Vulvodynia Cure Stories

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Vulvodynia Cure Stories

Improving Women's Health
through Education, Research, Support and Advocacy

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 talking to me with my clothes on! I was only wearing a paper gown when I first met with the five other medical doctors I saw before I found you. My brain couldn’t fully process what they were saying, because I felt awkward and cold.
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:
Thank you for trying so many different approaches. I am grateful you always listen and remind me I will be okay. Most doctors I met only had one treatment approach and didn’t focus on the cause of my pain. You had many ideas and didn’t give up.
● To my support group:
I am thankful the National Vulvodynia Association led me to you. I am so grateful for your support, product recommendations, and willingness to share your different treatment plans. I was both shocked and elated that I was not the only one who felt like this! Before I met you, having vulvodynia was the loneliest condition. Not talking about my symptoms and emotions only made the pain worse. Thank you for talking about your experiences.
● To my pelvic floor physical therapist:
Thank you for listening and for never dismissing my pain. I attribute a large part of my decreased pain to your therapy. You taught me that healing is not linear and gave me so many tools to help myself. My toolbox now includes a Therawand, foam rollers, therapy balls, yoga, stretches, and guided relaxation meditations. Knowing I have these tools makes me less afraid of the pain and empowers me.
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 encouraging me to explore the mind/body connection. I’ve learned that being anxious increases my pain and that I can control it by changing what I say to myself. The less anxious I am, the less pain I have.
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 lem682@gmail.com
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 l
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