National Vulvodynia Association

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.
One night when the pain was severe, I went to the emergency room with my best friend in tow. At this point, I thought it might be a sexually transmitted disease (STD). The ER physician ran all the STD tests, plus a test for human immunodeficiency virus (HIV). All of the tests were negative. When he examined me, I heard him say, “You have a yeast infection from hell!!” He sent me home with a Diflucan prescription and an incomplete diagnosis.

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.

At 14 years of age, I first noticed vulvar pain when trying to insert a tampon. I assumed it was typical discomfort, but two years later my boyfriend and I decided to have sex and the pain was so excruciating we had to stop. I sat in a tub of lukewarm water, trying to figure it out. We tried at another time, but it was impossible. I decided to stop trying to have sex. For awhile I felt like my life was normal, but then I started to have pain sitting. I finally told my mom who took me to a gynecologist. I described my symptoms. The gynecologist took some cultures and determined I had a yeast infection. I felt better after seven days of Monistat, but three weeks later the pain returned in full force. This time the gynecologist prescribed a strong antibiotic instead. It didn’t work and my doctor said she couldn’t help me. I was terrified.

For the next year, I continued to have yeast infections and used Monistat for temporary relief. Then it was my senior year and it seemed like almost everyone was having sex. My boyfriend and I tried again, without success. I went to college and started googling “vaginal pain.” Dozens of articles popped up, but I focused on one that described sexual dysfunction caused by vulvodynia.

That’s what I had… vulvodynia! I brought the information to my mom and we discovered the National Vulvodynia Association. I asked for their doctor referral list and found a specialist, but it took months to get an appointment. Instead, I found another vulvodynia specialist, Dr. Gloria Bachmann of Robert Wood Johnson Hospital, in New Jersey. During my Q-tip test, we determined that my pain was in the vestibule. Treatment began with topical creams because I was hesitant to take oral medication. I tried lidocaine 5%, then compounded gabapentin and clobetasol propionate. One or two provided short-term relief. At that point, I agreed to try oral medications, first an antibiotic, then an antidepressant, oral gabapentin, and amitriptyline. The first three weren’t helpful, but I felt pain relief with amitriptyline. I could not remain on amitriptyline, however, because it made me feel like a zombie.

Having tried so many treatments that were not helpful, or caused unacceptable side effects, surgery seemed to be my final option. After reading Dr. Andrew Goldstein’s book, When Sex Hurts, I decided to consult him about the prospect of surgery. After a long telephone conversation, and then a physical examination, Dr. Goldstein told me that a vestibulectomy was my best option. I was scared and wide awake the night before my appointment. The next morning I went to a small surgical center and was hooked up to an I.V. Minutes later I was asleep, and when I woke up, the surgery was over. To be specific, I had a vestibulectomy plus a hymenectomy. After two months of mostly bed rest, the tissue healed. At the post-op examination, Dr. Goldstein did another Q-tip test, starting at the outside of the vestibule. No pain! Then the Q-tip was inserted where the pain had been intense. Nothing…it was incredible! Afterwards, he gave me glass dilators ranging in size from small to large. I was instructed to insert a dilator every day to stretch the vaginal muscles and scar tissue. It was painful at first, but I used them consistently, and after a few weeks, my vagina felt normal again. I was finally able to consummate my relationship with my boyfriend!

Fast forward to today, I have a pain-free normal life and I am able to have sex whenever I choose. The disadvantage of the surgery, losing 25 percent of my vaginal lubrication, was well worth the sacrifice. I simply apply a considerable amount of lubricant before sex. Now I speak about my experience freely to give encouragement to other adolescent girls who are suffering from this condition and don’t know where to turn. I want them to know they are not alone and that they should be hopeful.

I’m stronger today than I was 12 years ago and I have Vulvodynia to thank. My life was forever changed in October 2002 when a car swerved in front of my boyfriend’s (he is now my husband) truck. There was nothing particularly remarkable about this accident, considered no more than a fender bender, but the effect it would have on my life was long lasting. I suffered severe whiplash, chronic back and neck pain, and TMJ. I cannot say for sure whether or not this played a role in my eventual diagnosis of Vulvodynia. My health care providers thought it was likely. My journey with Vulvodynia began following that accident and I was eventually diagnosed in 2004, just months before my wedding. It was devastating, and I almost cancelled my wedding. But my husband to-be told me that he would rather marry me and wait to consummate our marriage than put off the wedding. We married on July 17, 2004, a beautiful and memorable day.

For a long time I felt like Vulvodynia had robbed me of who I was. I felt like a completely different person. I couldn’t be the wife I wanted to be. I gave up activities that I loved. I tried to maintain a social life because that’s who I am. But it was much more challenging. I couldn’t wear jeans or ride a bike. Everything had changed. I wondered if I would ever be the same again. Shortly after my diagnosis, I found the NVA through an online search. I will never forget how I felt the first time I connected with my local support leader and realized I wasn’t alone. She remains one of my dearest friends to this day. I’m so grateful to the NVA and all they have done and continue to do. They have been, and still are, an important component of my healing journey.

I have learned a great deal on this road toward healing. There were times when I felt so weak and compared myself to others. I wanted to do everything my friends could do. One particular day, I expressed to my mom (my constant confidante and supporter) how much more capable my friend was because of all the things she could do in a day…in life! I told her she was stronger than me. My mom rose up to defend me and what she said that day will stay with me forever. She listed all of the medical and home remedies I use on a regular basis just to maintain my health. She told me that most people did not realize the energy it took just to be healthy. Then she told me I was not only stronger than I thought, but stronger than most people! I was so full of gratitude. Now, when I compare myself to others, I remember what she said. If getting out of bed in the morning is an achievement, pat yourself on the back. If going to work every day or taking care of your children is a challenge, you should be proud of what you have managed to do. You don’t need to measure yourself against others to validate your accomplishments.

After more than 10 years of facing this challenge, I now understand that Vulvodynia has made me a better person. I’m so glad I persevered. It’s a lesson I did not choose to learn. If I could turn back time and prevent it, I still would. I think we all would! But I can honestly say I have been truly blessed on this road toward finding healing. My advice to other women is, “Don’t give up!”

I’m happy to say that I gradually found a combination of treatments that healed my body. I did suffer years of depression and hopelessness, and I understand the loneliness that comes with this kind of pain. But I persevered with a great deal of support from my husband, my parents, my brother, wonderful friends, and my faith in God. I am by no means cured, but I am thankful for the healing I have experienced. I am also thankful for my experience with Vulvodynia and the amazing women I have met because of it. I still wish to be completely free of pain and have hope that will happen in the future!

Sherrie is a young wife and mother of three children living in Oregon. In 2005, she was diagnosed with lichen sclerosus, a vulvar dermatological disorder that causes vulvar skin alterations and pain. Her daughter was also diagnosed with lichen sclerosus two years ago. Sherrie’s experiences have inspired her to speak out about the condition and her struggles through her blog, and to provide support and encouragement to other women and girls suffering from vulvar dermatologic conditions and pain.

My father Rex is an amazing man. I cannot remember a time in my life that I was not aware that my dad was sick. However, he is a great example of a person that accepts his fate and pushes forward. My father was diagnosed with Parkinson’s in his thirties and over the years I’ve watched his health decline. He’s had three brain surgeries and numerous struggles with his disorder. Yet he has always been an example of a person who would do anything for a friend, loved one or complete stranger. He would literally give you the shirt off his back.

He’s always been a hard-worker, can be stubborn most of the time and is quiet, but he has a great sense of humor and has always believed in and supported me. He’s never given in to his disease. He’s always fighting and trying to do things that most people take for granted because he wants to be independent. I will never know completely the heartache he has gone through, but I am aware of all the things he’s had to give up, such as driving, a good night’s sleep, working, fishing, hobbies and even the ability to get around without falling. Although my dad has never broken down in front of me, I’m sure he’s had moments of despair and fear. Like my dad, I don’t bemoan my disease either.

In my darkest hours, I sit and think about how I’ve suffered and will continue to suffer, how at best I’ll have remissions followed by flare-ups, but will never be completely cured. However, I’ve been raised by a dad that taught me how to gracefully go through life with a disease. I come from a family of survivors who endure and continue to have hope. I am my father’s daughter.

Wallowing in despair drains from me all that is vibrant and joyful in my life. It kills my ambition, pollutes my soul and breaks my heart. Hope inspires me to trust that I am strong enough to handle my disease and not let it dictate my life. Instead of having hope for a cure, I have hope that no matter how unbearable my current pain may be, there will always be beautiful things all around me – my children, family, friends and nature – that I treasure while coping with pain.

For me, hope and charity go hand-in-hand. I love doing things for other people because it not only distracts me from thinking only of myself and my chronic pain, but it urges me to care for other people without expectation of reward. I’ve been devoted to charity and good works since I was a child. It is weaved into the fabric of my being.

If you are suffering with lichen sclerosus, vulvodynia, or some other sickness or trial in your life, never surrender and never allow despair to overcome you. Press forward and know that tomorrow is a new day – full of possibility and hope.

Vulvodynia can be a lonely affliction. When I was diagnosed I informed the women in my family, because I developed vulvodynia as a result of an allergic reaction to Macrobid and I didn’t want them to suffer a similar fate. Afterwards, they never inquired about my progress in getting treatment. It is simply something many people don’t want to know about you. My husband and best friend have been my rocks. When I had no credibility with the various doctors I saw, I always had it with them. If I didn’t have their understanding, I would have doubted my sanity. I’ve come to know that my husband truly loves me. We were unable to be intimate for two years and he never made demands of me or lost his patience. In fact, he became my patient advocate. I always felt that it was my usefulness that made me worthy of affection, but I was wrong.

For 15 years, I found relief from vulvodynia with Zoloft. But once I reached menopause, the drug was no longer effective. So now I am going through drug trials again. Exercise helps. Walking releases endorphins and helps me keep depression at bay. Patience is key. Although I’m currently uncomfortable, because I found a solution before, I know that another one is out there for me. I just have to find it!

Vulvodynia has made me a stronger person. Through everything, I worked full time, took care of my family and elderly relatives and even started an after-school program for the PTA, all while in searing pain. If I can do that, I know that I can handle anything. I’m now better-equipped to handle the typical aches and pains that come with aging. Healthy people are bowled over by such things, but I take them in stride because most of these pains are temporary as opposed to the constant pain of vulvodynia. So my knees hurt when I crouch down to get something – big deal! When the tasks at hand seem overwhelming, I break them down into smaller pieces. I tell myself, “Just make the bed and see how it goes. Just fold the laundry and take a break.” I concentrate on one foot in front of the other, not the finish line.

Be a warrior for yourself! As a phone support person, I found a few women who were too willing to sink into despair and helplessness. You need to educate yourself so you can speak intelligently with your doctor. You need to be open to any solution. I have spoken to a number of women who dismiss certain therapies based on fear. There is no one-size-fits-all solution for vulvodynia. I had read in a prior NVA News article that Zoloft doesn’t help most people with chronic pain, including vulvodynia, yet it kept me pain free for 15 years! You don’t know what works until you try. Go into the doctor’s office with a written list of questions. Bring them articles you have found. Let them know that you are proactive and not willing to give up and go away. And if they throw up their hands and say they can’t help you (that happened to me!) then ask them to tell you who can. And when nobody else does, believe in yourself!