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Any Advice for Vulvodynia

By October 17, 2014 - 7:05pm
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I'm feeling really low right now and was wondering if anyone could help me. I have had vulvar burning for the past 14 months. When it started.. I was sexually active at the time. I remember getting a yeast infection which was confirmed by a swab. I took the diflucan that was prescribed but I remember thinking it was odd that the itching eventually turned into burning. Everytime I had sex the burning would start about 6 hours later and would be intense but it would eventually subside. I eventually ended that relationship. I couldn't to have mild burning that slowly resided after about 6 months. (I also had gentle pelvic floor therapy at the time, too). In May, 2014 I got into a relationship and we became sexually active 4 weeks after that. Soon after the burning came back but instead of subsiding it remained. I tried pelvic floor therapy again but it did not help. I have not had sexual activity in about 2 months and the burning is still there. We eventually broke up over it and I'm still crushed. Some treatments I have tried: various anti-convulsants, anti-depressants, lidocaine ointment (ouch), gabapentin/baclofen/amitryptiline cream, testosterone oil. I also had a prudendal nerve block which did not help. They are suggesting blocks in the vulvar area which I have to wait until next month to try this. After that they are suggesting I go out to Washington DC to see the Specialist out there. Does anyone know if they do a test to determine how active the nerves are in the vestibule area? I thought I had read this somewhere? Can anyone suggest any other ideas? I also have chronic facial pain so I don't know if this is central nervous system related.

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Thank you for responding! It is helpful to get the support!

I do have a Neurologist that I see on a regular basis and he thinks there is a connection between the facial pain I have as well as the Vulvar burning. The problem is I have tried a few combinations of anti-depressants and anti-convulsants and I just haven't found a combo that will work. I do also try to walk about a half an hour once or even twice a day and I have also tried accupuncture and massage. (I just went to the accupuncturist this morning). I am also seeing a Psychologist once or twice a week. I feel comfortable talking about the sexual issues but sometimes I feel like I go and just vent and I don't get very much advice back. I may consider switching psychologists. I am going to be trying a Lidocaine Infusion. There is a neurosurgeon who has conducted these in my area which have shown to reduce chronic pain. I'm just waiting on insurance approval. I am truly dedicated to getting better but I feel like unless another nerve block or the lidocaine infusion works, I think I will have to consider the Specialist out in DC. I think this pain is a combination of inflammation from a former infection and the fact that I have a heightened central nervous system which means I feel pain more. I do appreciate you commending on my Post. I live in Michigan and we celebrate a holiday (which happens to be today) called Sweetest Day. (I don't think it's anywhere else in the U.S. - maybe Indiana). It's like Valentine's Day in October. I miss the man I was dating over the summer. I wish he could see how hard I am working to try to be 'normal' again. :(. I will keep trying tomorrow.

October 18, 2014 - 1:48pm

Hello leitheij,

Welcome to the EmpowHER community. Thank you for reaching out to us for help. I am truly sorry to hear that this condition has affected your relationships and continues to cause you pain.

The cause of vulvodynia remains unknown. Researchers continue to identify a cause and find better ways of treating it.

I found a website, National Vulvodynia Association.

The site offers an online teaching program, which I thought you might find helpful. http://learnpatient.nva.org/

I would like to point out two particular paragraphs:

Adopt a Healthy Lifestyle
A nutritious diet, adequate sleep and daily exercise are important for everyone, especially people with chronic pain. Eat a balanced diet with lots of vegetables and fruits, limit simple carbohydrates and unhealthy fats, and drink at least 6 glasses of water daily. If you need guidance on healthy eating, see a nutritionist. Since sleep, mood and pain are closely linked, it’s important to get enough restorative sleep. If you’re not sleeping 7 or 8 hours each night, or have difficulty falling asleep because of pain, talk to your provider. Although many people with chronic pain hesitate to exercise, unused muscles generally cause more pain than toned, flexible ones. Research shows that aerobic exercise boosts the body’s natural painkillers and enhances mood. Under the guidance of a health care professional, choose an appropriate exercise program. You don’t have to overdo it, e.g., you can start by walking 15 minutes daily. Everyday stress can also worsen pain, but you can learn to control it with meditation or relaxation techniques, such as deep breathing and yoga. Discuss stress-relieving strategies with your provider or a psychologist.

Try a Multi-Modal Treatment Approach
There may not be simple solutions to chronic pain, but that doesn’t mean improvement isn’t possible. Many treatment options exist and you can try a combination of treatments to relieve your pain. You may want to consider a regimen that includes both medical and complementary strategies. No single treatment works equally well for all women with vulvodynia and you’ll probably have to try many treatments before you find the ones that work best for you. Many women find that combining medication, physical therapy and a complementary treatment, such as acupuncture or massage, provides the greatest relief. Psychological counseling should also be considered if you feel anxious or depressed, or want to discuss your sex life or close relationships.

An individual who specializes in vulvodynia might have knowledge of more specific diagnostic testing, and if there is a correlation between chronic vulvar and facial pain.

I wonder if the issue is with how your nervous system transmits messages of pain to your brain. Have you been evaluated by a neurologist? Should this prove to be the case, treatment with a medication used to reduce symptoms associated with neuralgia might work for you.


October 18, 2014 - 9:43am
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