Pelvic Pain Support Network

Vulvodynia or pudundel neuropathy?!?!?!?

Okay, I have been to over 12 doctors. Every single doctor agrees they see redness on left side of vulva that is slightly swelled now But one doctor says it's the nerve, and most say it's not, but they don't know what is causing the redness.. well the past 3 days have been bad. Have not been to work. I used to burn before when I pee.. well when the urine hits the left side, but now I really burn!!!! It's very debilitating after I pee then stand up and start walking. This pain has changed so much in past months. Usually it was a stinging all day that went into left groin a little, but always had the redness no matter how much the pain changed.. and it's always been the left side. I used to be able to push in the pain and re create it with touch, but now it's severely burning. I went to my dr crying the other day and he pretty much told me he thinks the estrace that the other dr prescribed caused a bigger flare up. Im on amitriplyline, gabapentin, medical marj, prednisone for 5 day. Does anyone have a damn clue?! I was just looking into Fowler gyn international. My dr said they have given me all creams, and meds.. only being the gaba and ami. And that no one will be able to figure this out. Also, my other dr wants me to get pudundel nerve block.

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Has any of your doctors suggested a levator avulsion? Just ask a gyn?

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Nope. I have never heard of that

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Have you gone to a pelvic floor physical therapist?

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Yep. She isn't convinced it's my nerve. She notices the redness too. She does feel spasms where the redness is. Very superficial. And a tense floor but not bad.

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I had that also when I had my prolapse. It has go away. Not the prolapse. I wondered if it was my body’ reaction to the trauma. The pelvic area is so complicated.

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Have you had a microbiology sample tested from a swab ? Could it be a bacterial or yeast infection?

It does NOT sound like pudendal neuralgia at all. Can you sit? Can you sit pain free on a toilet seat?

What helps? Ice or heat?

Do you feel electrocuted?

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I have had cultures taken everything comes back normal. This has been going on for ten months. Now I'm raw on one side and it burns and stings all day especially when I pee. Dr thinks because it's on one side it's pudundel nerve. I have stinging thay shoots into my groin and sometimes pain when sitting. It's mostly the vulva that hurts. What do u think? Thinking about going to Fowler gyn in Arizona.

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I have nerve damage (chemical reaction to dr. using a cream with sulfur which I am allergic to, was burnt inside & outside of vigina) I can NOT wear clothing that touch that touch area. And VERY HEAT sensitive (summer is dreadful). I will start day ONLY PAIN WHEN I SIT and then after 4 hours up I am raw, it is as if the DAMAGED NERVES are sending signals to skin, that I'm being burnt! THE ONLY CREAMS THAT HAVE HELPED ME IS CLOBETASOL 0.05% (only short term use), and a 5 ingredients mix, which my NEUROLOGIST had mixed for me. I HAD DAMAGE OCCURE AUG. OF 2016 and still can't sit more than 10 mins, without having pain! BUT the rawness has gone, which helps to no end. DREADING summer coming back, as I have not had this mixed cream last fall, praying that the summer heat does not RE-activate!

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Have u tried a pudundel nerve block? That's my next step

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I’ve had the same thing , for 3 1/2 years Botox injections and pelvic therapy helped 30 percent they don’t know what it is

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Do u feel better now?

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go on the Dellon Institute Website and email Dr. Dellon with your questions. he may be able to give you some answers, he always writes back. good luck

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Thank you!

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Hi Leah. What you describe sounds just like what I have. I was sent to a dermatologist and diagnosed with eczema. I now have about 95% improvement. It may be worth a try. Please let me know.

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Hi, what did they do to treat That? I have been prescibed probably all the topical meds, and nothing has helped

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It was a few things. Only use Cetapil cleanser on my vulva when I shower, use Water wipes ( inbetween topical medication application), Aquaphor ointment, Protopic ointment and Desonide ointment. Oh and free and clear laundry detergent only for my underwear. It took work but, it wasn't that long before I started seeing improvements. I have Pudendal neuralgia and Vulvadynia. My soreness is confined to the left side just like yours. It came out of no where. Make an appointment with a dermatologist and let me know how it goes. I wish you luck.

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I almost forgot. Estradiol is good for vulva health. If it is from a regular pharmacy it may be the base so you may want to get it from a compound pharmacy and if you already get it from a compound pharmacy talk to a pharmacist about using a more hypoallergenic base. Please let me know how you make out.

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