Diagnosed with Vulvodyna

[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

[Teri]

I am on a small dose of Neuronton and it's helping me sooooooo much.
Hope this helps some teri

[akfickett]

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

[Ginny Doll]

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

[Teri]

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

[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])

[akfickett]

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

[kat]

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

[marysxx]

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

[lisalau]

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

[Kara29]

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

[marysxx]

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

[marysxx]

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

[Berkshire Road]

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.