For six years, I dealt with severe vulvar pain that felt like an iron was burning me. In social situations, I silently prayed that people wouldn’t tell me to sit down, because it intensified the pain. To understand what was causing it, I visited my gynecologist many times and had numerous vaginal cultures, which were always negative. Eventually I was diagnosed with vulvodynia by a gynecologist who nervously laughed and led with, “You aren’t going to like what I have to say.” She was right. From her behavior, I knew that she was not the right doctor for me. For the next five years, I visited gynecologists, nurse practitioners, midwives, naturopathic doctors, physical therapists, and acupuncturists for second opinions, hoping to find someone who could help me. I was depressed, anxious, and in pain. During this period, I encountered many people who helped me and many who made me feel worse emotionally. Now that I am no longer in pain, I want to share my story with the hope of helping others. I also want to give feedback to women’s healthcare providers. Often, it seemed like there was no “care” in healthcare. Today, I am grateful for the team of health care providers who cared about me and led me to a life with less pain. ● To the doctor I finally found: Thank you for referring me to Pelvic Floor Physical Therapy. Every other doctor wanted me to take medication. Pelvic floor therapy decreased my pain and improved my quality of life immensely! Thank you for sharing resources with me and being willing to accept my recommendations and resources. Your recommendation of Amy Stein’s Heal Pelvic Pain gave me a specific plan to follow, which really helped; I felt comforted having a plan. Every time I shared a name with you, whether it was an acupuncturist, physical therapist, or product that helped me, you genuinely thanked me and said you would share it with other patients. Your kindness, respect, and willingness to collaborate make you an invaluable member of my team. ● To my acupuncturist and naturopathic doctor: ● To my support group: ● To my pelvic floor physical therapist: Thank you for referring me to resources about my diagnosis. The first few times I heard doctors say “Generalized Vulvodynia” and “Vestibulodynia”, my paper gown got soaked with sweat and I was overwhelmed. Fully clothed in the comfort of my own home, I read Pelvic Pain Explained and the pelvicpainrehab.com blog. Now I understand what causes my symptoms, and I’m no longer terrified of what’s happening with my body. I learned that hormones, recurrent vaginal infections, tight/weak pelvic floor muscles, an irritated pudendal nerve, and stress play a part in my pain. Knowledge is power! I am grateful you helped me find a knowledgeable doctor and mental health therapist. Your referral for cognitive behavioral therapy and to a doctor who actually listens was so important. ● To my mental health therapist: Thank you for teaching me to be kind to myself. Instead of being my toughest critic, I’ve learned to talk to myself the way I’d talk to a friend. Now when I have pain, I allow myself to rest without feeling guilty about it. Thank you for teaching me to accept the pain and advocate for myself. I’ve learned to manage the pain and not let it take over my life. I’m assertive with health care providers, because I know what I need to feel better. Now I’m able to help other women who have vulvodynia. If you are reading this because you are in pain, please don’t give up hope. It may take some time, but you too can find a team of health care providers who will listen and help you learn how to gain control of the pain. Laura D. can be reached at
Having vulvodynia has taught me patience, courage and assertiveness, and helped to shape the person I am today. In 2000, I had just graduated from high school and was excited about going to college. I envisioned having a career, traveling, and getting married and starting a family. What I didn’t expect was the struggle that was to come—the struggle to cope and function with chronic vulvar pain. I started having burning pain that, like many women with vulvodynia, I assumed was a yeast infection. Sitting, wearing jeans and riding a bike caused severe pain. For three long years, I saw gynecologists, dermatologists and a urologist, all of whom said, “There is nothing wrong.” Finally, with NVA’s help and resources, I was diagnosed with vulvodynia. By 2006, I had exhausted my treatment options in Canada and had a vestibulectomy in the U.S. Although surgery didn’t completely eliminate my pain, I started to turn the corner. My experience with vulvodynia encouraged me to Iearn about the benefits of healthy living. Getting enough sleep and exercise, eating healthy foods and managing stress has helped me to such an extent that I no longer experience daily vulvar pain. Like many women with vulvodynia, I also have chronic pain in other areas of my body and struggle with depression and anxiety. When these feelings overwhelm me, I reach out for help. Through the NVA and my community, I have learned there are mental health resources for women with chronic pain. The relationships I formed through the NVA, many of which are long distance, have become some of the most encouraging and uplifting friendships of my life. Women who have pain in such an intimate area know how to be there for one another. The NVA has also given me the opportunity to be part of a community of strong women who lift each other up and give hope and support to recently diagnosed women. My husband has been my rock throughout my diagnosis and treatment. I kept putting things on hold, but he believes in making the best of the present. This ordeal taught us what really matters in a marriage and we don’t worry about the small stuff. My husband and I dreamed of having children. Although I was nervous that my vulvar pain might return during pregnancy, it did not. Because I had scar tissue from the vestibulectomy, we decided on a C-section instead of a vaginal birth. Now we are the parents of a smart and sensitive 5-year-old boy who makes us smile every day.
Five years ago I remember holding a pen to sign disability papers after being seen by several physicians who were unsure how to handle my case. I was stunned since I live in Philadelphia, which has many medical specialists. If you’ve ever watched the show, “House”, I felt like I was one of his mysterious cases. In my early twenties, I watched my life disappear in front of me. Barely making it through a work day, peeing every 20 minutes, being unable to sit for prolonged periods of time and the chronic burning that would not go away. Netflix, an ice pack and my couch were my coping strategies. One of the most difficult aspects of the experience was feeling isolated and most people I encountered didn’t know how to respond. I would often hear the comment “you look fine” and became very resentful of having an invisible illness, wishing people could understand the daily pain I endured. I continued to attend events, because I didn’t want to miss out, and pushed myself to manage the pain the best that I could. In hindsight, I would recommend setting boundaries, attending events you can tolerate and not feeling the need to justify yourself. Fortunately, during this part of my journey I walked into a PT clinic that guided me to an “A Team” of professionals that changed my life. Prior to this diagnosis, I was constantly stressed, had limited energy, and lived in the future. My journey with vulvodynia has changed my perspective on how I approach life. Now I take time for self-care and trust my intuition. There was a point where I hit rock bottom and did not know if I could muster the strength to move forward, but I put one foot in front of the other and leaned in. My pelvic pain provider and physical therapist were excellent, using various treatment methods, but I only felt 75 percent better and kept seeking a full recovery. The final treatment component that helped me to move forward was therapy, both individual and couples counseling. What I learned in therapy substantially contributed to how I managed chronic pain on a daily basis. Limiting stress, being more present, and consistently practicing strategies for coping with chronic pain have gotten me to the point where I run half marathons, am intimate with my husband, and enjoy life. If I was asked five years ago what my life would look like in the future, I would have responded, “A life of daily, debilitating pain”. I am amazed at the opportunities that have occurred, new relationships I have made along the way, the amount of strength I have, and the wonderful support I have experienced. The best advice I can give to someone who is recently diagnosed is, “don’t give up” and “trust what your body is telling you.”
If you see me smiling, it’s because I’ve made peace with my pain. I feel it, I recognize it and I let it go. The first time I heard the word vulvodynia was in an episode of Sex and the City. If you watched the show, you may remember when Charlotte mentions it at brunch, saying that “her vagina is depressed.” I honestly laughed with her friends, not knowing that years later, I was going to be diagnosed with vulvodynia. Unfortunately, the show handled it unrealistically, suggesting that it’s nothing to be worried about. I hated when Charlotte said it doesn’t hurt! After my symptoms started and I watched the episode again, I thought, “How dare you say you’re not in pain, because you have no idea.” I was living in New York, studying for an MFA at Parsons School of Design, when my symptoms started. It was the best time of my life. I was living in one of the most wonderful cities in the world and going to fashion school, meeting people from different cultures, eating amazing food and enjoying incredible art. I was very happy until, out of nowhere, my vulvar pain sent my happiness down the drain. At first I thought I had a normal yeast infection, which was confirmed by the school’s physician. That was the beginning of non-stop antibiotics and a long struggle to regain my life. I had to go back to Mexico, because the pain was constant and the medications didn’t work. People had recommended other gynecologists, but my health insurance had expired. Being a foreigner in the U.S., with no health insurance, was like being invisible. I was alone and feeling miserable, not knowing what was happening to my body and missing my family. Suddenly, I realized that my New York days were over. I arrived home and went directly to the hospital. At this point, my gynecologist knew something was wrong, but could not diagnose it. All my test results, e.g., bacterial and other infections, came back negative. I felt like I was going crazy, and that maybe it was all in my head. Next, I met with other gynecologists, urologists, and infectious disease specialists. I even went to see a famous ‘chaman’ in Mexico, known for his herbal teas that help infertile women get pregnant. I tried other alternative medicines, but I was completely overwhelmed. Still, no diagnosis. During this period, my boyfriend broke up with me and my work was suffering. So, like most people, I googled. After hours surfing the internet, I found the term Vulvodynia, and then I found nva.org. It was a life-saver for me, because I was not alone anymore. I packed my bags and went to Miami, where my dad was living at the time. I made an appointment with Jay Trabin, M.D., who has a private practice in West Palm Beach, Florida. He is very knowledgeable about vulvodynia and a super-nice person, so I immediately felt comfortable. Dr. Trabin examined me, and within minutes, I got my diagnosis of Generalized Vulvodynia and Pelvic Floor Dysfunction. I felt so relieved. I began a combination of treatments with a pain management specialist. My treatments included pudendal nerve blocks, Botox, antidepressants, topical creams, and most importantly, I started seeing a therapist. I know many of us are still struggling to find new ways to cope with vulvar pain, praying for new treatments or a cure. Even though I’m getting help, I still have bad days and find sex painful sometimes. I’ve managed to make peace with the pain, even though it hasn’t completely gone away. I’m not ashamed anymore and want to help other women in my country who are still suffering in silence. I have already started the first platform in Mexico dedicated to helping women with vulvodynia, @peacewithpain. With some help from NVA, I am optimistic we will finally break the silence.
I was a typical 24-year old living life in New York City when out of nowhere I started having burning and pain in my vulvar region. I was so scared and confused by what was happening to my body. I started going to countless doctors, some of whom were gynecologists. Many said it was all in my head, nothing was wrong, or that they just didn’t have a solution. I was given medication for yeast infections, steroid creams and antihistamines, but nothing provided relief. Finally, I went to a vulvar pain support group. Although it was disheartening to hear some of the women’s stories, it was ultimately a great decision, because I got the names of two vulvar pain specialists in New York City, who provided treatments that reduced my pain significantly. I went to one of the specialists and was diagnosed with vulvodynia and hypertonic (tight) pelvic floor muscles. My doctor explained that when the pelvic floor muscles get very tight, they can trigger a burning sensation. She prescribed an antidepressant and anticonvulsant for pain and gave me valium suppositories to help relax the pelvic floor muscles. I also started seeing a women’s health physical therapist specializing in pelvic pain. She gave me exercises to stretch my pelvic floor muscles and told me to order dilators to stretch the muscles and help them relax. I still had a moderate amount of burning pain, but I did not give up. My doctor injected some pelvic floor muscles with Botox to help relax them and that was a godsend! Botox essentially ‘paralyzed’ my tight muscles, which were then able to relax. My pain went from being a 5 (out of 10) to a 1. I could have sex without pain again and didn’t have the constant itching and burning. I finally felt normal! The best part about Botox is that it lasts three to six months. Additionally, I use the dilators to further stretch the muscles, which helps the Botox last even longer. I do realize, however, that Botox injections are not the answer for everyone, and in the end, it was not the medication or botox injections that completely reduced my vulvar pain. It was finding a skilled therapist who specializes in CBT (cognitive behavioral therapy). Through therapy, I learned to recognize negative thought patterns and utilize strategies to reduce stress in my life. I learned that when my body is stressed, I react by tensing my muscles (including the pelvic floor) and this in turn causes me to have pain. Finding ways to cope with my stress and anxiety is what ultimately rid me of pain. While I am currently pain free, I continue to maintain my skills so that it stays that way. For me, this includes going to therapy, taking anti-depressants, and doing stress management techniques. The key takeaway from my experience is that there are treatments for vulvodynia that are now more available, because many gynecologists, physical therapists, and other providers finally recognize that it is a common condition. I encourage everyone with vulvar or pelvic pain to do research and be persistent until they find a treatment that works. While therapy might not be the magic cure for everyone, I encourage anyone with vulvar or pelvic pain to explore all options and know that you will find relief. You can reach out to NVA to connect with a support contact in your area, who may have valuable information on local resources. Whether you are in a relationship, dating someone or single, do not be embarrassed that you have vulvodynia. It can help a lot to discuss your pain with other women and to be optimistic that you will find relief. Vulvodynia is more common than many people realize and you’ll be surprised to learn that women u know have had a similar experience.
I have suffered from vulvodynia since summer 2012. It all started with a prolonged yeast infection that would come back over and over again. All the creams and pills for my yeast infection didn’t help, and actually made it worse. My pain was severe at this point. I couldn’t walk for more than a minute without burning knife-like pain and was unable to do many activities. No doctor could help me. I stopped wearing underwear, because that helped a bit, but I still had lots of pain. During four years of suffering, I tried numerous things. Most importantly, I didn’t give up. I’m a fighter and felt that somehow I would get better. And here I am now, almost pain-free and happier than I’ve ever been. My experience was like a big rollercoaster and I’d like to share what helped me with the hope it will help you. It is very important to find a vulvar specialist who can diagnose you. At a University Hospital, I was finally diagnosed with generalized vulvodynia and my doctors were knowledgeable about treatment options. It really helped to know that I’m not the only one with this condition and that there are many treatment options. Along the way, I tried several medications. First, I was afraid of the pills, but then I discovered that 50 mg of amitriptyline helped me. It took more than three months to really feel a difference, but now I’ve been taking it for five months and can say that my pain level has dropped dramatically from 8/10 to 2/10 when I walk and 0/10 when I sit or lie down. The last four years have been very challenging and I cried often. There were times when I couldn’t imagine living with such pain, but now I’m happier than ever, because I know what a gift it is to be healthy. Complementary treatments also were useful. It took a long time, but I learned to be patient and listen to my body. Acupuncture, breathing exercises, coping strategies and, finally, osteopathy, were among the most helpful complementary treatments for relieving pain. While you’re in pain, it’s important to keep on living your life the best you can. You should talk about your condition with close friends, family and your partner, give yourself enough time to relax, think positively, and keep a pain diary. I really hope that you will feel better soon.
I’d like to share my experiences with both vulvodynia and chronic pelvic pain. In late 1999, I started having burning pain in my vulva. I figured it was just another yeast infection and bought Monistat, which didn’t help. The pain was severe. I knew it was more than just a yeast infection, so I decided to see a doctor. The gynecologist examined me and prescribed cream after cream, but none of them worked. Also during this period, I found out I was pregnant. I always wanted to have children and was elated. It was the main experience I looked forward to as an adult. Unfortunately, it was short-lived. I had what they call a blighted ovum, which means it is a false-positive pregnancy. After I was diagnosed, I always wondered if my symptoms had anything to do with the blighted ovum. I continued to do research, because I wasn’t getting any better, and came across the word vulvodynia. It sure sounded like what I had. Among other things, I read about the low oxalate diet and calcium citrate. I figured it couldn’t hurt, so I tried it. My first doctor wasn’t sure what to do, so I found another doctor on the internet. I had to wait a while to get in, but I was hopeful. I took all my research with me and mentioned that I had already started the diet/calcium citrate and would like to try amitriptyline. The doctor was impressed with my research and put me on amitriptyline (plus Diflucan for a short time). At first I didn’t notice a difference, but after several weeks, I did. I had also started soaking in Aveeno oatmeal to soothe the vulva, switched my laundry soap, stopped using fabric softener, and didn’t use swimming pools. I am still on the low-oxalate regimen, but have started introducing some moderate oxalate foods back into my diet. Eventually my doctor moved to another state and, once again, I had to find a health care provider who would be open-minded. Using the internet, I found Dr. Blake, who is excellent. He is so kind and really cares about his patients. Dr. Blake checked me out thoroughly and diagnosed conditions I didn’t know I had: vulvodynia, painful bladder, fibroids, and endometriosis. I mostly stayed on the diet, took amitriptyline and followed the self-help tips on the NVA website. Finally, I started feeling better. I still have symptoms of painful bladder, but I do manage. My vulvar pain went away many years ago, but I haven’t had sexual intercourse in a long time. I would probably have the vulvar pain if I tried being intimate with someone. The NVA is such a wonderful resource. They do support, educate, and have an amazing list of providers to try, including Dr. Blake! The women who run it are very nice and knowledgeable, and it gave me peace of mind to find women to talk with who were going through the same thing. That is why I decided to become a volunteer support leader. I’m hoping that I can make a difference in other women’s lives. I’ve been there and am still coping with pelvic pain. I felt so alone for the longest time and then the NVA and Dr. Blake changed my life.
“I remember lying on the bathroom floor thinking what’s wrong with me. I didn’t have a way to talk to anyone about it. And so I didn’t. It was my secret, private pain.” (Click here to see Callista tell her story.) Physical therapy isn’t uncommon, but most people have never heard of pelvic floor physical therapy. It involves having your insides massaged through your most intimate opening. The strangeness of such an activity is tempered by the strangeness of your predicament in the first place: your vagina hurts. It has always hurt. You’ve tried everything to overcome this unwanted sensation. Years of denial. Employing mind over matter techniques. A “fake it ‘til you make it” life motto. Lots of therapy. When none of that worked, you employed more insidious strategies – drinking, drugs, full body detachment. Along the way, you’ve infused this cocktail with plenty of self-loathing, guilt, overwhelming sadness, and, increasingly, a sense of total despair. As the downward spiral of chronic pain strengthens its grip on your psyche you watch life pass you by: another friend getting married, another baby on the way, another house warming party. The moment of Rock Bottom comes over the course of many years, and many failed relationships. And this is how you find yourself lying on an examination table, with a doctor’s hand all the way inside your vagina, massaging the walls of your pelvic floor. There is nothing remotely sexual about this experience. First of all, my physical therapist, Dr. Pamela Morrison, is incredibly professional. She is warm, compassionate and listens to me extensively before we begin the physical exam. Secondly, to be honest, nothing having to do with my vagina has ever felt very sexual. I do not have any pleasure sensations linked to this area of my body. Ask me to describe it in three words? Burning. Stabbing. Throbbing. The confusion this elicits is endless. I have a sex drive, I like men, and I want to be sexual. I hold on to the idea of what sex “could” be like, or “should” be like, or even, in times of true optimism, what it “will” be like. Over the course of my 33 years I have never relinquished this hope, this desire. Dr. Morrison is encouraging. “I think I can help you,” she says after our first meeting, “but you have to be prepared to do the work.” Over the course of six weeks we use biofeedback and massage to help my vaginal muscles learn how to behave normally, how to relax. I begin checking in with my pelvic floor often, and usually I find it is clenched protectively. I work on relaxing it and things improve ever so slightly. More than anything else, the growing sense of awareness and acceptance is changing my relationship to the pain – and to my vagina. The pervasive feeling of helplessness surrounding a taboo topic is falling away. I finally have a vocabulary with which to talk openly about my problem, and talking is very cathartic. I’m done hiding now. I walk around New York City telling anyone who will listen. At the six-week mark, Dr. Morrison says to me “you’ve come a long way, but you have more than a muscular problem.” She refers me to Dr. Andrew Goldstein, head of the Center for Vulvovaginal Disorders, and I schedule a consultation for a few weeks later. Home the next day for Christmas, I’m sitting in the dining room with my mother while the rest of my family chats and laughs in the living room. I weep as I share my story with her for the first time. She wraps her arms around me as I sob and consoles me gently, “Little One,” she says, “why didn’t you ever tell me? You can’t do everything alone.” The topic has been broached, and in that moment so many walls between my mother and me came tumbling down. It is the true beginning of letting go. A few weeks later, Dr. Goldstein is friendly and brisk as we review a lengthy questionnaire I had filled out prior to my office visit. I am tightly wound, equal parts hopeful and skeptical. Will he really be able to help me? Once we are in the examination room he does something no other doctor has done before – something so simple and ridiculously empowering, I am nearly giddy. He hands me a mirror and tells me that I am in control of everything that is about to happen. Looking at your vagina isn’t all that convenient, and I’d even go so far as to say it can be slightly terrifying, but I’d be remiss not to recommend that every woman should spend some time with a hand mirror and her most precious self. I had the stunning realization in that moment that this thing was mine and that I was solely in control. That this part of me was beautiful and worthy of love. And as Dr. Goldstein performed the exam I had another revelation – the pain was localized, confined to a relatively small area around the opening of the vagina, aptly named ‘the Vulvar Vestibule’. He explained to me that I had been born with over 300 times the normal nerve endings at the entrance to my vagina. Instead of sending a signal to the brain that I was being touched, the nerves were instead telling my brain that I was being burned and stabbed. This condition is known as Congenital Neuroproliferative Vestibulodynia, which is a type of Vulvodynia. And now for the moment of truth – what could be done about it? “Well, it’s really very simple,” he explained. “We remove the bad skin and replace it with healthy skin. After 6-8 weeks, you’ll be back to work. Within my practice the surgery has a very high success rate.” We go over the risks and the success rate among Dr. Goldstein’s patients, and also alternative options such as anti-depressants and hormone treatments. He explains that for me, these treatments may help as a “patch,” but could never correct the root issue. I am very emotional as we discuss treatment options. The surgery seems extreme, expensive, and almost logistically impossible. “Do you want children?” he asks bluntly, and more tears ensue. “Yes,” I manage to choke out. “Then you shouldn’t wait too much longer. Go home, take it easy today and think about it. Talk it over with friends and family. And don’t stay away too long.” I leave his office feeling conflicted. On the one hand, I am elated to have a diagnosis. On the other hand, I can hardly conceive of how to tackle the surgery. I schedule the procedure for the coming December, just under a year away. I spend the year working towards my goal. After the procedure, my mom drives me home and I spend the next eight weeks lying low. It’s one of the snowiest winters on record, and I feel like a caterpillar in my cocoon, waiting, changing, transforming – not just physically, but emotionally as well. I go through a very dark period, but as I begin to heal, a great hope surges through me and begins to burn steadily. I feel different. As the wound heals and the pain from surgery subsides, I can feel that the burning ring of fire is gone entirely. After two months, when I use a mirror to finally scope out my new little butterfly, I am amazed to see that although my vagina isn’t exactly the same, it is still beautiful. At my post-op follow up, Dr. Goldstein inserts two fingers into my new vagina I sit up incredulously – there’s no pain! Suddenly, tears of joy run down my cheeks and cover my face. It’s been 18 months since the surgery and I am thrilled to report that I am completely pain free. If I have learned one thing throughout this process – and thankfully, I have learned many things – it’s that speaking up about something that is bothering you is always a step in the right direction. My advice to anyone struggling with a similar issue is to never give up. Stay active and engaged in the process as you follow your path to wellness. There will not be a magic bullet, and the surgery is not for everyone. You may have to try many things but each thing will lead you one step closer to your solution. Remember that the body and mind are deeply connected. Nurture your mind, heart, and soul. Practice radical self-acceptance for where you are now, knowing that as you travel you will learn that there are many, many other people who share your pain. And you will meet many people who are willing to help you along the way. I have always loved this quote by Rainer Maria Rilke and often remind myself of it when I grow discouraged: “Let everything happen to you. Beauty and terror. Just keep going. No feeling is final.”
In April 2013, I went to my primary care doctor with vulvar burning that both of us thought was a yeast infection. She treated me, but the pain got worse. I took various medications, e.g., Neurontin, Lyrica, and Tramadol, but I had adverse reactions to all of them, as well as to the topical creams. Five months later, I made a desperate plea to my doctor, saying that I couldn’t stand the pain any longer, and she immediately sent me to a gynecologist. She, too, suspected an infection, did a thorough vaginal exam and scheduled a D & C. Then I was sent to a nurse practitioner who specialized in gynecologic and bladder conditions. She was wonderful and knowledgeable, checked for infections, and recommended Aquaphor ointment for the burning. She even suspected shingles, so I took Valtrex. My nurse practitioner also prescribed a painkiller, a combination of hydrocodone and acetaminophen, and I continued Tramadol as needed. Eventually she prescribed Estradiol, a compounded cream, which helped somewhat. I continued to use Aquaphor after urination to relieve the burning sensation. I also applied ice packs after getting up to urinate during the night, which helped me get back to sleep. By the summer of 2014, my doctors decided that I should go to the Mayo Clinic. I couldn’t get an appointment until late October. One day in August I had so much pain I called the clinic crying, and they moved up my appointment to September. I saw a gynecologist, physical therapist and urologist, all of whom were very helpful. The gynecologist diagnosed me with vulvodynia, explaining that it was a chronic condition that could be managed but not cured. He also said it may have been the result of a fall earlier in my life. He gave me lidocaine to numb the area and a brochure to the National Vulvodynia Association (NVA). I read that the NVA was founded by five vulvodynia patients, called for more information and have been a member for the past two years. I appreciate receiving the newsletters that have articles by different specialists and present the latest research findings. I participated in one study and was surprised that it didn’t have any questions for women who aren’t sexually active. For the past year, I’ve been doing pelvic floor therapy with a physical therapist in Louisville. I have found this treatment to be very helpful. I do the recommended exercises every day and use a TENS unit when the pain flares up. I also decided to try acupuncture. I go every other week, because I find that the treatment eases both pain and anxiety. Additionally, I go to a massage therapist twice a month and see a Reiki specialist who recommends vitamins, enzymes, and probiotics to aid digestion. I discovered that the Tramadol had caused severe constipation, so I stopped taking it. With the help of herbal teas and Colace, a stool softener, my bowel function is now fine. I am no longer on prescription medications for vulvodynia. I take herbal medication that my acupuncturist developed to relieve the burning after urination. I drink it three times a day and it has eliminated pain between urinations and during the night. I do continue to use Aquaphor after each urination to minimize immediate burning. I am very grateful that all these healers have come into my life.
I am 75 years old and have led a very active life, including exercising five times a week, golfing, volunteering, and gardening. Several years ago I was diagnosed with lichen planus, a disease that can cause pain while sitting, but it did not affect my quality of life. Then, in February 2015, after driving eight hours to visit my daughter, suddenly I started experiencing severe pain that limited my activities. Thinking it was related to lichen planus, I went to my dermatologist. I was diagnosed with vulvodynia. Since the diagnosis, I have had pain daily for seven months. I was treated with amitriptyline and gabapentin up to the highest tolerable doses. That gave me minor relief, but the side effects were as life-changing as the pain: extreme constipation, severe dry mouth, canker sores, and most significantly, loss of short-term memory and word retrieval in conversations. For four months I was unable to do any of the activities I previously enjoyed. Even sitting in church for an hour was extremely difficult. I found a specialist at a large university hospital who confirmed the vulvodynia diagnosis and treatment. She ordered a few additional creams that made no difference and then suggested a pudendal block. My goal was to reduce the pain level to a five and resume a lifestyle I could manage. Sadly, after four different types of blocks, I had no relief and still had intense pain many days. I have learned to cope by managing the amount of time I sit each day, using some home remedies, trying to enjoy my garden, and making choices between activities I can tolerate. Through months of independent research and the support of the NVA, I have found a vulvodynia clinic at another university hospital and we are starting over and working together to find the right balance of medications and dosages. I am slowly building my strength back up after being able to do very little for seven months. I’m beginning to sit and read, socialize and continue to garden. However, it is a very slow process. Some days the pain is a five and other days it goes up to a seven, even after light activity. I was fortunate to be diagnosed quickly, but finding the right team of specialists to manage my treatment and my expectations has been a challenge. The NVA has been very helpful, encouraging me through this journey. My hope is that I will continue to get stronger and return to most of my daily activities with manageable pain. Throughout this process, I have educated many physicians, friends and family members about vulvodynia. I also want to help educate the medical community so others with this condition can find experts and relief much sooner than I did. |
A nurse is teaching a client who has vulvodynia
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