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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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paisley52 | @paisley52 | May 24, 2025
In reply to @gingerly "I was diagnosed with vulvodynia several years ago. My symptoms were a severe scratchy, burning in..." + (show)
Profile picture for gingerly @gingerly

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 take Gapentin and it helps a lot. I've had to increase my dose,but I'll try anything.

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paisley52 | @paisley52 | May 24, 2025
In reply to @francesmharris123 "Has any one had experience in chronic pain in your vulva and vagina. This first start..." + (show)
Profile picture for francesmharris123 @francesmharris123

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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I've had vulvodynia for a long time. In the beginning they didn't know what it was. I go to a dr at the Mass General in Boston. She put me on gabapentin and estradoil. I would start there.

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paisley52 | @paisley52 | May 26, 2025
In reply to @prudence21 "I just started having these painful symptoms. Over the last two months I have been to..." + (show)
Profile picture for prudence21 @prudence21

I just started having these painful symptoms. Over the last two months I have been to several doctors and GYNs and they are not sure what is wrong, but have ruled out any yeast, bacterial or virus. They say I have atrophy of the vulva (most likely the vagina as well), and have prescribed estrogen cream. As I am in a heightened state of pain and itching (comes and goes, but it seems like it is always there) over the last few weeks, topical relief seems to be the only help. The estrogen cream seems to make it burn and itch more, so I have held off on that treatment for a few days to get some relief. I also have been diagnosed with neuropathy for the last four years, and experience many symptoms of Sjgorens as well. Up till now, I have been managing my symptoms, but this is a horror! Most doctors don't have any true understanding of neoropathy and treat symptoms as best they can. I must say I am frustrated by all the expensive and ineffective prescriptions my GYN and doctor have thrown at this over the last month or so with little result. Can anyone relate and is there a next step for me?

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I am also managing my vulvodynia right now,but unfortunately I never know when it will come on. I've missed special times because of this. I am on estrogen and gabapentin. If anyone has any other tips I'd be glad to hear it.

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paisley52 | @paisley52 | May 26, 2025

I am having a flare up and have been using ice to sooth it. I try aquaphor. Does anyone have a suggestions that have worked for burning. Tks

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paisley52 | @paisley52 | May 30, 2025

Everytime I put a cream on vulvodynia it burns more. Has anyone had this same experience. It seems nothing works,but sitz baths and ice. So frustrated

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blueskies1530 | @blueskies1530 | May 31, 2025
In reply to @paisley52 "Everytime I put a cream on vulvodynia it burns more. Has anyone had this same experience...." + (show)
Profile picture for paisley52 @paisley52

Everytime I put a cream on vulvodynia it burns more. Has anyone had this same experience. It seems nothing works,but sitz baths and ice. So frustrated

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Compounded DCBG cream: diclofenac, cyclobenzaprine, baclofen, gabapentin. There's about two more ingredients that are just part of compounding and I'd have to look them up.

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paisley52 | @paisley52 | Jun 3, 2025

I've had vulvodynia for 2 wks now. Can anyone tell me how long it last for them. In the past I've had it for about month. Has anyone tried the amitriptylne cream and does it help.

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paisley52 | @paisley52 | Jun 5, 2025

I am undergoing treatment now at Mass General, Boston. My treatment is gabapentin and estradoil. My Dr wants me to try pelvic floor therapy also. I am just having a flare after a pap smear so still in process of getting under control. Hope this helps you.

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paisley52 | @paisley52 | Jun 7, 2025
In reply to @blueskies1530 "Compounded DCBG cream: diclofenac, cyclobenzaprine, baclofen, gabapentin. There's about two more ingredients that are just part..." + (show)
Profile picture for blueskies1530 @blueskies1530

Compounded DCBG cream: diclofenac, cyclobenzaprine, baclofen, gabapentin. There's about two more ingredients that are just part of compounding and I'd have to look them up.

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Hi bluefish,
Do you get relief from this compound?
Thanks

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