vulvodynia

Posted by mateymate @mateymate, Jun 27, 2012

Has anyone had any treatments at Mayo Clinic for Vulvodynia. If so, what was the outcome in terms of eliminating the chronic pain?

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I have not, but I have heard that a number of women who suspected vulvodynia while pregnant actually had vulvar varicosities, which is a far less significant health condition.

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@pamegannp

I have not, but I have heard that a number of women who suspected vulvodynia while pregnant actually had vulvar varicosities, which is a far less significant health condition.

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Thanks, Pam. If anyone has been treated at the Mayo clinic for vulvodynia, please let me know if the treatment was successfull. Thanks!

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@pamegannp

I have not, but I have heard that a number of women who suspected vulvodynia while pregnant actually had vulvar varicosities, which is a far less significant health condition.

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To the best of my knowledge, there is no known treatment for vulvodynia. Let’s just hope progress has been made since I last read about it, or that my sources lack in credibility…

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@pamegannp

I have not, but I have heard that a number of women who suspected vulvodynia while pregnant actually had vulvar varicosities, which is a far less significant health condition.

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You may want to try treatment by way of compression therapy. There’s a Michigan-based company that makes a product called a V2 Supporter that is used to treat vulvar varicosities. Maybe it would help bring relief to those suffering from vulvodynia.

I can’t promise it will work, but I also don’t know that it’s ever been tried. Here’s the URL: http://www.eganmedical.com/V2-Supporter-p/ormt-v2s.htm

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Has anybody suffered from vulvodynia? I have extreme discomfort (burning and tingling in the vulva) which has been diagnosed by my GP. Apparently that is the diagnosis when there is no other condition to explain the symptoms. He has referred me to a gynaecologist, appointment next week. Strangely I only get these symptoms at night but it is driving me crazy as I can’t sleep. I would be grateful to hear of anybody else’s experience.

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@lizziemnz Your symptoms sound like they are impacting your sleep. I'm sure you are looking forward to your upcoming appointment with the gynecologists.

You will notice that I moved your question to a previous discussion on this topic. I did so there was a central location for members to connect.

Below I have linked a discussion that names your diagnosis and expands on a treatment. @jenniferhunter started that discussion and she may know of other treatment.
– Myofascial Release Therapy (MFR) for treating compression and pain https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain

May I ask if your GP suggested any symptom management treatment?

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@lizziemnz

Has anybody suffered from vulvodynia? I have extreme discomfort (burning and tingling in the vulva) which has been diagnosed by my GP. Apparently that is the diagnosis when there is no other condition to explain the symptoms. He has referred me to a gynaecologist, appointment next week. Strangely I only get these symptoms at night but it is driving me crazy as I can’t sleep. I would be grateful to hear of anybody else’s experience.

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I had burning and itching that was very intense. My gynecologist said it was atrophy of the vulva from being post menopausal. Nothing he prescribed for me worked.
I had an appointment with my endocrinologist and he prescribed clotrimazole-betamethasone 1-0.05 % cream
It worked within 24 hours! I had tested negative for yeast, but this doc was sure this would work. It did!
I used it for 2 weeks and all is solved. Hope this or something works for you. I don't think you realize how much discomfort
you have unless you experience it yourself!!

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@erikas

@lizziemnz Your symptoms sound like they are impacting your sleep. I'm sure you are looking forward to your upcoming appointment with the gynecologists.

You will notice that I moved your question to a previous discussion on this topic. I did so there was a central location for members to connect.

Below I have linked a discussion that names your diagnosis and expands on a treatment. @jenniferhunter started that discussion and she may know of other treatment.
– Myofascial Release Therapy (MFR) for treating compression and pain https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain

May I ask if your GP suggested any symptom management treatment?

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Thank you Erika. I was first prescribed a hormone cream which was ineffective, then a steroid cream which made my symptoms worse, I am now taking 50mg of amitriptlyne a day (started at 10 then 25mg). This seemed to help at first but the benefit did not last.

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I was diagnosed with vulvodynia several years ago. My symptoms were a severe scratchy, burning in vulva. Found creams did not work. In fact, creams made it worse. Was finally prescribed gabapentin (Neurontin) after seeing several doctors. It took a while to take effect and I did need to increase the dosage as per the doctor's instructions, but it worked! If you are not opposed to taking medications, you may want to consider speaking to your doctor about it. It works on nerve pain although was originally formulated to treat people with seizures.

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I understand and dealt with it for years. It was not based upon a vaginal yeast infection.
This sounds like hocus pocus, but I went on an anti-inflammation diet in which you give up processed sugar and limit natural sugar. During the 2-3 month detox I had to give up all carbs After 6 weeks the burning improved. It took a total 3 months to calm my vaginal linings.
Although I didn't have exterior yeast symptom's I followed this yeast diet plant, The Yeast Connection Handbook by William Crooke, MD, inexpensive and an easy read for those of us with no medical background. It made sense to me. It explains how yeast living in our colon is the cause. The yeast must die out, starve it out denying what it feeds on, sugar and carbs.
The maintenance plan is doable, the detox is brutal. Requires will power. Today I eat natural sugar as in fruit daily and allow myself carbs with one meal a day. The detox is brutal, you will be surprised at the reaction your body has while the yeast is dying.
This diet gave me my life back. I've been on it for at least 4 years and will never resume eating processed sugar again. It will take a year to get over sugar cravings. I made up a jingle while craving sugar. You are allowed Stevia, a sweetner which comes from a plant and it's delicious.
"When will you learn,
It's going to make you burn".
I had to brainwash repeating this over and over, it help resist temptation.
If you have thinning or dryness based on age or lack of estrogen that is also a cause and you can have both issues.

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@lizziemnz

Has anybody suffered from vulvodynia? I have extreme discomfort (burning and tingling in the vulva) which has been diagnosed by my GP. Apparently that is the diagnosis when there is no other condition to explain the symptoms. He has referred me to a gynaecologist, appointment next week. Strangely I only get these symptoms at night but it is driving me crazy as I can’t sleep. I would be grateful to hear of anybody else’s experience.

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I have been suffering from Vulvodynia for 4 years. It gets worse when I sit. I have been to many doctors and taken many medications and done physical therapy and nothing really works. Sitting makes it worse. The pain is similar to diabetic pain but in my vulva and vagina. The pain I have is a burning pain in my vulva and opening to my vagina. I started taking lyrica and it seemed to help a little but the lyrica doesn’t work if I am not careful how I sit down. I even sit on a doughnut to make me not hurt as much. I just had shoulder surgery and was put on a pain medication which also helps my Vulvodynia. No doctor will prescribe pain medication such as oxycodone-acetaminophen for Vulvodynia.

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Has any one had experience in chronic pain in your vulva and vagina. This first start d when I would sit and now I have the pain all the time. Do you know a doctor, medication or anything that helps.

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