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  • Vulvodynia?

    Since the onset of my IC symptoms, mainly frequency, I have had another agitating side symptom. I have not figured out how to adequatly describe it to my doctor. It feels as though nerves constituting the clitoris are being inflamed from an internal source. It doesn't feel sore like a skin rash, but more like pressure from inside, making the whole area feel over-stimulated. Orgasms have a burning quality that is disconcerting.

    Is this considered vulvodynia? Since it's not really "pain", what does one take to alleviate the discomfort? Just like the sensation of needing to urinate, this just doesn't respond to any of the OTC pain meds that my doctor has told me to take.


  • #2
    I know what you're talking about but I don't know what it is either! If you find out, please post.

    Thanks and good luck!


    • #3
      In the Patient Handbook we have an excellent section on Vulvadynia.
      Patient Handbook: Related Conditions - Vulvodynia

      Also the Vulvar Pain Foundation is an excellent resource.


      • #4

        Thanks! Weird, but I forgot about my diagnosis of vulvudynia. How could one forget? Well, there are soooo many at this point (IC, IBS, FMS, etc.). And it was great for me to go back and read the info and say, oh yeah, that's what the pain is.

        So thanks for the reminder about the web page.

        Hope you're well.


        • #5
          I too have vulvodynia and clitoral pain was a big part of it. I attribute, bio-feedback for PFD and taking Elavil to my feeling much better. I too had horrible pain for about 9 years, before it was under control.


          • #6
            I have IC and vulvodynia. The vulvodynia is much improved! i could not sit for any length of time and felt like that whole area was was constant lower uretheral needle like burning that lasted after urination. Felt like my tubes were blocked or something. I was so sure it was yeast or an infection. I spent a lot of time money trying to get someone to listen and a trip or two to the ER! UGH! The OBGYN ther missed the dignosis. I changed OBGYN's and he did the q-tip swab test and felt I had it in conjunctin with IC. he had seen several similar cases. They prescribe elavil or neurontin for this condition and while elavil was a bad experience for me personally the neurontin gave immediate relief. i built up my dose to 300 mgs, 3 times a day. now i am looking to cut down to 600 mgs as i feel that the pain onset is more at noon and at dinner. I hope I can do this! I have been on elmiron also for 7 mos and really am hoping that Elmiron and careful eating has made the vulvodynia much less dramatic which hopefully will mean less pain killer, neurontin. I can sit much longer now. I also take Ditropan XL for frequency. Having both conditions at once drove me nutty! But the improvement in sitting and pain is remarkable.I was going to do dilations as i was getting desperate. Teri on the boad had similar symptoms and so I knew i wasn't crazy! Some people have luck with creams as well but I have not tried them! Thanks! Carolyn
            "If you have the heart of a child, you can always look for the rainbow. " Carolyn