Lyrica vulvodynia

Common Questions and Answers about Lyrica vulvodynia

lyrica

has there been any new cures or treatments available for women suffering from vulvodynia? i would love to hear from anyone.
I understand their are thousands of us who have vulvodynia. What can we do to relieve the pain?
Can vulvodynia occur in African American women? I have had a burning sensation consistenlty for the last three months that intensifies during every menstrual cycle. I have been tested for everything with no positives except for HSV1. Two doctors have said I don't have herpes, but I am still irritated and they don't have any answers. Can this be vulvodynia? I am 28!
Hi,I have had vulvodynia for 8yrs.I have know idea what started it,and you are very right about the doctors i dont know why they wont do more studies on this disease!I have been to many doctors that had know clue what it is.It is very hard to treat,I have tryed so many things with know help! I have some good days and some very bad ones! Good thing my husband is a very understanding man.I get on the internet hoping to find something new about it,but its always more of the same!
Sometimes there is also a slightly painful feeling that feels like maybe the skin has a cut on it or something, maybe like a raw feeling yet visibly there is nothing there. I've heard some of you talk about vulvodynia and I have done a little research on it and quite frankly it's making me pretty nervous. It seems like most women don't get any relief from the symptoms and further more, it seems like most doctors either don't know what it is or don't know what to do for it.
I need to find either a vulvular specialist or neurologist who treats pudendal neuralgia in the Miami, FL area. I have seen 13 doctors for extreme vulvodynia (specifically clitoridynia) which is getting worse by the day and have had no relief from every medication imaginable (Elavil, Neurontin,Lyrica, opiods, compounded meds, lidocaine). I need a non-medication approach like nerve block, but every neurologist I've contacted does not treat this disorder. HELP!!
It is just really hard to deal with sometimes because I feel so alone and nobody seems to know what vulvodynia/vestibulitis is. Anybody I tell looks at me like I have three heads and somebody even said to me "I can understand why you think you'll never have a boyfriend again." That made me feel really good. BUT I am trying to stay optimistic and hopeful that I can manage this.
Neurontin and Trileptal I didn't take it long b/c I noticed nothing. I just started taking Lyrica 75mg 3x a day started about almost 2 weeks ago. I am confused b/c I know that Lyrica can cause some really big side effects and I can't tell if I am having w/d from detoxing off of fentanyl or is it Lyrica. I know it causes major weight gain and I don't need that. I know a girl who has been on it for a year and has my same med. problems.
I WILL BE A MONTH TOMMOROW THANK GOD. WELL I'VE BEEN ON LYRICA 75MG 3 X A DAY AND I TOLD MY PSYCHIATRST YESTERDAY THAT I WANT OFF B/C OF THE SIDE EFFECTS I'VE HAD...ALREADY HAVE A METABOLIC DISORDER...PCOS WITH INSULIN RESISTANCE AND IT MAKES ME VERY DIZZY AND WEAK,ETC. MY PAIN DISORDER IS CHRONIC INTERSTITIAL CYSTIS AND VULVODYNIA BASICLY PELVIC PAIN SYNDROME. THE DOCS DON'T SEEM TO KNOW MUCH ABOUT LYRICA W/D. I HAD TO REMIND HIM YOU HAVE TO WEAN OFF.
My urologist has tried various inserts into the vaginal area and followed up with a Interstim procedure test. Nothing helps. She now has me on Lyrica but that isn't working. I'm considering seeing a neurologist. I can't sit for more than 1 minute at a time. Doesn't hurt when I stand or lay down. Has anybody heard of this condition?
I suffered from undiagnosed vaginal pain for almost a year before I was diagnosed with vulvodynia. My doctor thinks it was caused by an e.coli and/or herpes infection(I never had an outbreak). The virus damaged the nerves. Well, I have been taking Lyrica for about 9 months, and it has been a life saver. I have almost no pain. I feel 99% better! Good Luck and hang in there!
I suffered from undiagnosed vaginal pain for almost a year before I was diagnosed with vulvodynia. My doctor thinks it was caused by an e.coli and/or herpes infection(I never had an outbreak). The virus damaged the nerves. Well, I have been taking Lyrica for about 9 months, and it has been a life saver. I have almost no pain. I feel 99% better! Good Luck and hang in there!
it will get better.
I have Chronic Interstitial Cystis and Chronic Vulvodynia and I.B.S., basicly Pelvin pain Syndrrome , etc. Well the pain is excruciating! I already feel like **** from detoxing! I am so exusted, and can only lay in bed with the heating pad for my bladder,but,etc,I walk around and try to do somethings and then feel like Im gonna collaspe. I am sooo sleep deprived....Ive tried trazadone,sereoqol, melatonin, valerian, kava kava, sonata,abmbian and the cr one, lunesta, rozarom.
As I read the post about vulvodynia, and burning feet (both of which I sometimes have. My Dad has it one little toe, and it never moved beyond that.). it came to me that the pain we have is best characterized as (1) occurring anywhere in the body, internally or externally, (2) occurring in a random pattern, (3) occurring in random intensity, and varying types. ````Our pain can be sharp and stabbing, or hot and itchy, or dull and achey, or all of the above. Or something completely different.
I suffer constanly from Intersticial Cystis and Vulvodynia, and IBS problems. I can't do anything, or function. I have taken 800 motrin, Zanaflex, or Flexaril, bladder meds, advil, naprosen, nuerontin, elavil, lyrica. None of it helps. I live with the heating pad and take hot baths. My tolerance is so high from being on the Fentanyl. I don't want to be on pain meds anymore and don't want to go through the HELL detox again.
HPV and HSV are an extremely common combination, and I personally believe that it is either one or the other that causes vulvodynia (vulvar burning pain). This condition is extremely hard to treat, and I don't know of any standard therapy that works. One possiblity is to try antiviral medications such as Acyclovir. The dark spot that you mention should probably be evaluated--it theoretically could be hpv. More likely it is just a normal pigmentation, but keep an eye on it for changes!
every doctor I have seen tells me it is not related. I have been told I have neruopathy, vulvodynia, fibromyalgia, possibly ms or transverse myelitis. I am on prozac, neurontin, a beta blocker, pain pills, elavil & at times a muscle relaxer this is getting ridiculous. Any suggestions? I have been thinking of getting all my records and going to Cleveland or Mayo Clinic!
The herpes probably caused nerve damage which causes me constant vaginal pain (vulvodynia). I'm taking acyclovir for herpes and Lyrica for the vulvodynia. At least I have some answers, but I don't like the answers.
I had a red, swollen, painful vagina for almost a year before I finally found a doctor who correctly diagnosed me. He diagnosed me with vulvodynia which was probably caused by nerve damage by the herpes virus. He prescribed Lyrica to help with the nerve pain. The pain and swelling was 95% better for about 3 years. Unfortunately, my symptoms recently returned, and I have started taking Lyrica again. I have never had a noticeable genital herpes outbreak, but I get herpes in my nose frequently.
This is a difficult condition, and you are absolutely correct that no one in the medical community knows or agrees on much about vulvodynia. In my experience it is a chronic condition that rarely resolves. I have read about lots of different approaches, and actually surgery seems to have one of the better success rates. If I were to recommend surgery, though I would definitely send my patient to a specialty center where this type of surgery is done every day.
The pain is still excruciating but I have hope. I went to the NVA.org site (National vulvodynia association) and found an ob-gyn in my area that deals with vulvar pain. I called her Monday morning at 8am and got to see her that day. She scheduled an MRI for Thursday. I don't know the results yet, but I feel we are getting closer to an answer. I have been flat on my back in bed with ice between my legs for 6 days now. I do get some relief from the ice. Thank God.
I would have to take 2 1/2 norco b/c my tolerance is so high. I have chronic interstitial cystis and vulvodynia and IBS probelms. Basicly severe pelvic pain....muscle pain and nerve pain. It's hell. I have taken all non narcotic pain meds and mucles relaxers, lyrica, nuerontin, elavil and nothing works. I am supposed to go to PT to help stretch out those muscles down there. I hope it helps but I heard its very painful. They only have one PT that specializes in that area in Louisiana.
I also have a surgical procedure called radio frequency that will almost get rid of my Interstitial cystis pain and vulvodynia pain and help even with IBS. Problem is your in severe pain for ablout a week. its worse than a broken tailbone. Anyway, I never had a problem stopping taking pain medication as long as in out of the severe pain. Ive always hated taking pain meds and I never got that high feeling or cravings.
If you have any questions feel free to ask, I'll do my best to answer anything I can. I also tried flexaril and lyrica, the lyrica made me gain weight and made me sedated and forgetful. In the end what has almost cured my chronic pain I did have was the physical therapy, Im not sure if this is possible for you, but if so by all means do it. Start out real slow and light, maybe in the pool and spa at first for awhile, it will only benefit you in the end.
i took these medications for my painful disease which is called chronic interstitial cystis and vulvodynia, basicly pelvic pain syndrome. its hell, well i started seeing a pain specialist who could do these treatments to really help with my pain and im waiting on a pain pace maker!!!. people who live in pain try it.
I also suffer from Interstitial Cystitis, Vulvodynia, and IBS, which are all trademarks of a Fibro sufferer. My entire family died by the time I was 19 from cancer due to pesticide poisoning. 60 minutes did a piece on it about 15 years ago naming my valley "cancer valley" with 5x's the national rate for kindergarden cancer.
The vaginal pains sound an awful like Vulvar vestibulitis (VVS) or Vulvodynia both are pain conditions that occur in the vulvar area, externally in the labia, clitoris basically the entire are as well as causing pain internally in some people. Both are linked to heightened nerve activity, hyper sensitive nerves in the area or more than the 'normal' amount of nerve down there.
Currently, my gyno is trying to fgure out if I have inflammatory vaginitis, vulvodynia, or ??????. Please let me know what has/has not worked for you. I am searching for hope and hopefully a cure. Thanks!
I have had a couple of yeast infections during that time which makes me wonder if that is causing the buzzing even though the yeast infections are gone - I've read that a suspected cause of vulvodynia is 'hypersensitivity to yeast infections', but typically the symptoms of vulvodynia involve pain. None of you hear are describing pain - just this infernal nerve buzzing. I will do my best to report back.
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