My Story: The Pain of Vulvodynia

My Story: The Pain of Vulvodynia

Carol Holt

Carol Holt

I am 75 years old–I live in the Midwest and have led a very active life: exercising five times a week, golfing, volunteering, reading, and gardening. I have had lichen planus for several years, a disease that can cause pain while sitting, but it has not effected my quality of life. Then, in February of 2015, after driving eight hours to visit my daughter, I had an extreme sudden onset of pain. My active life suddenly changed. Thinking it was related to the lichen planus, I first went to my dermatologist. I was diagnosed as having vulvodynia.

I have had pain every day for seven months since this diagnosis. I went through multiple tests to try and determine the cause, but no cause was pinpointed. I was treated with amitriptyline and gabapentin up to the highest tolerable doses. There was minor relief, but the side-effects were equally as life changing: extreme constipation; very painful dry mouth; canker sores; and, most significantly, loss of short-term memory and loss of word retrieval in conversing. 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 diagnosis and treatment. She ordered a few additional creams that had no results. She then suggested a pudendal block as the next step, with the goal of getting the pain level to a five, and to begin to bring back a lifestyle I could manage.

Sadly, after four different types of blocks, I had no relief and continued to have pain many days rating up to 10. 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 could tolerate.

I have most recently 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 as I can. However, it is a very slow process. Some days the pain is a five and some days it is still up to a seven or eight, even after just light activity.

Throughout this process, I have had to educate many physicians, friends, and family on this condition. I was fortunate to be diagnosed quickly, but finding the right team of specialists to manage my treatment and my expectations along this journey has been a challenge.

My hope is that I will continue to get stronger and regain my daily schedule, and some day wake up without pain. I also want to help educate the medical community so others with this condition can find experts and relief much sooner than has been my experience.

Authored by: Carol H.

There are 7 comments for this article
  1. Kerry at 5:56 pm

    Thank you Carol! Reading these stories and comments can be so helpful! I have been undiagnosed and misdiagnosed with a diagnoses of fibromyalgia for 18 years even though I told doctors I had all these very painful little lumps all over me. I was on low dose Nortriptyline for the first 6 years when I thought it would be a good idea to stop it for one reason or another. I unfortunately didn’t put two and two together. My pain all over is unbearable burning acid like pain anyway but when it’s down there it completely became a much bigger nightmare! I think I went to at least 20 doctors and none had diagnosed it (many were urgent care doctors because I was out of town for a month). Finally a NP noticed on my medical information form I wrote I had been taking Nortriptyline but stopped. She asked me when that was. I still remember being stunned and then ecstatic that maybe it could be treated! I was really lucky that going back on worked for it. I was recently finally was diagnosed for my all over severe pain. It’s Dercums Disease (a fat disorder with painful “lipomas” or tumors in fat tissue). There are three types with Dercums Disease. The type I have is the type II with thousands of tiny rice to marble sized painful lumps all over my body (Type 1 has lipomas mainly around joints and Type 3 are larger that can occur anywhere). It dawned on me after finding out that I had Dercums Disease, that they are also inside of my pelvic floor. It’s so valuable to read these articles so now if I ever have to go off Nortriptyline I know what to try!

  2. Fee at 4:43 am

    Chris – I can completely vouch for what you are saying. Calcium citrate, low oxylate… And I would also use calendula cream to reduce burning and when really bad I had frozen bananas handy that I could just rest between my legs to numb the area. I also saw a physio and while I think the dilation helped a little, the tens machine didn’t and neither did amiltryptaline. .

  3. Tom Kocherhans at 4:39 am

    Calmare treats Vulvodynia very well. I’ve seen the tears of those who have benefited. Make sure you go to a clinci that has an experinced doctor that has treated this condiction before. Calmarett.com

  4. Carol Holt at 7:26 pm

    I spent 12 sessions with certified PT who was very knowledgeable about pelvic
    Floor exercises. It just did not help.

  5. Chris at 2:36 pm

    First of all, my prayers go out to you. I, too, sufferred from Vulvodynia for many years. I have severe aching and burning. After countless treatments, similar to those that you’ve gone through, I found my answer from an online article authored by a doctor who had worked with women with vulvodynia. I’ve shared what worked with me with many women along the way, and like me, they too found great relief. It was as simple as Calcium Citrate 600mg. (without vitamin D) 3 times a day (for the burning pain) and Glucosamine 500mg. 3 times a day (for the severe aching). It’s important that you take your doses at the same times each day (or you’ll notice breakthrough pain). Every 8 hours is best. You should start to notice a difference within 3-4 weeks.

    When I originally found this “solution,” I figured it was worth a shot as it was only supplements and could cause no harm. I’d been through countless treatment that only served to exacerbate my pain. I was told by countless specialists that “I was the worst case they had seen . . . and . . . that I’d have to learn to live with the pain.” The majority were male doctors (although female doctors could be even worse) and my reply would be, “If your penis was on fire how would you feel if I dismissed you? And better yet, how long do you think you could live with that pain!” I also followed a low oxolate diet for a time, but I couldn’t believe how something so simple could resolve the debilitating pain I’d been dealing with for so long.

    As an aside, a few years later during one of my visits to my hairdresser, I could tell that something was wrong and that she was about to break down. I knew she had been fighting some kind of medical problem, but was not aware of the specifics. Low and behold she was suffering from Vulvodynia and all the treatment were causing her more pain, side effects, and causing great financial strain. I went home after my appointment and came back with the Calcium Citrate and Glucosamine and few care items. Her fiance had recently left her due to her condition, but she was in a new relationship with a guy that seemed to understand. She had been completely unable to have sex without great pain. She ended up only needing the Calcium because she had the burning symptoms only. Within 3 weeks she was a new person. When I saw her at my next appoitment her pain was gone and she had pain-free sex for the first time. She continued with the treatment and never had the problem again. I stopped the treatment after about 18 months and for the most part have not had any major reoccurances. When I’m under a lot of stress it can reoccur but for a shorter period of time and at a much lower level of pain. I suffer with chronic pelvic pain, but when it does happen, I take the concoction for a week or so and it resolves.

    Some additional things to avoid that were equally importand was use only Northern toilet paper (avoid decorated/colored brands and charmin at all costs), switch to dye free detergent, and NEVER use fabric softener when drying underwear — cotton underwear only (size bigger might be more comfortable when symptoms are active). I still follow all these. There’s also this cream that you can order online to numb the “area” called Piyan Ping, It’s an oriental concoction. It will burn like crazy for 10-15 minutes, but it does numb the area for hours at a time. All the prescription numbing creams/ointments are useless. Also, I found VitaminShoppe.com the best place to get the Calcium Citrate (without Vit. D) and the Glucosamine (capletes, so easy to swallow). They have the best prices and often run buy one get one deals. You can sign up for their discount card/offers for free. They also have local stores depending on where you live. Just check their website.

    Sorry this was so long, just wanted to make sure to include eveything. I hope this helps you and will keep you in my prayers. Sending healing thoughts your way.

  6. Kathy Hastings at 12:56 pm

    To the author: I am having some of the same issues. Speak with your dr regarding seeing pt who specializes in pelvic floor muscles. I recently had my first appt and eval but my therapist went into labor on the day of my 2nd appt and will not be available for several weeks now. She was able to identify some areas to work on to hopefully release some of the nerves causing the pain. I will tell you the exam was much worse in my mind than in person. She did tell me I might be uncomfortable later in the day, and that was an understatement, but if this will help, I will do it.

  7. Watanya Chaiwong at 8:39 am

    Thank you for the story. I am curious what kind of treatments she has received at the new special clinic that I could probably adjust them with my patients.