ext. 4944
elke.reissing@uottawa.ca

Women (age 18-44) who have always had difficulty with vaginal penetration or have had pain during at least half of all intercourse occasions are invited to participate in a research project on genital pain at the School of Psychology of the University of Ottawa.

Participation involves:

• 2 visits to the laboratory at the University of Ottawa

• completing a set of questionnaires

• watching film clips while physical reaction is measured (no physical contact)

This research is supported by the Social Sciences and Humanities Research Council of Canada and approved by the University of Ottawa Research Ethics Board.

You will be compensated for your time and receive information on treatment options.

University of Ottawa (Ottawa, Ontario, Canada)

Questionnaire study on the sexual health of women with vaginismus and provoked vestibulodynia

Rebecca Cherner
(613-562-5800 ext 2220
sexualhealth@uottawa.ca
Elke Reissing, PhD
613-562-5800 ext. 4944
elke.reissing@uottawa.ca

Women (age 18-44) who have always had difficulty with vaginal penetration or have had pain during half of all intercourse occasions are invited to participate in a research project on genital pain.

Participation involves:

• Completing an online questionnaire available directly at http://www.surveymonkey.com/s/LG7KBNL.

This research is supported by the Social Sciences and Humanities Research Council of Canada and approved by the University of Ottawa Research Ethics Board.

You will have the opportunity to receive information on treatment options.
Please call 613-562-5800 ex. 2220 or email sexualhealth@uottawa.ca for more information.

McGill University (Montreal, Quebec, Canada)

The present study is interested in investigating the role fear and pain play in vaginismus and vulvar vestibulitis syndrome.

Marie-Andree Lahaie, PhD Candidate
514-398-5323 or dede@ego.psych.mcgill.ca

The Departments of Psychology at McGill University and of Obstetrics and Gynecology at the Jewish General Hospital are interested in seeking women aged 18 to 40 who are unable to experience vaginal penetration as well as women who suffer from pain during sexual intercourse. The study involves a 3-hour session including: 1) a structured interview and questionnaires; 2) physiological monitoring (heart rate, skin conductance, respiration, and muscle tension; 3) a gynecological examination; 4) sensory testing session. Some minor pain may be experienced during the procedures, but no other health risks are posed. Participants will receive $75 for compensation and information on different treatment options.

Université de Montréal (Montreal, Quebec, Canada)

The impact of relationship variables on vulvo-vaginal pain and psychosexual functioning in afflicted women and their partners.

Gaëlle Piché 514-343-6111 ext. 47688 or gaelle.piche@hotmail.fr or desrosiers.mylene@uqam.ca

Université de Montréal and the Centre Hospitalier de l’Université de Montréal – Notre-Dame and Saint-Luc Pavilions are looking for women suffering from provoked vulvodynia (vestibulodynia) who are 18 or older and co-habiting or married.  French and English speaking participants are welcome.  Women and their partners will fill out questionnaires at home (about 60 minutes) and will send them back by mail to the research team.  All the information collected will be dealt with confidentially and with anonymity.  A thirty-minute telephone consultation with a sex therapist specialized in the treatment of vestibulodynia, member of the research team, will be offered to participating couples as a form of compensation.  The couples will thus be able to acquire information about vulvo-vaginal pain.

This study is funded by the Canadian Institutes of Health Research (CIHR).

Genetic and vulvar tissue study.

Anna Ghizzani, MD
0577-596203
ghizzani@unisi.it                                  

Women with vulvar pain, aged 18-65 years, can participate.  Participation involves structured interviews and questionnaires, a gynaecological examination and genetic blood test.  Patients will be offered multi-modal therapeutic interventions based on the acquired data.