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Up to 16% of women experience vulvodynia at some point in their lives, regardless of age, ethnicity, or socioeconomic group. The pain of vulvodynia can upend relationships and turn daily life into a nightmare. Then there is the stigma that vulvodynia carries. Many women are embarrassed to discuss vulvar pain with their doctors, and the taboo on women’s health topics doesn’t help. A lack of open discussion means that thousands of women worldwide are suffering in silence with no hope of a cure.
But the idea that you have to suffer in silence is a lie. There are plenty of ways to treat vulvodynia, and with help, it’s 100% possible to take back control of your life and relationships. In this book was written for you by practicing physicians, pelvic physiotherapists, and scientists with years of experience to smash the stigma and empower you with the knowledge you need to rid yourself of vulvar pain.
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Viva la Vulva
––––––––
Dr. Christopher Jenner
Viva la Vulva
© 2021 Dr. Christopher Jenner, MB BS, FRCA, FFPMRCA. All rights reserved.
All rights reserved. With the exception of the quotation of several paragraphs for the purpose of reviews, no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, scanning or otherwise, without the sole permission of the author and publisher.
Viva la Vulva, London,
United Kingdom
Website: www.vulvarpainclinic.com
PR Enquiries: [email protected]
ISBN: 978-1-7399091-0-9 (EPUB)
A CIP catalog record for this book is available from the British Library.
Editors
Dr. Ingrid Bergson, PsychD. (Hons)
Consultant Clinical Psychologist
London Orthopedic Clinic and London Bridge Hospital
HCA
London, UK
Dr. Arun Bhaskar, MBBS, MSc, FRCA, FFPMRCA, FFICM, FIPP
Consultant in Pain Medicine
Imperial Healthcare NHS Trust
London, UK
Dr. Micheline Byrne, MB, BCh, MRCOG, BAO
Consultant in Genitourinary Medicine and Vulvologist
Honorary Senior Lecturer
Imperial Healthcare NHS Trust
London, UK
Professor Linda Cardoza, OBE, MD, FRCOG
Professor of Urogynaecology
Consultant Gynecologist
Department of Urogynecology
King’s College Hospital
London, UK
Ms. Jennifer Constable, MCSP, AACP, MPOGP
Consultant Pelvic Health Physiotherapist
Six Physio
London, UK
Dr. Mike Cummings, MB, ChB, Dip Med Ac
Medical Director
British Medical Acupuncture Society
Royal London Hospital for Integrated Medicine
London, UK
Dr. Jose De Andres, MD, PhD, FIPP, EDRA, EDPM
Past President European Society of Regional Anesthesia and Pain Therapy (ESRA)
Vice Chairman European Diploma of Pain Medicine (EDPM-ESRA)
Tenured Professor of Anesthesia. Valencia School of Medicine
Chairman Anesthesia Critical Care and Pain Management Department
General University Hospital
Avda Tres Cruces s/n.46014 Valencia. Spain.
Dr. Alex Digesu, MD, PhD
Consultant in Obstetrics & Gynecology
Urogynaecology Subspecialist
Imperial College Healthcare NHS Trust
London, UK
Dr. Robert J. Echenberg, MD, FACOG
Specialist in Pelvic, Genital and Sexual Pain
Lecturer, Author and Clinician
The Echenberg Institute
Pennsylvania, US
Maria Elliott, BSc (Hons), MCSP, HCPC
Pelvic Health Physiotherapist
CEO and Founder of Mummy MOT
Maria Elliott Physiotherapy Services
4 Upper Wimpole Street
London, UK
Dr. Gustavo Fabregat-Cid, MD, PhD, FIPP, EDPM
Consultant in Pain Medicine
University General Hospital, Valencia
Associate Professor
Catholic University, Valencia, Spain
Dr. Charles A. Gauci, OLM, KCHS, MD, FRCA, FIPP, FFPMRCA, RAMC (Retd)
Former Consultant in Pain Medicine, Whipps Cross University Hospital
London, UK
Former Hon. Consultant in Pain Medicine, Guy’s & St. Thomas’ Hospital
London, UK
Consultant in Pain Medicine
Mater Dei Hospital
Malta
Dr. Lorraine Sarah Harrington, MBChB, Bsc (Hons), MRCP, FRCA, FFPMRCA
Consultant in Pain Medicine
NHS Lothian
Edinburgh, UK
Miss Anne Henderson, MA, MBBChir, MRCOG
Consultant Gynecologist
Owner and Clinical Director
The Amara Clinic
2 Linden Close
Tunbridge Wells
Kent, UK
Dr. Christopher Arthur Jenner, MB BS, FRCA, FFPMRCA
Consultant in Pain Medicine
Honorary Clinical Lecturer
Imperial Healthcare NHS Trust
London, UK
Mr. Nathaniel S. Jones, Jr., BS, R.Ph., FAPC
Clinical Compounding Pharmacist
Professional Compounding Centers of America
Houston, Texas, US
Professor Vikram Khullar, BSc, MB BS, MRCOG, MD, AKC
Consultant in Obstetrics & Gynecology
Urogynaecology Subspecialist
Imperial College Healthcare NHS Trust
London, UK
Ms Marta Kinsella, BSc (Hons), HCPC, MCSP, PGOP
Pelvic Health and Rehabilitation Physiotherapist
Beyond Health
Parsons Green
London, UK
Dr. Susan Kellogg Spadt, PhD, CRNP, IF, FCST
Director of Female Sexual Medicine
Center for Pelvic Medicine
Bryn Mawr, Pennsylvania, US
Prof OBGYN at Drexel University College of Medicine
Philadelphia, Pennsylvania, US
Dr. Kim Lawson, BTech (Hons), PhD
Senior Lecturer in Pharmacology
Sheffield Hallam University
Sheffield, UK
Dr. Yi Liu, PharmD, PhD, R.Ph
Research Pharmacist
Research & Development Department
Professional Compounding Centers of America
Houston, Texas, US
Dr. Deirdre Lyons, MB BCh, BAO, MRCOG
Consultant in Gynecology
St. Mary’s Hospital
Imperial Healthcare NHS Trust
London, UK
Dr. Jawaad Saleem Malik, BSc (Hons), MB BS, Executive MBA, MFMLM, MAcadMEd, FRCA
Specialist Registrar in Pain Medicine
Advanced Pain Fellow
Imperial Healthcare NHS Trust
London, UK
Dr. Pamela Morrison Wiles, PT, MS, DPT, BCB-PMD, IMTC
Pelvic Pain Expert, Author, Speaker
Pamela Morrison Physical Therapy, PC
140 West End Ave., Suite 1K
New York, N.Y. 10023, US
Professor Filippo Murina, MD
Professor and Chief
Lower Genital Tract Disease Unit
Obstetrics and Gynecology Department
V. Buzzi Hospital
University of Milan
Milan, Italy
Dr. Sunny Nayee, MB BChir (Cantab), FRCA, FFPMRCA
Consultant in Pain Medicine
Imperial Healthcare NHS Trust
London, UK
Dr. John Newbury-Helps, DClinPsych, MA, MBA
Specialist Clinical Psychologist
Imperial Healthcare NHS Trust
London, UK
Mr. Angus McIndoe, PhD, FRCS, MRCOG
Consultant Gynecologist
The McIndoe Centre
9 Harley Street
London, UK
Miss Anusha Patel, MPharm (Hons)
Head Pharmacist
Pharmacierge
Wimpole Street
London, UK
Dr. Anna Pallecaros, MB BS, MRCP, BSc, DSTD, DTM&H, DFSRH
Consultant in Genitourinary Medicine & Sexual Health
The Harley Street Clinic Diagnostic Centre
HCA Healthcare
London, UK
Dr. Michael Platt, MA, MB BS, FRCA, FFPMRCA
Consultant in Pain Medicine
Honorary Clinical Lecturer
Imperial Healthcare NHS Trust
London, UK
Dr. Ivan Nin Ramos-Galvez, LMS, FRCA, FFPMRCA
Consultant in Pain Medicine
Royal Berkshire NHS Foundation Trust
Reading, UK
Dr. Attam Singh, MB BS, FRCA, FFPMRCA
Consultant in Pain Medicine
West Hertfordshire Hospitals NHS Trust,
Hertfordshire, UK
Dr. Amy Stenson, MD, MPH
Associate Professor
Residency Program Director
Oregon Health & Science University
Portland, Oregon, US
Department of Obstetrics and Gynecology
3181 SW Sam Jackson Drive
Portland, Oregon, US
Miss Petra Rosario, MPharm (Hons)
Pharmacist
Pharmacierge
Wimpole Street
London, UK
Ms. Riikka Uljas-Bärman, MA
Organization Coordinator
The Gynecological Patient Association Korento ry
Finland
Community Educator
Finland
Mr. Edward Ungar, MA (Cantab), MBA
CEO Pharmacierge
Pharmacierge
Wimpole Street
London, UK
Mr. Leon Ungar, MRPharmS
Co-Founder and Pharmacist Director
Pharmacierge
Wimpole Street
London, UK
Ms. Sarah Wolujewicz, BSc (Hons), Postgrad Cert, HCPC, MCSP, MPOGP
Clinical Lead, Pelvic Health Physiotherapy
Imperial College Healthcare NHS Trust
London, UK
Pelvic Health Physiotherapist
The Havelock Clinic
London, UK
Disclaimer
Although the author and publisher have made every effort to ensure that the information in this book is correct at the time of publication, the author and publisher do not assume and hereby disclaim any liability to any party for any loss, damage, or disruption caused by errors or omissions, whether such errors or omissions result from negligence, accident, or any other cause.
This book is not intended as a substitute for the medical advice of physicians. The reader should regularly consult a physician in matters relating to their health, particularly with respect to any symptoms that may require diagnosis or medical attention.
The information contained in the e-book, paperback, hardback, and audiobook (together referred to as ‘Material’), is for general information purposes, and nothing contained in it is, or is intended to be, construed as advice, unless the suggestion/s have been approved by the reader's personal physician or personal healthcare provider. This is because it does not consider the reader's individual health, medical, physical, or emotional situation or needs. It is not a substitute for medical attention, treatment, examination, advice, treatment of existing conditions or diagnosis, and is not intended to provide a clinical diagnosis, nor take the place of proper medical advice from a fully qualified medical practitioner.
Prior to acting on, or using any of the information herein, the reader/listener must consider its appropriateness regarding their own personal situation and requirements. Readers/listeners are responsible for consulting a suitable medical professional prior to trying out any treatment or taking any course of action that may directly or indirectly affect their physical or mental health or wellbeing, because of what they have read or heard in the Material.
To the maximum extent permitted by law, the author and publisher disclaim all responsibility and liability to any person, arising directly or indirectly from any person acting or not acting based on the information in the Material.
Introduction
Smashing the Stigma
Up to 16% of women experience vulvodynia at some point in their lives, regardless of age, ethnicity, or socioeconomic group. The pain of vulvodynia can upend relationships and turn daily life into a nightmare. Then there is the stigma that vulvodynia carries. Many women are embarrassed to discuss vulvar pain with their doctors, and the taboo on women’s health topics doesn’t help. A lack of open discussion means that thousands of women worldwide are suffering in silence with no hope of a cure.
But the idea that you have to suffer in silence is a lie. There are plenty of ways to treat vulvodynia, and with help, it’s 100% possible to take back control of your life and relationships. In this book, we’re going to smash the stigma and empower you with the knowledge you need to rid yourself of vulvar pain.
This book was written for you by practicing physicians, pelvic physiotherapists, and scientists with years of experience treating vulvodynia and vulvar pain in patients. Some of our patients suffered for years before getting help, and we know how hard it can be to break the stigma and ask for that help. That’s why we put our brains together and wrote this book.
It’s not a thesis or a physician’s manual. It’s an easy-to-read, step-by-step approach. We’ll discuss available treatments for vulvodynia, self-help options, and guidance for everyday management—all in layman’s terms with simple illustrations. At the end of each chapter, you’ll find references that you can look up for more detailed information.
Hopefully, this book will help you work with your physician, pelvic physiotherapist, or other pelvic healthcare professional to get treatment. Think of it as your go-to guide to crushing vulvar pain.
Of course, there’s no single magic bullet cure for vulvodynia, and we recognize that there are many potential treatments available. Not all patients respond to treatments in the same way. As with anything, there’s always a certain amount of trial and error involved. That’s why we recommend a whole-body approach with regular monitoring and check-ups, so you and your physician can gauge how well treatment is working for you.
As a Specialist Consultant in Pain Medicine at Imperial Healthcare NHS Trust, and as the Director of the London Pain Clinic in Harley Street, London, UK, I’ve been treating patients with vulvodynia for many years using this multidisciplinary approach.
Ultimately, the goal of treatment is to reduce vulvar pain and make healing possible. In helping my own patients with vulvodynia, I always start with simple steps. For example, I might prescribe oral and topical medication, physiotherapy, and pelvic floor exercises to be done at home. If these simple treatments don’t make a difference, I’ll talk to my patient about more involved options, like minimally invasive pain medicine procedures and surgical intervention.
The point is, every case is different, and there’s no one-size-fits-all solution when it comes to vulvodynia. That’s why I hope you’ll use the information in this book as a starting point to discuss treatment with your physician. And remember, the first step to getting effective treatment is getting the right diagnosis.
Luckily, there are many treatment options for vulvodynia, and we’ve collected the main ones in the table below. If you’re not familiar with some of these treatments, don’t worry: we’ll walk you through them all later.
Treatment Options for Vulvodynia
One final piece of advice before we get started. As you review the information in this book, please keep in mind the following facts about medical treatment for vulvodynia:
It’s not an exact science.
It can be complicated.
It may require some trial and error.
It may take a little while to work.
What ends up working will be different for everyone.
The best approach combines multiple options.
Now, let’s smash the stigma and work on helping you feel better one step at a time.
“An individualized, holistic, and often multidisciplinary approach is needed to effectively manage the patient’s pain and pain-related distress” [7].
Dr. Christopher A. Jenner, MB BS, FRCA, FFPMRCA
Consultant in Pain Medicine
Honorary Clinical Lecturer
Imperial Healthcare NHS Trust
London, UK
A Patient’s View
Ten years ago, I was in pain. I was 30, single, and watching all my married friends start to have babies. At that time, it seemed I was destined for a life of painful sex, or no sex at all. I was numb from a bad breakup, numb from doctors shrugging their shoulders at me, numb from just having to live with it. The pain was ruining my life—not just my sex life, but my whole life. Beyond the pain lay doubt, dashed future dreams, sadness, anger, resentment. An array of gynecologists were patronizing and unsympathetic. “Nothing’s wrong with your anatomy,” I was told, while anything that touched me down there cut and stung, burning like a ring of fire. One female doctor said to me, impatiently, “You need to relax for me. It doesn’t hurt.” Another stated, “Sex will get better, you just need practice. Have some wine.”
If you are reading this, you are likely in the same boat I was in when I picked up a book about Vulvodynia in hopes that it would help me figure out what was “wrong with me.” I recall trying to get through the pages of that book but being unable to. There was so much useful information, but I was emotionally distraught, and the medical terms were of little comfort. I want to reassure you of some things before you begin reading this book. There is a lot of information in these pages. Some of it will be helpful, some of it may not apply directly to your situation and so may seem overwhelming. Be steadfast and gentle with yourself as you digest the information and stories you will find here.
About 5 years ago, after sharing my story publicly, I started receiving notes from women all over the world. The notes came via Facebook, Instagram, and email. They came directly to me or were forwarded to me via the National Vulvodynia Association. If there had ever been a time when I felt I was alone, that feeling has long been dispersed as myth. One such note, from a 19-year-old woman, read, “I just want to feel that intimate, emotional connection with someone so desperately and I can’t...how did you survive it and are you still ok now??"
I did survive it, and you can too. You need exactly three things to survive vulvodynia: a voice, a vocabulary, and your own volition.
Voice
Without a way of telling our story we are cut off from being able to heal. Carrying a secret is exhausting and makes a wound that will not heal until the matter is given words and witness. Take courage and find a way to confide in friends or loved ones who will truly listen. Many women have dealt with the same thing you are dealing with, and you will hear their voices in the pages of this book. Join them.
Vocabulary
The proper vocabulary will greatly aid your journey to wellness. It will be much easier to seek treatment and diagnosis when you have some knowledge of the medical approaches that have helped other women. Use the vocabulary you will find in these pages to pinpoint your symptoms and bolster your knowledge so that you are well equipped to discuss your condition with your medical provider.
Volition
Gather your courage and use all the force of your own will to seek and find the caring doctors who will listen to you and guide you on your journey. There are many incredibly knowledgeable helpers and healers for women suffering from vulvodynia, and if your doctor isn’t one of them, take everything you have learned from the pages of this book and go find one who is.
A therapist said to me once, “Like driving at night, you have to keep moving to see what’s ahead.” Let this book, and the words of someone who has been in your shoes, give you some courage to keep going. To the friends, loved ones, and medical providers who are reading this book to educate themselves in support of a woman they know—thank you for being here. You are key to her healing process. Your love and support, and your willingness to hear her and to listen, are invaluable to the success of her journey.
Callista Jane Wilson
San Francisco, California, US
www.callistajanewilson.com
Callista is a former fashion stylist turned writer whose personal experiences with Vulvodynia led her to begin focusing on advocacy and awareness for women struggling with this devastating condition. She has been interviewed by the BBC Worldwide Radio, has had a play written and performed in London inspired by her story, and has published articles, written a book foreword, and produced a YouTube PSA sponsored by the National Vulvodynia Association. She gave birth to her first child, a son, in March 2019 and is currently working on her first book, a memoir. She lives in San Francisco, California, US.
A Doctor’s View
Vulvodynia can have life-changing and negative impacts on women suffering from it. Not only is it a chronic pain condition, but it can also adversely affect day-to-day living, work, family life, and sexuality. As pain management services for women are fragmented, this book comes at a time where there is a clear need to provide a multidisciplinary approach to the problem.
Shortfalls in healthcare training and clinical interest have hitherto contributed to a widely held misperception that the condition is beyond treatment. As a result, many women have not had their diagnosis explained or their treatments optimized adequately. However, more recent medical research into the condition has exposed such misperceptions. A detailed history and clinical assessment alongside an understanding of the patient’s individual needs can offer a variety of possible effective treatments. The delineation and exploration of such treatments is the central focus of this book.
A further challenge is to raise the awareness of both the healthcare workforce and the public to the intricacies of this condition. This should then enable more women to be seen by the correct health professionals. Early diagnosis, appropriate treatment, and self-management strategies will make a significant improvement to the lives of many.
This book is an essential contribution to our developing knowledge of this complex but widely prevalent and life-changing disease. Readers are provided with an excellent framework with which to help self-manage their condition. It will also serve as an essential resource for those health professionals working across all areas of women’s health.
Dr. David Nunns, MD, FRCOG
Chair of the British Society for the Study of Vulval Disease
Trustee of the Vulval Pain Society
Consultant Gynecological Oncologist
Nottingham University Hospitals NHS Trust, UK
Table of Contents
Editors
Disclaimer
Introduction
Chapter 1What is Vulvodynia?
Chapter 2Understanding the Basics
Chapter 3Getting a Diagnosis
Chapter 4Vulva Self-Help Tips
Chapter 5Five Things Anyone with a Vagina Needs to Know
Chapter 6Summary of Treatment Options
Chapter 7Oral Medication for Vulvodynia
Chapter 8Topical Medication for Vulvodynia
Chapter 9Medical Cannabis for Vulvodynia
Chapter 10Pelvic Floor Muscles and Physiotherapy for Vulvodynia
Chapter 11Biofeedback for Vulvodynia
Chapter 12Desensitization using Dilators and Vibrators for Vulvodynia
Chapter 13Pelvic Floor Training Chairs for Vulvodynia
Chapter 14Can a Nerve Block Relieve Vulvodynia?
Chapter 15How Botulinum Toxin (Botox®/Dysport®) Can Help Vulvodynia
Chapter 16Sacral Neuromodulation for Vulvodynia
Chapter 17Foods and Supplements for Vulvodynia
Chapter 18Acupuncture, Vaginal Acupressure, and Manual Trigger Point Therapy for Vulvodynia
Chapter 19TENS for Vulvodynia
Chapter 20Diaphragmatic Breathing and YogaPsychological Treatments for Vulvodynia
Chapter 22Surgical Intervention for Vulvodynia
Chapter 23Relationships and Living with Vulvodynia
Chapter 24Sexual Intimacy and Vulvodynia
Chapter 25Pregnancy and Giving Birth for Vulvodynia Patients
Chapter 26Evidence-Based Medicine
Chapter 27Ongoing Research Trials for Vulvodynia
Chapter 28Patient Stories
Chapter 29Organizations, Support Groups, and Online Health Communities (OHC) for Women with Vulvodynia and Vulvar Pain
Chapter 30Claiming Disability Benefits
Chapter 31Basic Terminology
Appendix A. Popular Oral Medications Which Can be Prescribed for Vulvodynia
Appendix B. References
Chapter 1
What is Vulvodynia?
“Vulvodynia is persistent, unexplained vulvar pain, which can affect women of all ages” [1].
Vulvar Pain
Most women will experience vulvar pain at some point in their lives. Based on how long it lasts, the pain is classified as either acute or chronic. Conditions that cause acute pain, which lasts less than three months, are usually easy to diagnose and manage. Chronic vulvar pain (CVP) is pain that lasts three months or more. There are many causes of chronic vulvar pain- some common, others rare. Diagnosing and managing CVP is more of a challenge. The commonest cause of CVP is a condition called vulvodynia, or VD.
What is Vulvodynia?
Over the last 40 years, there has been some confusion about what vulvodynia actually is. In the seventies, it was used to describe burning vulvar pain. Sometimes, people used it to refer to any type of vulvar pain. The International Society for the Study of Vulvovaginal Disease (ISSVD) has worked very hard in recent years to clear up this confusion. Thanks largely to their efforts, vulvodynia is now a precise diagnosis. The ISSVD’s current definition is:
“Chronic vulvar discomfort, most often described as burning pain, occurring in the absence of relevant visible findings or a specific, clinically identifiable, neurologic disorder.”
Vulvodynia is a diagnosis of exclusion. In other words, when other possible causes of vulvar pain have been ruled out, doctors diagnose the condition as vulvodynia. The exact cause of vulvodynia is not known, but it is regarded as one of the most severe types of nerve or neuropathic pain. For doctors and clinicians, the ISSVD recommends the following classification to help diagnose women suffering from vulvar pain. First, clinicians should consider possible causes like infection, inflammation, neoplasia, and neurological conditions, as follows:
Vulvar pain related to a specific disorder – NOT vulvodynia
Infection- thrush, bacterial vaginosis etc.
Inflammation- lichen sclerosus, eczema etc.
Neoplasia- Paget’s disease, carcinoma etc.
Neurological- pudendal nerve entrapment, spinal nerve compression etc.
If none of the above disorders are present, clinicians should consider vulvodynia, and classify it as follows. We’ll look at what each of these classifications mean in the next section.
Vulvodynia
Generalized- multiple areas of the vulva affected
Provoked- sexual, non-sexual, or both
unprovoked
mixed- both provoked and unprovoked
Localized- one area of the vulva affected
Provoked- sexual, non-sexual, or both
unprovoked
mixed- both provoked and unprovoked
Obviously, it’s vital for clinicians to correctly diagnose vulvodynia, and to be as specific as possible in their diagnosis. This will help women suffering from vulvodynia find relief more quickly and more completely.
Subtypes of Vulvodynia
Generalized Vulvodynia
Generalized vulvodynia (GV) refers to pain in multiple areas of the vulva. The pain may fluctuate, with flares and remissions, and you may even experience some pain-free periods. Sexual intercourse usually aggravates the pain, as does sitting for long periods of time and performing other activities that put pressure on the vulva [4]. If you are diagnosed with generalized provoked vulvodynia, that means there’s a clear trigger for the pain. But more often, generalized vulvodynia is unprovoked, meaning there’s no clear trigger; the pain simply occurs spontaneously. Even so, certain activities, like intercourse, can still aggravate it.
Localized Vulvodynia
Women suffering from localized vulvodynia experience pain in only one part of the vulva. The most common type of vulvodynia is provoked localized vestibulodynia (PVD, previously called vulvar vestibulitis). Women with this condition experience burning, stinging, rawness, and irritation in the vulvar vestibule. Pressure on the tissues of the vestibule triggers this pain, usually caused by one or a combination of the following: foreplay, a gynecological examination, prolonged sitting, tampon insertion, wearing tight clothes, and penetrative sexual intercourse [4,12]. Another type of localized vulvodynia is clitorodynia, or pain that occurs in the clitoris, the genital organ in front of the vagina.
PVD: Primary and Secondary Classification
Provoked vestibulodynia (PVD), may be diagnosed as primary or secondary. Primary means the pain began the first time a woman experienced vaginal penetration. Secondary means the pain began after a period of pain-free vaginal penetration [4].
Symptoms and Signs of Vulvodynia
The main symptom of vulvodynia is vulvar pain, but women suffering from vulvodynia experience different types of pain, including:
Pain over the inner vulva at the entrance to the vagina, especially during sex and when touched
Uncomfortable burning and/or tingling sensations in the vulva
Soreness, aching, and throbbing
Pain and discomfort triggered by pressure to the tissues, such as from tight clothes and attempted tampon insertion [1,3,4,5,6]
Other symptoms include:
Swelling
Pain, frequency, or urgency with urination
When examining a patient for vulvodynia, clinicians may not see anything wrong other than some redness. As the patient, this can be very frustrating. You know there’s something wrong because you’re in intense pain, but the clinician may tell you they can’t see anything. If this happens, you may want to ask your clinician to check for vulvodynia using other methods.
For example, since there are often no visual indicators of vulvodynia, clinicians may use the Pain Provocation Test, in which they use a light touch stimulus to test for pain. If pain occurs after a light touch that shouldn’t normally cause pain (this reaction is known as allodynia), the patient may have vulvodynia. In other cases, clinicians may test for pain using a painful stimulus to see if the patient experiences more pain than is normal (this reaction is known as hyperalgesia).
Tenderness, tightness, and weakness of the pelvic floor muscles can also be signs of vulvodynia. 80% of vulvodynia sufferers experience pelvic floor muscle dysfunction.
Who Does Vulvodynia Affect?
Vulvodynia affects adolescents and adult women of all ages, ethnic backgrounds, races, and religions [6]. It is often linked to co-morbidities (other conditions), including recurrent cystitis, bladder pain syndrome, fibromyalgia, headache, endometriosis, constipation, irritable bowel syndrome, and other chronic pain conditions [6].
What Percentage of Women Suffer?
According to the National Vulvodynia Association, “Research studies find that as many as 16% of women in the US suffer from vulvodynia at some point in their lives. The highest incidence of symptom onset is between the ages of 18 and 25. The lowest incidence is after age 35” [6].
The Impact of Vulvodynia
For women suffering from vulvodynia, sexual intercourse is either impossible or painful. This can lead to women being embarrassed or afraid to start relationships [5]. In the worst cases, vulvodynia can lead to relationship issues, divorce, general sex problems, and sleep disturbances [6,10].
Some women are forced to leave their jobs because they can’t sit at a desk. Others can’t wear trousers or shorts, and some can’t even wear underwear. Needless to say, these limitations often lead to feelings of hopelessness and depression, common among women with vulvodynia [6].
What Causes Vulvodynia?
While the exact cause of vulvodynia is not known, possible causes may include:
Genetic susceptibility leading to overreaction/sensitivity to inflammation/infection
Injury or irritation to the vulva nerves
Changes in hormone levels
Overreaction to injury/infection in the vulva cells
Excess nerve fibers within the vulva
Weakened pelvic floor muscles
Allergic reaction to specific chemicals [10]
According to Harvard Health, “One theory is that it involves injury to the pudendal nerve, which runs from the lower spine to the vulva and vagina” [7]. This nerve damage could stem from a number of causes, including herpes zoster virus (the virus responsible for chickenpox and shingles), injury to the tail bone, a ruptured disc, childbirth, or pelvic surgery. Since the pudendal nerve is the principal nerve involved in vulvodynia, clinicians may target it when administering treatment [7].
Women who suffer from pain associated with intercourse, i.e., dyspareunia or vaginismus, often go on to develop vulvodynia, particularly if they experience vulvar pain before their first sexual experience or during their early experiences [8]. For some women, vulvodynia may also be connected to changes in estrogen levels, a history of urinary tract infections, HPV, and vaginal yeast infections. In fact, several researchers believe that repeated vaginal infections lead to long-term vulvodynia [7,9].
Common Misconceptions
Myth: STIs cause vulvodynia
STIs (sexually transmitted infections) do not cause vulvodynia [10]. This is a very common misconception that only contributes to the stigma around women’s health. It’s important to realize that if you suffer from vulvar pain or vulvodynia, it is not your fault. Practicing safe sex and getting vaccinated against STDs, while certainly beneficial to your overall health, will not help prevent vulvodynia.
Myth: Vulvodynia increases your cancer risk
There’s a myth that having vulvodynia increases your risk of contracting cancer. This is simply not true. However, some types of cancer can cause pain in the vulvar region and may feel very similar to vulvodynia symptoms [8]. That’s simply another reason to get any vulvar pain checked out by a specialist.
Myth: Vulvodynia is “all in your mind”
In the past, many women were told that vulvar pain was simply psychological. Fortunately, more healthcare professionals today are realizing that vulvodynia is a valid condition many women suffer from. And there’s plenty of evidence now that vulvar pain can exist whether or not someone also suffers from anxiety, depression, or other mental and emotional health disorders. In other words, women who suffer from vulvodynia are not simply laboring under a psychological delusion.
At the same time, living with vulvodynia can be emotionally demanding, and it’s completely understandable to feel anxious or depressed as a result of your vulvodynia. In fact, it’s common. These feelings can even linger after the pain has been eliminated or greatly reduced [9]. In a later chapter, we’ll discuss options and practices for coping with the emotional health side of vulvodynia.
Myth: Vulvodynia is linked to sexual abuse
Research has not uncovered any link between vulvodynia and sexual abuse. While it’s true that vulvar pain may sometimes be triggered or aggravated by sexual intercourse, it is not caused by incidents of sexual abuse in the sufferer’s past. Again, this is a dangerous myth that only stigmatizes women’s health further. Of course, sexual abuse carries its own emotional scars. Visiting a licensed therapist can help victims of sexual abuse approach healing [9].
What is the Prognosis (Outlook) for Vulvodynia?
“With proper treatment, sufferers can lead normal, healthy lives that include good sex” [8].
Healing from vulvodynia may take several weeks or months, and treatment may not completely eliminate all symptoms. But through a combination of treatments and positive lifestyle changes, you can manage vulvodynia instead of letting it manage you [10]. The most important thing to keep in mind is that, “It doesn’t have to last forever” [9].
Taking the First Step to Find Out What’s Wrong
“An accurate diagnosis is half the battle, so now you can focus your efforts on finding helpful treatments and feeling better” [15]
Some women who experience vulvar pain discover that they are simply allergic to certain detergents, soaps, or other products. Or, they may have a vulvar skin condition or vaginal infection. If you think you may have an allergy, experiment with discontinuing the use of certain products to see if it helps. If you experience a vaginal infection which despite treatment, either disappears and then returns, or never goes away, you should make an appointment with your doctor [14].
Your doctor may want to screen you for sexually transmitted infections, depending on your risk factors and symptoms. They may also want to determine if you have vulvar itch or increased vaginal discharge, which could indicate a condition called vulvovaginal candidiasis. Since vulvar pain, which makes sexual intercourse painful and uncomfortable, can contribute to sexual dysfunction, your doctor may also consider sexual dysfunction as a related condition, though sexual dysfunction is not the cause of vulvodynia, but a possible result [16].
Because vulvodynia is such a misunderstood condition, you’ll want to get a full assessment, including a thorough examination and analysis of your complete medical and sexual history, performed by a doctor or clinician who specializes in vulvar pain. A specialist should be able to diagnose your pain and rule out or identify any underlying causes. Doctors who specialize in vulvodynia can include gynecologists, GUM physicians, dermatologists, pain physicians, and urologists.
Your doctor should be open about the fact that no single vulvodynia treatment is effective. In other words, they should explain to you that you’ll likely need to try a number of treatment methods, and may need to combine multiple treatments, to start managing your pain. They should adopt an individualized approach to your care, and guide you through the process of finding an effective solution. They may also point you to support groups, which as we’ll discuss later, can be extremely helpful [3].
Chapter 2
Understanding the Basics
Diagnosing vulvodynia can take time. Every case is different, and there is a wide variety of symptoms, ranging from mild to incapacitating [1].
While it’s hard to be patient when you’re experiencing pain or frustrating symptoms, the truth is it will simply take time for your doctor to rule out all the possible causes of your vulvar pain and identify your specific type of vulvodynia. After that, it will take time for you and your doctor to pin down the right treatment and therapy options for your condition.
There are many different treatment and therapy options available for vulvodynia, and what works for some women may not work for you. Keep this in mind as you seek treatment and try not to get discouraged when something doesn’t work. With the help of your doctor or clinician, you can simply move on to the next option, realizing that you’re one step closer to relief.
Once you find a successful approach, don’t despair if it takes longer than expected for relief to come. While you should definitely tell your doctor if you think a treatment is ineffective, progress can often be slow with vulvodynia. Instead of anxiously awaiting the day when you’ll be completely pain-free, focus on getting a little better every day. Keeping a positive outlook can be challenging, but it’s the best way forward.
The Basics of Vulvovaginal Anatomy
“Most women do not understand vulvovaginal anatomy and it certainly doesn’t help that parts below the belly button are usually referred to as “down there” [1].
As the National Vulvodynia Association states, “It is important to participate in treatment decisions and discuss your progress with your doctor or health care provider. You know more about how you feel than anyone else” [1]. Having a basic understanding of vulvovaginal anatomy can help you communicate with your doctor.
Getting up Close and Personal
Your mouth and lips are interconnected, but are often referred to as two different things. And in health care, we don’t treat the mouth and lips as one and the same. For example, “If you have chapped lips, you apply lip balm to the surface of your lips and not inside your mouth. The same applies to a vulvar disorder, i.e., you don’t insert medicine into the vagina to treat a condition of the external tissue” [1]. Just as we distinguish between the mouth and lips, we also distinguish between the vulva and vagina, which are composed of different tissues. If you receive a diagnosis of a vaginal disorder, such as a bacterial or yeast infection, you need to place medicine into your vagina [1].
The Perineum
The perineum, which is found between the pubic symphysis (a joint made of cartilage near the clitoris), and the coccyx (a small triangular bone at the bottom of the spine), is situated between the legs and below the pelvic diaphragm. In women, this is a diamond-shaped area which includes the vagina and anus. The perineum plays a crucial role in functions including sexual intercourse, micturition, defecation, and childbirth [1].
The Female Genitalia
The Vulva
The vulva refers to the external part of the female genitalia. Its functions include protecting the vestibule, urinary opening, and vagina. Directly above the vulva is the tissue covering the pubic bone, known as the mons pubis. The vulva’s outer and inner ‘lips’ are known as the labia majora and labia minora, respectively. Situated above the opening to the vagina is the clitoris [1].
The vagina opening, and the opening of the urethra, are surrounded by the vestibule. The vagina and the vulva contain different tissue. The vagina passageway starts at the opening of the vagina and ends at the cervix, inside the body at the lowest part of the uterus. The bladder is situated straight in front of the vagina, and the rectum is found behind it. The vagina’s length and width vary between women [1].
The Vagina
The vagina comprises tissue which can expand and contract. It has various functions, including stopping harmful bacteria from entering the body, facilitating sexual intercourse, and expanding during childbirth [1].
The Pudendal Nerve
The pudendal nerve starts at the sacral spine, which is found directly below the low back. It passes through the pelvis and then goes into the vulvar area, close to the ischial spine (which forms part of the pelvis). It then divides into the inferior rectal nerve, perineal nerve, and dorsal nerve of the clitoris. In both men and women, it is the pudendal nerve which is responsible for orgasm, correct functioning, and control of urination and defecation [1].
The Pelvic Floor Muscles
The pelvic floor comprises pelvic muscles, tendons, ligaments, and nerves. Strong pelvic floor muscles are essential for trunk mobility and stability, and function cooperatively to enable sexual, bowel, and bladder function. The pelvic floor muscles are separated into two types: the superficial muscles (collectively referred to as the urogenital triangle); and the deep muscles (the anal triangle). Other related muscles are the piriformis and the obturator internus [1].
Vulvar Texture and Skin Color
The outer lips, or labia majora, defend the inner regions of the vulva, and the color of the outer lips is akin to your overall skin tone. The outer lips house a large number of oil-secreting and sweat glands and pubic hair. Below the lips, a layer of fat protects and cushions the region during sexual intercourse.
The inner lips, or labia minora, are located between the outer lips, and their color varies from deep pink to reddish, brownish pink. They may be thick, bumpy bulges, or thin, small flaps [1].
The inner lips’ surface is moist and smooth, with glands situated along the edges. The glands look like tiny pimples, with a pebbly appearance. The tissue around the vaginal opening (the vestibule), is found at the base of the inner lips. This tissue is pink and moist, although on occasions, it can look almost red. The clitoris (which is cloaked by a retractable hood) sits above the urethra, where the inner lips converge [1].
Understanding Vulvovaginal Symptoms
Every woman’s vulva looks different, and vaginal odor and secretions also differ. As the National Vulvodynia Association explains, “Sometimes it is difficult to figure out which characteristics are normal, and which are not. If you notice any abnormalities, consult your health care provider promptly and resist the temptation to self-treat” [1]. This advice of not self-treating cannot be overstated. As soon as you notice any concerning symptoms, book an appointment with your doctor.
Be Aware of Changes
From time to time, you may experience color changes or bumps in the vulva region. These may indicate a problem, or they may be completely harmless. In any case, if you notice color changes or bumps, make an appointment to see your doctor [1].
Vaginal Discharge
You may sometimes notice vaginal discharge, or fluid from your vagina that ranges from watery to a texture like milk or glue. Experiencing some vaginal discharge is completely normal. It’s caused by a number of factors, such as specialized gland secretions (including Skene’s and Bartholin’s); mucus from the cervix; and cells cast off from the walls of the vagina. Vaginal discharge is mildly acidic, and helps protect the vagina from infection [1].
The amount of discharge fluctuates according to your hormonal status, increasing midway through the cycle at the time of ovulation and right afterwards. Throughout your menstrual cycle, the discharge color also changes, ranging from clear to slightly yellow or milky white [1].
If you’re on oral contraceptives, you may have a different experience. Because the pill keeps your hormones’ estrogen and progesterone levels steady, it also keeps your vaginal discharge from changing throughout the month.
In terms of your amount of discharge, what is normal for your body is different for everyone.
The National Vulvodynia Association advises, “It is important to remember that normal secretions do not itch, burn or irritate, nor do they smell like fish or ammonia. Abnormal discharge varies in its amount and appearance. Secretions may become more profuse, cause a strong odor, change in color (from clear to gray-white, yellow-white or yellow-green), and/or contain traces of blood, if inflammation is severe” [1]. If you notice any of these symptoms, contact your doctor.
Odor
“Each woman has a unique scent” [1].
The vulva contains many sweat-producing glands that give off odor and enable heat to escape. You don’t need to worry if your vulvovaginal area emits an odor. But if the odor is unusually strong, you may want to talk to your doctor.
A strong, abnormal odor may be a sign of vaginal inflammation or vaginitis. BV (bacterial vaginosis) is thought to be the main culprit. It raises the vagina’s usually acidic pH, thus generating a smell of dead fish (in severe cases), or in milder cases, ammonia. A fishy smell can also be brought on by Trichomoniasis (a sexually transmitted disease caused by a parasite). A less common reason for suffering an unpleasant odor is yeast infection. [1]. In any case, an unpleasant odor is no cause for alarm, and your doctor should be able to treat it.
Alternately, your vulvovaginal area may not have an odor at all. This simply means that your vaginal secretions are normal. Normal secretions may also have an odor that fluctuates throughout the course of the menstrual cycle or smells like sour milk [1].
Changes during Pregnancy and Childbirth
During pregnancy, your vaginal secretions may turn a violet-bluish color, increase, and/or have a thicker consistency. If you are pregnant and your discharge becomes watery, this could indicate that your cervix has weakened, generating leakage. If this happens, contact your doctor. Some women experience uncomfortable varicose veins within the vulvar region [1].
If your baby is delivered via the vagina, your vagina will temporarily expand. You may have a visible perineal scar (between the vaginal opening and the anus) if a tear or episiotomy occurs at the time of delivery, but this is nothing to worry about.
Estrogen levels are extremely low during the postpartum period. This is especially true for women who breastfeed their babies, and low estrogen can substantially reduce vaginal lubrication, or the naturally produced fluid that keeps your vagina smooth and free of friction. To help protect the vulva after giving birth, it’s a good idea to refrain from sexual intercourse for a minimum of four to six weeks [1].
Changes during Menopause
During the five to ten years prior to menopause (known as the perimenopausal period), you may experience an increase in bacterial or yeast infections, vaginal itchiness or dryness, and/or discomfort during intercourse. Because of the reduction in estrogen during the perimenopausal period, the skin of the vulva becomes drier and thinner, making intercourse uncomfortable. The opening of the vagina can seem smaller due to the inner lips shrinking or flattening. In addition, vaginal discharge can vanish or become minimal unless women take certain medications such as tamoxifen, are overweight, or on hormone replacement therapy [1].
If you experience any menopause-related discomfort, contact your doctor for advice. There’s a myth that pain and discomfort during menopause is just something women have to tolerate, but the truth is, there are plenty of treatments and therapies that can minimize uncomfortable menopause symptoms.
Vulva Self-Examination (VSE)
“All sexually active women, and women over 18 years old, should perform a vaginal self-examination” [1].
Many women perform breast self-examinations, but only a small percentage have heard about the importance of VSE (vulva self-examination). The National Vulvodynia Association advises that “you should perform VSE to detect abnormalities that may indicate infection or disease” [1] between routine gynecological examinations. “It is important to start performing VSE at an early age, so you can learn what is normal and then recognize any changes. You should not experience discomfort from your VSE, unless you have an infection, open sore or other vulvar condition” [1].
How Do I Perform a VSE?
Choose a room that has good lighting, preferably daylight. Wash your hands before and after. You can either stand with one foot on a bed or sturdy chair, or sit where you have room to maneuver. Hold a mirror in one hand so you can see into your vulva, keeping the other hand free to make the examination [1].
Look at and touch all the regions of your vulva. These include the skin around the opening of the vagina, the left and right folds of the outer and inner lips, the clitoris and its surrounding area, the mons pubis, the perineum, and the perianal region [1].
What Am I looking For?
The National Vulvodynia Association suggests things to look for during your VSE:
“Do you see a new mole, wart, lump or other growth?
Is there a change in skin color, e.g., white, reddened, or brown patches?
Are there any cuts or sores?
Is there a change in the way the vulvar skin feels?” [1].
Apply gentle pressure all around the skin to check for any lumps. Pay close attention to any areas of concern, such as those that are giving you discomfort, itching, stinging, or pain [1].
How Often Should I Conduct a VSE?
Conduct this self-examination once a month. If you have periods, it’s best to do a VSE midway through your cycle. If you notice anything you think maybe abnormal during your VSE, contact your doctor [1].
