His and Her Health

I have been suffering for over 2 years now I a 40 years old and have been to several drs to try and get some answers and relief. I have been tested for all kinds of stds and used all kinds of creams and anti-depressants nothing has helped. I feel very depressed and helpless. its very hard to get dressed everyday because my pants bother me. my husband is being very supportive but he really doesnt understand that i dont want anything touching me.i wake up in the morning thinking how am i going to get through another day with this constant burning. I dont know where to turn or who to ask for help because noone seems to know.is there any hope out there ?

Hi<BR>I also suffer as you do. I basically have given up on wearing pants that have zippers or are snug. If you can switch to these (I know, they're fat-lady type pants) you may have a little less burn. As you know, anything touching the area is broadcast to the brain as PAIN/BURN. The pubic hairs are major conductors of the horrendous burn, according to my neurologist because there are nerves living at the base of the hair follicles. Just more depressing information for us to know!<P>I tried anti-convulsants and anti-depressants with the same result as you -- not a heck of a lot of relief. I'm on nothing now (except for anti-virals) and am trying to weather it. About 2 weeks ago, I was ready to commit suicide. The burn for me NEVER shuts off 24/7. It brings about a special kind of mental torture that most people won't ever know (but WE know it all too well, unfortunately). <P>The medical community hasn't helped me very much at all. At this point I am investigating hypnotherapy -- the burn causes me to feel sad/depressed most of the time and I'm hoping a clinical hypnotherapist can break the "pain equals depressed feelings" cycle somehow. I am desperate to not feel so down because of this. This condition could bring the strongest person on earth right to the knees!!<P>I'm also investigating acupuncture. <P>Know that you're not alone. This is a very isolating condition. It makes you feel lonely even if you're surrounded by people. It makes you feel like everyone else is alive and you're not. This condition should be a top priority for researchers because it's positively barbaric and plain wrong to have all of us suffer all the time with no help. <P>Keep writing.

Hi ladies: I feel the same way as you guys do; just dead inside. I don't trust Drs. anymore and haven't bothered to look for a new one lately. I've thought about trying Acupuncture, but it's expensive and our crappy insurance doesn't cover it. This disorder definitely makes us feel alone. My family doesn't want to hear about it and my husband just acts like if he doesn't think about it, it will eventually go away.

xtraburden, I thank you for your reply and advice but I am a very small women and I cant wear fat pants I have tried sweat pants but they only help if i am standing, god forbid if i have to sit down. I am currently seeing a dermatologist for this problem but he just keeps giving me steroid creams and says come back in two months and tell me how it worked, to me two months is a very long time for me to say it isnt working, I just dont understand that there is nothing that can be done. these past 2+ years have been hell.

Hi Christy<BR>You're welcome. I understand about the sitting with sweat pants on -- it's that darn seam right up the middle, almost as bad as a metal zipper. People who don't have this would never understand that something as small as a seam resting on the area could do so much pain damage! My wardrobe now includes just 2 pair of pants that don't hurt (they are a cross between work-out pants and dress pants). They are loose as heck, I'm so sick of them and I would love to wear jeans again! You may be able to find something like them in small sizes in the work-out section of the store. Or buy a larger size for the looseness and pin the waist to keep them from falling down.....? <P> I used to be a size "small" but the drugs they put me on caused about a size worth of weight gain. But as you know, this burn is worse than any size increase. Underwear choice is important too. I use a specific panty from Maidenform that have very flat seams in the front. At this point I order them online because it's hard to get them in the store. No more sexy cute underwear, no sir, not with this condition!<P>Have any of the docs attempted to determine the underlying cause of your vulvadynia? A dermatologist may be good but a neurologist or vulva specialist may be better (although one woman on this board visited a vulva specialist and was VERY disappointed). It can be quite discouraging.<P>Have you been prescribed lidocaine gel or cream? It can sometimes take the edge off the stinging part of the burn. I apply it twice a day now. Has anyone prescribed Neurontin? It didn't help me, but some people do well with it. This is a nerve condition for some of us, and nerves heal S L O W L Y, according to my neurologist, at the rate of about an inch a month. That's why we can't feel any improvement from day to day. Very Important Question: do you feel less burn that you did a year ago? Any progress at all? {This the worst physical thing I've ever had to deal with by far and I've had some harrowing things happen.} <P>My next request of my neurologist may be "please give me morphine". It sounds scary but some people do well on controlled doses. Never in my wildest dreams did I think I would have such a condition that would require these semi-drastic measures for relief. <BR>Keep the faith and keep in contact.

Hi, I am so glad I finally found someone to talk to about this and can understand exactly what I am saying. For so long I felt like a leper not knowing what was happening. yes i do have lidocane which does help alot but I dont like having to have creams on me all the time, I just want to be normal again. yes i have bought those khaki pants but they dont feel any better than sand paper. you know i finally understand the true meaning of what my mom used to say " your a pain where a pill cant reach"anyway I really appreciate your advice and for replying to me. keep in touch.

Hello lady's as I read though your comments I can help but cry. I have been having burning,stabbling pain,redness and just pain for 6 months now. I am 21 and I feel terriable I just want the pain to go away. I am so scared to suffer with this pain for the rest of my life because I am so young. I also find myself asking how this happen to me. I have yet to be diagnosed just misdiagnosed. I know that when I have a few drinks the pain goes away but and soon as I wake up its back. I hate it!!!!! Do yall have ANY advice for me. Thanks

Hi pasttime I really wish I had some good advice for you but I dont. I have been going from dr to dr trying to get some help, I deffinately will let you know anything I find out, belive me I know your pain and it is no fun, its down right torture.I am going to another dr tomorrow, I will let you know if i find anything new.<BR>keep praying.

Thanks Christy its somewhat comforting to know that I am not alone. I started to take this vitamin for my diet B12 B6 I have notice that the pain is less severe but still there. I will keep praying and hoping that some day I will wake up normal.

Hi Pastime,<BR>B 12 and the other B vitamins are a good addition to your diet, according to a neurology website I visit. B 12 is supposed to help heal damaged nerves. The B 12 I take is sublingual methyl B 12, that's supposed to be the best vs. cyano B 12. Methyl B 12 is tougher to get but it's on the Internet for purchase. Keep plugging along. I know how torturous this is -- when my burn level goes up, my mood goes way down.

Well that was a huge disapointent, that doc never herd of vulvadynia and had nothing to offer me accept to say well maybe some day you'll wake up and it will be gone, grrrrrrrrrrr ! i'm tired really tired. guess i'll keep trying. I too take the B vitamins and calcium and see my chiropractor once a month. I have heard it could be related to the back, and I do alot of lifting at work.<BR>if anyone has any advice feel free to write.

The last Gyno I saw said that Vulvodynia is pain in the vulva and they don't know what causes it. Well, Duh!!! As usual, I know more about it than he does. I almost passed out when he put the speculum in there. Since he wasn't willing to try anything besides hormone creams, he's history. I'm waiting awhile before I look for the next Dr. It's so frustrating!!!!

Sunshine,
Instead of going to many different doctors, I would suggest that you seek the help of a vulavr specialist as few regular gynecologist are familiar with teh current treatments for vulvodynia

Ihave found some pants from Land's End that are really comfortable. They are stretchy and sort of like workout pants but they have a little flare and with the right kind of top you can make them work for lots of settings. (I even wore them to church on a really awful burning day)

The few times I've worn "real" pants I've had to use a lot of lidocaine the next few days.

Xtraburden,

Just curious, have you tried estrogen cream????