National Vulvodynia Association

In my early twenties, I had my first urinary infection, after which I had at least one every year. The symptoms were burning and the need to urinate often, to the point it was waking me up at night. In 2018, I thought I had my usual urinary infection, but my culture came back negative. I went to several doctors, all of whom gave me medication for a urinary infection I didn’t have. Looking back, I don’t blame my doctors for not looking further into it, because I also thought they were recurrent UTIs. Eventually I saw a doctor who acknowledged how unusual it is to have symptoms of an infection with a normal urine culture. He asked me, ‘Have you noticed a change in your vaginal flux?’ That’s when I realized I had lost most, if not all, of my vaginal fluids! I am forever grateful to that doctor for sending me in the right direction. I saw an ob/gyn who was able to diagnose me, even though she didn’t have experience treating vulvodynia patients. It was reassuring just to hear there was a word for my condition.

When my pain was most severe, I was in school and Covid struck. My stress level was very high, which worsened the burning sensation and feelings of despair. I used ice packs and pain medication, but they didn’t control the pain. I felt isolated even though I had a good health care team and support from my partner and best friend. Knowing I had a condition that didn’t have a cure was difficult emotionally.

My gynecologist recommended that I see a physical therapist (PT) to assess and treat my pelvic floor muscles. A lovely PT taught me coping strategies, such as deep breathing and meditation, that helped to bring the pain down to a 3 out of 10. I even have some pain-free days now. Two years ago, I couldn’t even imagine having days without pain.

This entire experience taught me not to assume that pain will be permanent and that I can make it through the difficult days. I learned to accept that there will be not-so-good as well as good days. My advice to other women with vulvodynia is to keep searching until you find the care you need. Equally important, all of us need to understand that having vulvodynia does not define us.

I didn’t smile anymore and cried every day. I didn’t know about vulvodynia and never imagined that pain could lead to such an intense state of despair. Having said that, I want you to know I found my way back to a ‘normal’ life. This journey has given me strength I never knew I had. First I want to say we are not victims. You can actually do things to help your body heal. I hope that your road to well-being will be faster than mine.

Are you overwhelmed by negative thoughts because of the pain? You can choose not to have those negative thoughts. I have learned NOT to think constantly about the pain. You can learn to replace negative thoughts with positive ones. Please take from what I’ve learned below and adapt it to your needs. Your goal is to figure out what makes you feel better. I’m hopeful that some of the following advice will be helpful to you.

1. Positive thinking helped me get better because it pushed away fears that are triggered by pain. Catastrophic thinking can actually make pain worse so there’s a real benefit in overcoming it. From my experience, negative thinking utilizes a lot of energy that can be used to make you feel better. How do you learn to stop negative thoughts from recurring? You start by becoming aware of them and observing the consequences, e.g., notice how your anxiety increases. Next is the most challenging part. You have to create positive thoughts to replace them, e.g., “I choose to feel better today” or “I’m getting help and feel calmer today.” Even if you feel pain at the moment, saying this to yourself multiple times can help lessen the pain and anxiety. Most of us don’t understand the powerful effect that our thoughts have on our bodies. Focus your thoughts on the present, rather than the future. To learn more, look up mindfulness and cognitive behavior therapy. These techniques helped me a lot.
2. Commitment to Self-care. I put a mat and blanket near a wall with motivational phrases that have deep meaning for me. In this space I do pelvic floor muscle relaxation exercises, many of which are familiar to you. My PT taught me deep breathing to relax the pelvic floor. You inhale to a count of four and exhale to a count of eight. If you’re doing it correctly, your abdomen will rise as you inhale. Deep breathing relaxes pelvic floor muscles and I do it daily for maximum benefit. Also remember to relax your shoulders by bringing them down. After completing the exercises, I do 20 minutes of total relaxation using a yoga technique known as Shavasana, a meditative state that is done while lying down. The goal is to clear your mind of all thoughts and release the tension in your body. Shavasana helps me relax body parts that I can’t relax voluntarily.

Taking care of myself also meant starting to do things that I had stopped doing because I feared they would make my pain worse. I stopped playing guitar and singing, and going out to dinner with friends. My PT made me understand that I needed to do some activities I enjoy. I found a special cushion that helps women with vulvodynia to sit comfortably so I can enjoy going out again.

3. Manage your emotions. When my symptoms began, I felt angry and frustrated most of the time. Since negative emotions manifest in your body, being angry was making me feel worse physically. After I let go of those emotions and accepted that I had vulvodynia, I was able to focus on relieving the sources of tension in my body. As I became calmer, I observed that my pain decreased. It’s important to realize that making changes in your thinking and emotions takes patience and practice. You have to commit to making changes and give yourself time to unlearn old habits.
4. Your support network is critical. I am so grateful to my gynecologist and physical therapist for diagnosing my condition and teaching me the steps to take to feel better. My family has emotionally supported me on the most difficult days and continue to encourage me to move forward.

My suffering is over, so now I can smile and enjoy life again. If you’re near the beginning of this journey, I hope your suffering ends soon. Try some of the techniques I’ve described and you’ll discover which ones work for you. Be sure to find health care providers you trust. It’s especially helpful if you and your providers work as a team, because your input is essential to your recovery.

When I was diagnosed with vulvodynia and hypertonic pelvic floor dysfunction, I was a cisgender woman. It rocked my entire world thinking how it could be harder to find a partner, have sex, work, travel, and wear tight clothing because of this new diagnosis. It was scary and I didn’t want to face that truth. I cried in front of the doctor who diagnosed me, and she noted that in my patient records as if she were surprised someone would have that reaction to getting a painful diagnosis with no surefire cure.

Now, five years later, I’ve undergone many transformation journeys beyond those two first diagnoses. Part of that journey is coming to accept PVD and vulvodynia are natural parts of my life at this time. My pelvic pain is largely attributed to a condition called Ehlers-Danlos syndrome, which affects all of the collagen in my body. I’ve also found out I’m autistic and have ADHD. But one of the most significant discoveries has been recognizing I am not a cisgender woman, but a transgender, nonbinary ethereal being.

Going on testosterone, getting top surgery (having my breasts removed), changing my legal name, and changing up my hairstyle and clothing has brought a lot of joy and radiance to my world. Taking steps and seeing how it brings me closer to who I am and want to be is an honor to see and make happen. However, this has complicated my health journey, a journey that has already been too complicated for my liking.

On top of having multiple systemic conditions and chronic pain, I now think about whether health care providers will correctly gender me. I don’t use she/her pronouns anymore, sticking largely to they/them and he/him pronouns. I wonder when I enter say, a women’s health clinic for a gynecological-related appointment if they will assume I’m a woman just from walking in. Will they notice my deeper voice? My hairstyle? My pronoun pin? Usually (since I’m only a year into my physical transition) they do not. I’m hopeful that in a few years’ time on testosterone, that will change. Regardless, it frustrates me knowing that people like me will continue to struggle with having vulvodynia AND being misgendered, disrespected and isolated from spaces meant to be supportive. Spaces for vulvodynia havers, not just cisgender women.

As I continued in my transition, I had to leave more social media support groups that continued to use language that only included females, even after nonbinary and trans people respectfully took their time to explain why language change would make so many people’s days. People even offered ideas for more inclusive language. The people who fought against inclusion made me realize I didn’t need that kind of support, a support that didn’t see and respect me for who I am.

Having a vulva does give me a bit of dysphoria from time to time (feeling an incongruence between my internal self and my external body) but it is made far worse when people assume who I am just because I have one. Over the years I have learned how to manage my vulvodynia and avoid triggers when possible. I’ve found beauty in low-crotch pants, working with a physical therapist, managing wider systemic pain and food sensitivities, and incorporating medications as well as more traditional treatments like herbs into my care routine.

Some of my identities help make living with vulvodynia much easier, surprisingly. A beautiful thing about being polyamorous and queer is that, more often than not, queer partners are happy to have sex without penetration, be extremely consent forward when engaging in penetrative sex (i.e., happy to stop if it hurts and you say so), and more than happy to be close without being sexual at all! It’s such a relief to know that the right partner(s) will value me for who I am, not what kind of sex acts I can or can’t perform.

It’s been a bumpy ride from being a cisgender, straight, monogamous, able-bodied, neurotypical woman to becoming a transmasculine, genderqueer, gay, neurodivergent, disabled medical librarian. At times the pain is completely unbearable, I understand. And yet because of it, I’ve found all of the disability gains in this beautiful, painful life of mine. I live and stand up for my name, my pronouns, my pain management needs, and the needs of my community in hopes that we will one day live in a better world.

My story ends with a happy marriage, the birth of a beautiful baby, and no more vulvar pain! I believe that you can find a happy ending too.

My dream was to find love and be a mother, but for many years that dream was unreachable. As a teenager, I couldn’t even insert a tampon. I didn’t understand how other girls could do it and that made me self-conscious. Finally, when I was 19 years old, I told an ob-gyn about my problem. She discovered I had a vaginal septum, a thin wall of skin vertically separating the inside of my vagina down the middle. I needed surgery to remove the septum.

The surgery was successful and I was instructed to use a huge dilator for 5 to 10 minutes every day to ensure that the sutured walls of the vagina healed properly. It was extremely painful. I had never been able to use a tampon, let alone a huge dilator. And, although there was no more septum, the inside of my vagina was very sore from surgery.

A couple of years later, I fell in love. I didn’t consummate the relationship when we were dating. I told him it was a moral choice to wait until I found my life-partner. After he “put a ring on it” I tried to consummate the relationship, but it was so painful! I often had to ask him to stop because I would feel severe burning, or a sharp, stabbing pain.

The first ob-gyn I saw about this condition told me to use more lubricant and said I shouldn’t feel pressured to have sex if I wasn’t in the mood. I knew my desire for my husband was not the problem. The second ob-gyn was more understanding and prescribed a numbing cream. That didn’t help at all. The third ob-gyn referred me to a pelvic floor physical therapist and pelvic pain doctor. I spent hours researching solutions to this condition and was overwhelmed by all the terms, i.e., vulvodynia, vestibulodynia, vaginismus. I was scared that the treatment options included anti-convulsants, anti-depressants, Botox, vestibulectomy, etc.

I went to a physical therapist, and she spent an hour using what I call “magic fingers” to hit pressure points on my pelvic muscles and make the pain in that area go away. It was amazing! However, it was only a temporary fix. She told me to use dilators – starting with the smallest size – until I no longer felt pain inserting it, and then to move to the next size. The dilators did help, but I still had burning at the vaginal opening.

The dilators made intercourse tolerable and if I could make it past the initial burn, it was okay. We decided to conceive a baby. After the second month of trying, I got pregnant! As the due date approached, I feared that childbirth would be more painful for me than for the average woman. With an epidural, that worry went right out the window. I was able to have a vaginal birth and delivered my baby with no tearing (lucky me!). After waiting eight weeks post-birth, I nervously tried to have intercourse with my husband again and the pain had practically vanished! Now it’s four months later and I finally find intimacy enjoyable!

I highly recommend pelvic floor physical therapy to women with this condition. Please don’t accept that you have to suffer through sex. Every woman deserves a patient partner and a gradual physical therapy program that, little by little, helps you reach your goal. This is a real problem and there are real solutions out there. Don’t give up!

Three years ago, I was just finishing my second year of university. It was a very exciting time for me. I was entering the fourth year of a relationship and looking forward to my future. However, nothing could have prepared me for what happened next.

I began to suffer with excruciating pain in the most private part of my body and after two years of endless appointments and treatments that failed, I was diagnosed with vulvodynia. I believe that when discussing vulvodynia, we should be raw, real, and honest. Vulvodynia slowly took over my life. I lost my passion for studying, I lost my day-to-day happiness and positive outlook on life, I lost the relationship with my partner, and most importantly, I felt like I was losing myself.

When you’re diagnosed with vulvodynia, they may explain the physical pain you will suffer, i.e., the burning, stinging, throbbing, and aching, but they often forget to mention the emotional pain you’ll go through. A condition like this can make you feel incredibly alone; I know I did. That was until I found the NVA website and realized just how many incredible women were out there. I began to feel less alone and confident enough to speak out. I surrounded myself with support and used my voice to get the help I needed.

There were days when I couldn’t imagine a pain-free life and days when I couldn’t even get out of bed. However, with the right help, emotionally and physically, I was able to fight this condition every single day. I found tips to relieve some of the pain so that I could get back to doing the things that brought me joy. I found a way to communicate with my partner and we were able to continue a healthy, happy, and intimate relationship. Most importantly, I found a knowledgeable doctor and the right treatment plan, which I can happily say, has completely changed my life.

I am no longer in constant pain, I can wear pants, I can do the activities I want to do, and I am myself again. Of course, as with any chronic pain condition, I have occasional flare-ups, but they are manageable and remind me to be grateful for the pain-free days.

After struggling with this debilitating condition for three years, I became more passionate about advocating for women’s health and taboo topics. I started my own blog, where I share my story, tips, advice, and both the good and bad days. I created a blog where you can go for a giggle, cry, a moment of relief or just a place to keep learning about conditions like these. Take a look at https://thedreadedvword.wixsite.com/website if you think it would benefit you.

If I could give my 19-year-old self advice, it would be to seek help straight-away. Yes, it may be embarrassing to admit, but being in intense pain for years is absolutely worth an uncomfortable 10-minute chat. For those who are still suffering badly, keep going. There is an end in sight, but you need perseverance to reach it. Be your own advocate. And for the women, like me, who have come through the worst of it and can breathe a sigh of relief, embrace your new lease on life, do everything you hoped to do and never forget how strong you are. Nobody deserves to live in pain.

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 slplaurad@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.