Announcement

Collapse
No announcement yet.

Diagnosed with Vulvodyna

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Diagnosed with Vulvodyna


    I have recently been diagnosed with (surface only) vulva vestibulitis or vulvodynia. What have other poeple done to treat this disease? My doctor is opting for laser surgery in June. Is this too soon? What other treatments are effective at relieving this condition? Thanks..
    Amy

  • #2
    I am on a small dose of Neuronton and it's helping me sooooooo much.
    Hope this helps some teri
    teri
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

    Comment


    • #3
      Originally posted by Teri:
      I am on a small dose of Neuronton and it's helping me sooooooo much.
      Hope this helps some teri
      Sherry and Teri thanks for answering my questions. I guess I am wondering what to do for treatment instead of the laser? One doctor, a different one than I am currently seeing, did want to give me a surgical vulvectomy and I DID say no way. The vestibulitis doesn't bother me at all, only when I try to have intercourse. Does this even sound right? What are your symptoms like? Do they get worse over time? What kind of drug is Neurontin? Does it also help with IC symtoms? If I could get the pain upon intercourse under control I wouldn't need any type of laser surgery. What do you reccomend? Thanks...Amy

      Comment


      • #4
        I have vulvodania also and IC. I was in horrible pain ( could not stop cying- that bad) and the gyn was debating elavil and nuerontin. He upped my dose of Elavil since I was already prescribed and on it by a previous doctor . The gYN upped the dose to 50 but so far 40 mgs is all I can do and function in the AM. The higher dose has helped so much with the uretheral pain and urination pain. I still can't sit though on that area so it drives me nuts to be lying downm or walking. I am trying to increase my dose but Elavil makes it hard to wake up as you start taking it. You have to do it slowly and the hangovers which are like those you get on Benadryl get less as you go along. If it doesn't work long term we have decided to try neurontin. Intercourse is not an option for me due to pain and has not been for years. I m not happy about that!!Too much pain! I can't imagine ever having a normal sex life. Have had to be very creative in that regard and even so I get pain with any motion that creates friction in that area. I am really hoping if my bladder gets healed on Elmiron and if I can conquer the vulvodaynia maybe I can have some semblance of a sex life. Maybe not but I hope so.To stay pain free I just can't sit!!!!This sets the uretera into intense apin. This is nuts! Welcome!!! Hugs and thanks for the ear!!! Carolyn
        Originally posted by akfickett:

        I have recently been diagnosed with (surface only) vulva vestibulitis or vulvodynia. What have other poeple done to treat this disease? My doctor is opting for laser surgery in June. Is this too soon? What other treatments are effective at relieving this condition? Thanks..
        Amy
        "If you have the heart of a child, you can always look for the rainbow. " Carolyn

        Comment


        • #5
          I can't take the elavil....causes a HORRIBLE personality change in me, and it makes me a reallllllllllly NOT nice person. That's why my uro tried the neurontin, which is used for nerve pain. I started on 300mg at night, then increased it to 300 mg am and pm and and now taking 300 mg 3x's a day. By increasing the doseage really slowly I have had very few if any side effects. AND, IT'S WORKING!!!!!! I can tell when it's time to take a pill because the itching and burning start again.

          I had been taking neurontin for the IC pain last year while I was going to a pain clinic. I went off of it in Nov, thinking it wasn't helping. Well, I found out after a few months how much it was helping. I am going to work myself back up to the 1800 mg a day that I used to be on and am hoping that it will start to help with the bladder burning again.

          It's been months since I have tried to have intercourse and to tell the truth, I'm scared to death to try it again

          hugs teri
          teri
          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

          Comment


          • #6
            My physical therapist thought I may have vulvadynia, though I have not talked about it with my doctor yet. I was curious about how is it diagnosed?

            Amanda
            ([email protected])

            Comment


            • #7
              Originally posted by Amanda:
              My physical therapist thought I may have vulvadynia, though I have not talked about it with my doctor yet. I was curious about how is it diagnosed?

              Amanda
              ([email protected])
              Hi Amanda,

              I don't know exactly how it is diagnosed, but my doctor did what they call a "q-tip" test. If he touches certain places on the surface of my vulva with a "Q'tip", it is painful, and thus indicative of vulvadynia. I would contact the Vulva Pain Foundation and ask them how it is properly diagnosed. I was misdiagnised a few times. I was told that I had a yeast infection, etc. Hope this helps. Amy

              Comment


              • #8
                www.vulvarpainfoundation.org is a website someone here suggested. You might want to check it out.
                Kat

                Comment


                • #9
                  Raw Feeling

                  I have vulvodyna as well as fibromyalga. I also have IC. Sometimes my labia area feels so raw!! Anyone have any suggestuions on how to relieve this terrible feeling? Also I take neurontin and Elmiron. They both help alot but when my vulva area acts up I want to jump off a bridge!Sometimes it feels like electricity is all around my bladder and vaginal area. Just need to talk to someone who understands my pain . Thanks. PS After eating chocolate or soda everything is worse. Mary O

                  Comment


                  • #10
                    Hi Mary and welcome to the board
                    I am sorry to read of your awfull symptoms but you are in company here with all of us suffering some of all those symptoms and others as well
                    i know too well the experience of elctric shocks in my bladder, urethra and vulva, i undestnad the feeling of wanting to jump off something or climb walls or just senselessly shout endlessly. I dont know if i would ever stop screaming if i started. i hurt so badly.
                    i hope you find some comfort by reading what others experience and what they do to lessen their symptoms
                    Its great that you have noticed that diet plays a major role in how much pain you experience, please spend some time in the diet area of the site and begin the IC diet, i hope it works some magic for you.
                    happy to meet you here
                    lisa

                    Comment


                    • #11
                      I understand

                      Mary,

                      I too have the same raw feeling. I find that Lyrica helps a bit, cold packs, and rinsing off with water after I pee, no toilet paper. I also use tampons only now and when I can, I take off my pants and underware to let it breathe. I don't have kids so I can do this at home. Frequent showers with no soap or bath oils, just water. This is just what helps me.

                      When I do start a flare, it's very hard to stop it. I see my Doctor in February. I will be asking about other methods of relief.

                      I hope you get some relief and find some useful information on that website that Kat listed for you.

                      HUGS!

                      Kara
                      Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                      "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                      I also have some journals of my journeys, past and some present at:
                      http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                      Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                      Comment


                      • #12
                        Lisa lau

                        Thanks for replying to me. I feel so lonely sometimes and there have been times when I wanted to die. If it were not for my son I do not know what I would do. After one year suffering with pain and going to the Gyno and other Dr.s. I finally found out about the Ic after a painful cystcope. My gyno does not really believe (I think) That I have vulvodyna. But he always listens to my complaints. I know from reading about vulvodyna and other conditions from reading so much about them. My remotologists told me I have fibro and thats when I discovered so many women with fibro have this as well. Its scary because sometimes it feels like vaginitis or a bladder infection. I cant tell you how many times I have been to the drs. last year. The rawness and the nerve pain are the worst. Especially when I feel like I have to pee all the time. Anyway I am so happy that I found this web site. This has been the worst thing that has ever happened to me. Mary

                        Comment


                        • #13
                          Ginny I to know how youfeel and I wish the best for you. Try neurontin it does help. Also diet helps too. When I walk it hurts too. Just touching my vagina hurts. I will pray for you feel better!! Marysxx

                          Comment


                          • #14
                            Ginny -- The IC cushion (available in the ICNSHOP on this site) is a lifesaver for being able to sit. You should take a look at it.
                            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                            Wishing you happiness and good health, and all the best out of life.

                            Peace, Carolyn
                            ___________________________________________________

                            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                            On the Beach with IC

                            Comment

                            Working...
                            X