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CommentWelcome to the Twentysecond Vulvodynia Guestbook.
CommentHi, I am 20 years old and have had vvs for nearly three years now. I am so frustrated and depressed because nothing has worked so far for me. I've been on the low-oxalate diet for a couple months now but I keep messing up and eating the wrong thing. It's so complicated! I am also a former coffee and chocolate addict, so withdrawal has been really tough. What's the use in depriving myself if my pain stays the same? I have spent a lot of my parents' money on doctor visits and useless medications. I want to try biofeedback, but I'm afraid it will be another waste of time. Does anyone know of vulvar vestibulitis specialists in California who happen to be covered by Kaiser? I happen to be poor, so I can't really afford any treatments that aren't covered by my insurance. Also, who is Wendy? I read about her in the 2003 postings and I want to know how she cured herself, and how I can do what she did. I feel so alone and frustrated I'm tempted to opt for surgery so they can cut the painful part out of me! I'm getting desperate. I think it would be really helpful for me to be able to talk to other fellow sufferers and get some advice and support.
CommentHi, I suffer from a specific type of vulvodynia which affects my clitoris! It is called clitorodynia. I know it's rare but it exists. I've had it for many years and thought I had managed to keep it under control until ten days ago! I have a big flare up now which has kept me home from work as I can't get dressed! I have a 2 year old daughter and I'm 6 months pregnant. I'm not psychologically very stable at the moment...I'd like to hear the experience of other women who have vulvodynia and are or have been pregnant. My support group consists of my husband who is wonderful and supportive and my mom who is also. I'm also followed by a doctor and a psychologist but unfortunately no one can make this thing go away. I'm sad and angry and frustrated... I aslo fear for my daughter...what if she ever has this??!! Thanks, Dom
CommentA great book that everyone should get cause its FREEEEE http://candidayeastinfections.com/information.htm No S/h nothing! I ordered some free info from the CAndida Wellness Center a few months back thinking id get a pamphlet, but it came today and it was a book that they put together. Its WONDERFUL! Had my QX test done and posted and have my first therapy this friday and get my herbs and homeopaths soon too that I ordered. I am doing a parasite cleanse which is very important I have found out adn its in the book too that I just got. Parasites and yeast/fungus go hand in hand and I learned that you should never take somehting to boost the immune system until after a parasite cleanse or the parasites could benefit from it. SO I am doing a parasite cleanse then a yeast/fungus detox and then taking a good probiotic to replenish and if you dont get more good guys in there the bad guys come back, and then doing a homeopath for my immune system and cellular function. Plus doing energetic therapy with the QX machine. I had a GREAT 5 days and then ate some Chinese food and within 2 hours was not so good adn still am not and its been 3 days. But I ate it twice. Orange chicken, pork fried rice an egg roll and hot mustard. I had a craving, what can I say! I really wasnt eating strict before that either and still felt great.
CommentMaria Wendy is a friend of mine. Contact me at the above address and I can get you her info.
CommentCandi, Just read about ur tests u had done, sounds pretty impressive it'll be interesting to see how you get on with all those treatments!! I'll look forward to reading your updates. Yes as for any diet I've decided im useless, i crave anything i know i cant eat but I'll try and persevere sugar is soo hard to reduce though the iced buns and choc bars in the shops look far to temptin!!
CommentYou know that commercial where whatever the people eat it sticks to a body part, like tha lady in the pastry shop eating a cinnamon bun and when she turns there is one on each butt cheek? Just think of it like that. The QX can desentize you to your allergies and sensitivities so I am going to ask if it can help us to not crave sweets. I ate some Black Forrest cake last night since I had company over. I am a carb-o-holic and a sugar junkie. Not really craving sweets that much anymore though. Ill keep posting about my therapies. And if the QX doesnt do anything for me then Ill post that too so noone else wastes any money. I just have come to realize that I need a complete lifestyle change. I was on guai for FMS, and have gone off of it. I need my herbs and they blocked my guai so until I get my body detoxed and then replenished with only good things, the guai will have to wait and with any luck my overall better health may help with the FMS pain too and I wont have to go back on guai at all.
CommentI have a success story that may help some of you. I have read here & other places that sometimes the pudental nerve causes the pain some of us are experiencing. My vulvar skin is fine, and I have never experienced the skin splitting. I did have unbearable pain (burning, stabbing) in the vulvar and urethral area and extreme urinary frequency (sometimes every 5 minutes) with bad burning on urinating. I have been to 16 doctors. I do not have a urinary tract infection - been checked multiple times. Have been to 2 PT's who deal exclusively with women who suffer like this - got temporary relief, but the pain always came back. 10 days ago I had a steroid epididural (epidural refers to an area of our spines and is not - contrary to what I thought - exclusively something doctors give to women giving birth.) My pain went away instantly and has not returned. The doctor (a physiatrist) says I had inflamation that was causing the nerves in my lower spine to react inappropriately and caused all the pain. He says one shot may be enough to stop the inflamation (and the pain) or I may have to repeat the procedure. It can be done up to 4 times yearly indefinitely. I asked what the steroid was and he said Kenalog. I feel like he has given me my life back. I wake up smiling every day. Goood luck to all. I hope this info helps some of you.
Commentthere was a post from someone named wendy in july 2003....does anyone still speak with her? Im interested in more info about how she became pain free.
CommentTo Dr. Howard Glazer, who hosts this web site , do you ever read these posts? And if you do, do you have any new information you can give us? Do you read any thing in here that is really bad to do? Thanks!
CommentHas anyone had a baby who has had vulvar vestibulitis? I have been in"remission" for a while, but I am concerned about a flare up after I deliver. FYI- I had vulvar vestibulitis for five years. Acupunture, physical/manual therapy, and dietary changes really worked for me. It took a long time to figure it out, but we finally nailed it!
CommentAmy-what do you mean by dietary changes specifically? The VPF (vulvar pain foundation) has a support system for women who become or are wanting to become pregnant that have or had VV. You can go to their website www.vulvarpainfoundation.org and their phone # is on there, you can call and ask for more info.
CommentWhen they start a new guest book, why can't the host put a note on the bottom of the last one telling us there is another one?
CommentYa'll please go here and have a letter sent ot your senator www.citizens.org Click on Take Action, it only takes about 30 seconds to fill out your info We dont want the FDA to decide which supplements we can and cannot buy!!!!!
CommentFolks...my 17 yr old dtr (virgin/no sex of any kind nor touching) has severe burning in the Skenes gland; no one knows the cause. Urologist gave antibiotics which caused nausea; have read SO much now...and Dr. Solomon's info sounds most plausible. Would appreciate feedback. The only relief she gets is from Uristat and ice pack...but can't believe longterm use is very healthy. We're going to try Low Oxalate eating, plus Cal-citrate, Ox-absorb and perhaps the NAG treatment. Have any of you had burning with just this one tiny gland?
CommentQuestion re: Skenes Gland: My 17 yr old dtr, virgin, no type of sexual encounter, developed burning pain in this one particular gland. Only relief comes from Uristat and ice pack; Urologist gave strong antibiotic which would not 'stay down'. Have read net-info until eyes are falling out. Dr. Solomon's Oxalate treatment sounds most sane for young girl. Is any one out there had THIS particular pain? How did you find relief? It is definitely a burning; makes her cry. Pls. post response in Guestbook. Thanks.
CommentAmy, would you mind sharing your success story with us? Eg. exactly how did acupunture, physical/manual therapy, and dietary changes work for you? What did you do? How long til you noticed a change? I'm sure there are a lot of desperate women here who'd love to hear about it. Thanks!
CommentDear MsMagnolia: I have two daughters 16 and 10 so believe me I know you are hurting seeing her suffer. I've been reading and posting here for a couple of years now because of my wife's problems so I've learned a lot. Antibiotics should only be prescribed and taken if there is proof of an infection. Many of the symptoms written about here have no know cause or treatment so the doctors do what they know how to, they prescribe antibiotics and various creams or ointments. I hope your daughter gets some relief from her pain in the mean time there are some simple things that might help and maybe you've already thought of them but here goes. Do not have here use any soap at all near her vagina or rectum, soaps or body washes are loaded with chemicals and are very irritating. Use only water it will do fine. Even though her pain is in one specific area since there is no definite reason given for it try to do things that would relieve pressure and restrict blood flow, for example no tight fitting underwear or clothing. Have her wear cotton underwear not synthetics they don't breathe as well. Many women here believe their pain could be associated with nerve impingement. Has she suffered any trauma to her groin? think back maybe it wasn't recently but is affecting her now. If so there are therapists who treat this nerve entrapement. Try to stay strong this could be a long and difficult road. I'll pray for you both. Frank.
CommentMsMAgnolia Also sugar is a no no for us in pain. I have the burning in the Skenes gland too. It didn't start out that way, but has been like that for months now. Also has her urine pH b een checked? The burning is worse of we are too acidic. Eating mostly low ox foods plus LOW carbs and no sugar OR CAFFEINE helps me. I find that high oxalate foods dont really bother me. When I eat sugar I am in more pain. Have her stay away from vitamin C. Dr. Solomons said no more than 250mg a day of it, I dont take any at all, plus multi vitamins are so full of chemical crap that I wont take one of those either. My herbalist told me to take Spirulina. She gave me a wonderful handout on it and its full of all the vitamins and minerals and fatty acids we need, plus a ton of other things. It is however an algae so make sure there are no allergies to algae there. They arent as strong as a multi vitamin, but we should get most of our vitamins from our food anyways. Plus Spirulina is all natural, no additives or chemicals which can also bother us. It also has all the B vitamins which most people lack. We need that especially for our inflammed nerves. I feel for your daughter especially since she is so young and has not had a relationship yet. Have you read up on fibormyalia yet? MAybe go to www.fibromyalgiatreatment.com and read over some of the symotoms of FMS. Things that people with FMS feel are normal to them so they dont know any different until its too late. Phosphates can do the same thing as the oxalates and cause irritation. ITs worth checking into. Ive had FMS for as long as I can remember now, but when I Was your daughters age, my aches and TMJ and lack of energy was just me growing up LOL
CommentI was diagnosed with LS in 1989. I had 3 laser surgeries to get rid of it from 89 to 91. The doctor also said I had vulvodynia. Now I am having specific problems for about the last 5 years and no doctor seems to be able to help. The left side of the vulva wont heal and it's been 14 years. It is still red, raw and painful. I was told I had too much laser surgery. I am considering going to a burn unit of U of M. I am at my wits end. Where can I seek advice? I think I may have multiple problems. I really need a doctor who knows what they are treating once and for all that will help me recover. I will travel anywhere. I thank you.
CommentJ Lynn- One of the Yahoo groups is specifically for LS I dont know the exact name, but you can go to Yahoo.com and click on GROUPS and there should be a search you can do there. Type in the subject. I found a few VV groups that way. Maybe someone there can help you find a doctor specifically for LS.
CommentI would love to here more from Amy the lady who wrote about acupuncture helping her because that is something i am very interested in trying. Amy if your around please tell us more!!
CommentHi everyone, I was reading previous postings and I read that the steroid creams can make VVS problem worse. I did stop the cream for a few days because I thought I was getting worse, then, started it again, and thought it was helping, but now I am back to the same. So I am stopping for good, Not sure what to do?. My Doc. appt was for 4/12, but they had to reschedule to 4/22. So now I need to wait longer. I just started taking the calcium citrate, still need to get the other vitamins and do better with the diet. I am doing good avoiding sugar and that helps a little. I know it is not helping that my job is stressful, my daughter is 3, as cute as can be, but does not sleep well, so I need caffeine to wake up (or at least think I do), felt like I needed to drink even though everyone says to avoid alcohol, despite everything, I wanted to try and have sex anyway, but my husband did not want to. It has been a long time. I know that he was trying to be nice because he knows I am not better, but I was willing to try. I try to talk to my friends about my problem, they try, but they do not understand. So sometimes I just cry. As you all well know with this problem you always know it is there, can not get away from it, and not sure how long it will take to get better. I am not a control freak, but there is no control over your body, until you get it under control?... I guess I should not be to upset, my pain is mostly an irritation or ache, sometimes a stab, with the exception of sex or using a tampon, I am just uncomfortable and can sort of deal. Form what I see it sounds like some people have it a lot worse; my fear is the worst is coming. Believe it or not I am trying to stay positive and I am usually a very optimistic person. I will have better things to say next time!!! Candi I really appreciate all of the info you post. I do not always have a lot of time and reading your info it really helps. You should become a Doc or Physiatrist, you have read so much you probably know as much as the Doc?s. In reading recent posting Wendy?s name was mentioned a few times, which guest book did she update the info that made her better. I have to beat this and will!!!!!!!!!!!!!!!!!!
Commentnewly diagnosed frustrated and confused but find solace coming to sites such as these and knowing I'm not alone and that there is some progress being made on treatments if not cures. I would like to have a handout explaining vulvodynia to all the drs. who saw me before I figured out on my own from reading and researching and went to a dr who specializes in this syndrome. I'm feeling better but feel hormones and calcium are not going to "cure" me. biofeedback sounds promising.
CommentWendy only posted in the last guestbook She was never a member here, she just came across this site one day She did the calcium citrate with magnesium before bed, low oxalates, no sugar, low carbs, Grapefruit seed extract (liquid) and Olive Leaf (caps) She also uses muscle testing so she wont use or eat anything unless she tests positive on it.
CommentCarolynn - I try my very best to be positive too, but i still have my down days, i came home from work yesterday and cried all evening and managed to wake up this morning and cry too, altho i dont experience excruciating pain all the time, only during sex, i find that just the constant chronic burning pain that never goes really gets too me, its just very tiring and can really get u down, its the fact it just never stops, there is never a time when u can breath relief and just experience the absence of it. I feel alot more positive this morning after my good crying session, i think we all need to cry sometimes to vent are anger for having this problem but it is so important to stay positive too. It is a very difficult subject to approach with anyone and i find that hard too, if ur neighbor or somebody else asks u how u are u just have to say yeh im fine, but inside u want to tell them that ur not fine u are constantly in pain!! if it was chronic pain in the back or leg then it is easy to mention and people can sympathise but with this it is different. I do worry that mine will get worse too but i have realised with help from reading other peoples posts that u cant dwell on it, u have to feel lucky that its not worse and u have to get on with findin a way to get better even if the options take time, dont ever give up and fight it til it ends.
CommentThis is my first entry, but i have been reading and following lots of tips and thoughts to fight this awful thing that we all have. I'm writing to tell you all, that as of Tuesday of this week (April 6th, three days ago), i've been taking Calcium Citrate, fluoxitine, daily vitamins, chromium picolinate, iron, acidophillus, and eating yogurt and only eliminitaing the list of high oxolate foods from my diet and i am already feeling better...maybe it's too soon to be excited. My husband and I have had successful, painless intercourse for the first time last night in over 6 months!!! I can't tell you how happy I am today, and I couldn't wait to get to work so I can post this message, hopefully giving you all some hope. Everyone's body is different and we all have different levels of severity to this problem. BUT, I believe there is hope. AND if i continue to feel better, i am going to cancel the surgery i had scheduled for April 19th! The surgery is to remove the vestibular glands that swell near the opening of my vagina and make it impossible to have pain-free sex! My only worry is/was if the scars will then hurt later. But like i said, i may cancel the surgery all together if these vitamins and supplements keep working! I pray for you all. I have been through this struggle twice now. Presently, this is the second time. I fought it over two years ago, that time which lasted about 8 months. I became severly depressed and went on fluoxitine. It may have been coincidence, may not have been, but the pain went away and once again i was enjoying pain free sex. Could it be the fluoxitine again that is making me feel better, or is it a combination of the vitamins and supplements? I don't know, and i don't think anyone will ever know, but for now......this works for me!!! Best of luck to you all in finding some sort of healing and/or comfort. I thank God for this website and for all of your comments and suggestions. I couldn't have done it without all of your help! Thank you ladies!!!
CommentMy vulvodynia is due to an entrapped pudendal nerve as a result of vaginal childbirth. I learned how to find help at www.pudendal.info. I'm now under the care of doctors who have helped a lot of people recover. I'm so glad I've finally found the right help!
CommentHey all you beautiful women. so comforting to know you are out here if I get overwhelmed. Which I am. I have had this 2 years, I am sticking to the diets, no sugar, low carbs. But nothing is happening!! I first got signs of this after I had sex with my boyfriend for the first time. Immediate yeast infection. Cleared that one up, sex again, yeast again. I was told by my dr that you cannot get yeast from another person. So I kept have sex and kept getting yeast. But then it was different from yeast, It felt like my vulva was swollen to the size of an innertube. All I could do was lie in bed with ice between my legs. It feels to me like it has to do with yeast, since that is what I got everytime we had sex, And now I am a yeast factory, since we are still having sex, Not very often, since most of the time it is unbearable for me. Although when I do, there is a slight amount of blood on the toilet paper, this ever happened to anybody? I just feel that mine is related to my boyfriend pumping me full of yeast every time we make love, It has to be yeast. I used to have pretty good days, but lately I am in agony all the time, Everything hurts. Walking, sitting, driving in the car, EVERYTHING Can anybody help me?????
CommentDonna B- Listen to what your body is telling you! If you feel THAT strongly that your problem is yeast then it probably IS. I had a strong feeling mine was fungal related and i just had the QXCI testing and it confirmed that I have a strong reaction to a fungus. I am now doing a fungal detox and a bacterial detox because I got bitten by a tick adn that actually came up on my test. I am also taking a probiotic and Spirulina plus an enzyme. I am doing homeopathics though for now. They detox and repair and then I will go on to taking the Garden of Life products after all is done if I can afford them. BUT after the fungal and bacterial detox I will be doing a parasite detox and then after that building the immune system. It all goes hand in hand. The parasites surround the fungus and eat is (gross) this all in turn causes a poor digestive system since its filled with all these little creatures and it causes a poor immune system which in turn causes MANY different diseases and conditions. I have learned that you cant take somehitng for your immune system until AFTER the parasite cleanse and fungal cleanse or the bad guys can reap the benefits. ITs all basically detoxing, rebuilding and replenishing. You NEED to eat no sugar and low carbs and minimal fruits (sugar!) but you have to rid the bad guys and replenish the good guys too and my dear your hubby or BF has to do the same. I dont give a darn what doctors say, yeast CAN be passed back adn forth and my dear hunny is being treated as well or its nothing sexual for him. He's lost 20 lbs too! He gets athletes foot so I know hes got a fungal problem. Heres a site that says you CAN pass it. Check out #8 http://www.mercola.com/2004/apr/7/yeast_infections.htm This was posted on my other group since we had been talking about passing candida SO my course of therapy is as follows (and still muscle testing myself to know how many and if I react to it, but when I get homeopathics from my QX lady, she tests on me first so I dont have to :O) ```````````````` NOW: Fungal-Fuge (homeo detox, finish the bottle) Bacterial-Fuge (homeo detox, finish the bottle) Probiotic (test on 3/day) Spirulina (test on 5/day) Propepisa (homeo enzyme, repairs the digestive system, bottle and tastes like Vodka EWWW) `````````````````` NEXT: Ameba-Fuge (parasite detox homeo, bottle) Probiotic Spirulina Propepisa (enzyme homeo, finish out the one bottle) ``````````` Followed by: Probiotic- From now on Spirulina- From now on Systemic enzyme called VitalZyme- From now on (OmegaZyme by Garden of Life is even better but I cant afford it, this one is really great too) Immunopoi (homeo immune builder, and when thats gone I will have to find somehting else for up keep daily, most likely will spend the $ on RM-10 by Garden of Life ```````````````````````` Will be doing a heavy metal detox sometime as well. Maybe a blood cleanse too. But other things first The new 2004 Garden of Life catalog is out, I got it free at my new health food store and it tells all their products and what they are used for and how much to take. Its a really great catalog.
CommentThis is to all of the women who seem depressed about their situation. I was just diagnosed with vulvodynia this morning at the gynecologist. I was nervous in going because I have previously been diagnosed with HPV four years ago, and realize I am at high risk for cervical cancer. So I got into the office, the doctor came in, and poked in prodded (as the nurse practitioner had done last month) and she said well I know what?s wrong! She asked if I would like to know the name of my disorder, of course I said yes.... She said "it?s called vulvodyina" and my immediate response was "My vagina is depressed!?!" She replied, "excuse me?? Of course for all of you Sex in the City fans you might remember Charlotte and her depressed vagina as Carrie called it. Regardless I couldn't stop laughing! All the way home I was calling my girlfriends and sharing my interesting news... as I never thought Sex in the City would hit this close to home! Through all of my research through out the day I do realize the seriousness of our disorder. I know that I am a VVS sufferer, and that this might be a long ride to suppress my problem (especially with my addictions to everything I have to monitor in my diet!) However ladies, keep your heads up! We didn't do anything to "deserve" this disorder. We will all work through the pain together and get our vaginas UNDEPRESSED! Don't be afraid to share the news with those girlfriends close to you! If they are good friends they will help you through this... who knows... one day it may hit them, and then they will be turning to you!
CommentTo Candi: You wrote a great post responding to Donna and of course you are right. I just wanted to add a couple of things.Us guys handle and touch many things during the day. I got into a habit of washing my hands before being intimate with my wife and I think it's a good idea for everyone. I also feel oral hygene is very important, we can pass all sorts of bacteria from the mouth to the vagina. I don't just mean a quick tooth brushing but a good check up of the gums and a regime of daily cleaning and rinsing with something like listerine. I also read that semen can uspet the acidic balance of the vagina, so if you have frequent vaginal intercourse the semen can be a contributing cause of yeast infection. Try either condoms( ones that do not irritate) or practice some other form of sex to see if it helps reduce the occurance of the yeast. I know that as sex with my wife is less frequent so is the yeast infections and urinary tract infections. Best of luck.
CommentNo one seems to want to notice my post - you all want to believe it's what you eat or the supplements you take - the shot I had worked. I'VE BEEN PAIN FEE FOR 3 WEEKS. Listen up - it worked. None of Wendy's bullshhit and Candi's herbalist crap -listen to this - I DON'T HURT ANY MORE - READ MY POST!!!!!!!!
CommentRoberta - Many people here have VV for many different reasons, you are lucky that you have found help for your problem but for others it may not help. Kenalog is a corticosteroid and many of us have found that topical corticosteroids have just made the problem worse so u can imagine why we are all not jumping at the chance to go for your treatment. For the people who suffer the yeast problems i know that topical corticosteroids can make yeast 100 times worse so would it not be the same for some injected into our bodies? There alot of people out there who have gained relief from dietary supplements, changes in diet or herbal remedies as well as prescribed drugs and physical therapy, that just shows u everyone has their own individual case and no one thing can help everyone, god if only it did!! I've had my worst week ever with burning pain so im now seeing whether a change in diet will help, most of us are willing to try many things and some people feel drugs are only a mask of symptoms not a cure, it may or may not be the case but everyone is entitled to there own opinions and should be allowed to decide for themselves. Thank you for your post as it may help others out there but you cant put down other peoples ideas, they are only posting there progress like you and if they can find things to help, then that could help many people too. Candi and Wendy seem wonderful people to me, even if im not taking the exact same approach as either of them, i welcome, read and sometimes try things they have found out, it doesnt matter because we are all fighting the same battle which is too be rid of this pain!!!! i hope u continue to have success but u have to understand no 2 of us r the same in our opinions and what we are suffering and u have to understand that.
CommentROBERTA You need to watch your language AND your attitude here! Other people have had MANY shots and they dont always work! AND YES I HAVE HAD ONE DEAR!!!!!!!!!!!!!!!!!!Obviously it didnt do a bit of good. WENDY is better and has been for 6 years sweetheart so her "bullshit" works just as well as your shots worked for you.So my choice is Wendys "crap" which are herbs and diet. We all dont have a nerve problem. Get over yourself! Not everyone has the same problem you do. If you have read all of the guest books then you would know that.You arent the only one here posting that is well. Stop being such a bitch on here. And my herbalist CRAP is working just fine after only 3 weeks.Not only for me but for my friend on another board who is doing the same thing. I have been able to have sex now after many months,so you can stick THAT up there with that stick you have in your bum! Good for you the injections work, I talk to others on other boards daily who have had MANY over a course of time and they had no luck.After one, I didnt want anymore.And I wasnt even in that much pain at that time. So dont go and tell everyone that running out and having an injection is a 100% cure. ITS NOT! ANd just for the record, there are women who used to post here that have talked to Wendy and they are getting better. WITHOUT shots. Dont bring in your nasty attitude. Its not welcome here. You can share your success here and leave it at that. Plus you should know tht there have been posts on this site as well regarding this and some have been pain free for a little while and though they were cured and then the pain came back so they got another shot and so on and after awhile, they stop working. Maybe that wont happen to you. But you need to read other guest books and other support sites before you go and get all hateful.If you did actual researh and talked to others who have done the same thing, you would know that and wouldnt run on here and say its a cure. I dont see that Wendy or I or anyone else for that matter has been so awful to YOU now have they? But dont attack me without expecting something back. I certainly didnt deserve your attitude, but you definately deserve mine. God put on this earth what we need to heal. Maybe you should go talk to Lauren, the owner of vulvodyniasupport. She is well from the herbal "crap" too. So get off your broomstick and dont go and preach to the choir that your shots are a cure. Only if you have nerve problems. YOUR "bullshit" didn't work for me or many other women. So now why dont you go and read a dictionary and learn a few new words that wont offend the other women here. It's uncalled for. Oh and for the others who know herbal CRAP works, there is a new holistic GYN in my area!!!! :O) Next to my new health food store. YEAH!
CommentFrank- We cant have less sex tho! LOL Wash those hands, brush those teeth and get treated for candida with your lady. My hubby works for a dental lab so he has the cleanest mouth in the world. Hes actually near obsesive compulsive when it comes to his mouth. He has 2 different toothbrushes with different softness and a tongue scraper and the whole nine yards. He carries a toothbruh wth him too. :O) Humans in general should be cleaner. I have seen women (dont hang in the mens room) who have left the bathroom without washing their hands. Thats just gross. I am determined to get my inside just as healthy as my outside. The book Patient Heal Thyself is really great. Jordan Rubin was near death from Crohns disease and is healthy and looking pretty darn good these days. Oh and that is due to herbal "crap" (sorry had to stick that in) Dear Roberta ticked me off for the next few minutes. I'm a Sagittarius, its my God given right to be nasty and I never was on here so for her to be brings out my Sag side. And she well deserves it. ANywho, be cleaner and healthier and feel better! And diet plays a huge role in my pain.
CommentTo Roberta: I don't read and post here to be insulting, I do enough of that elsewhere. There are so many variables and different symptoms associated with Vulvodynia that it is unreasonable for you to assume what worked for you will work for everyone. Obviously you have gotten relief so you feel very strongly but many have tried the same treatment and failed. If the onset of pain, burning, itching, tearing, thinning and any other problems of the vagina was brought about by several different causes then it makes sense to me that it would require different treatments to relieve or reverse the symptoms if possible. You are all in some kind of physical and emotional distress. As a husband I'm emotionally upset for how my wife suffers and for myself. I can give her pleasure but at a price, I can be sexual and get pleasure but not without hurting her. I know not all of you can have sex but some of you can to some degree. We have to understand that while some women have been living in pain for years there are those who are just beginning to have pain. I think for this reason it would be kinder and more helpful to show a more positive attitude and open forum. I don't accept everything I read here as great advice but if it giving relief and hope that's a good thing. Happy Easter to those who observe it and best of luck to everyone.
CommentI was wondering if anyone had a good internet source on a low oxalate diet. I wanted to read up on which foods fall into which categories. Thanks!
CommentMichelle, I just ordered Dr. Glazer book and another book, I think it has details on the low ox diet; I wanted more details on it too. I will let you know. In one of the posting above it mentioned acidophilus, when I was incorrectly diagnosed with chronic yeast, I was told to take 3 to 5 a day and I did feel better, not 100%. I stopped taking them, thinking that yeast was not my problem any more. I am going to take them again and maybe along with the other vitamins and diet change, I will be well again. I know the diet has to be low carb; I love bread, beagles, pasta and all that good stuff. Does anyone know if just cutting back would have the same effect? How long does it take to know if it is working? I guess I can try both ways and if cutting it out works, that is what I will do. I know stopping sugar did not take long, after 3 days I felt a difference. The other day I drank Coke and ate rice krispie treats, and Easter chicks and sure enough it made it worse. So I know to AVOID sugar and that helps for me!
CommentMICHELLE This is the best resource online that I could find for the low ox diet http://www.branwen.com/rowan/oxalate.htm The vulvar pain foundation has a cookbook too!!!! Go to their website www.vulvarpainfoundation.org and you can print out an order form. They were coming out with a second cookbook as well but I havent renewed my membership and dont know if it came out already. It is $40 a year for a membership (you dont need to be a member to get the cookbooks) and with the membership you get newsletters that give updated info on new foods that are tested. It is really worth is. CAROLYNN_ You should stay away from sugar and those yummy bagels and breads for about 3 months at least while you get your yeast under control. Wendy (who is pain free I might add) can now indulge in those bad treats and eats sinful sweet things, but it took awhile to get to that point, At first she would get flares but then after awhile she doesnt get flares from the bad things. She doesnt eat that stuf all the time everyday, but on Thanksgiving of last year she told me what she ate and I would have been sitting in fire if I ate all that yummy badness. I fel better when I dont eat all of that too, but its so hard not to! The past 2 days I ate so much candy that I am paying today. And last week I was able to have intercourse. So food does play a role in alot of us. Sugar s abd bad bad for everyone. Even those who are not in pain like we are. You can do it! My QXCI practitioner and my herbalist say this, WHITE BREAD MAKES YOU DEAD! I said that today when I went grocery shopping. I dont really crave breads or potatoes anymore just sweets. Mainly Reeses PB cups. :O)
CommentThe second Low Ox cookbook is out! http://www.vulvarpainfoundation.org/vpfcookbook.htm I can never get the VP's website to come up when I type it into my bar so I always have to go to google and put in vulvar pain foundation and hit the link Between cookbooks #1 and #2 you will never starve thats for sure!
CommentThis is my first time posting to a guestbook. I was diagnosed with VVS after the delivery of my child 9 months ago. I am significantly better than when I was first (and FINALLY) diagnosed, although I am not 100% pain-free. As I understand from medical literature and from reading reports from other women who have VVS and other forms of vulvodynia, I think I am fortunate to have a comparatively mild case (although I constantly worry that it will become worse, especially with our next child). I mostly have pain on either side of the vaginal opening that occurs with sex (which feels like a raw cut or abrasion is being touched), and for a day or two afterwards (I get redness and some swelling of the vulva and a more generalized irritation). I am able to tolerate tampons, gentle pelvic exams, etc. without pain and I rarely notice anything throughout the day. I thought I would share what has given me partial relief thus far in case it helps anyone else. Before the diagnosis was made, I could not sit comfortably and sex was completely out of the question. I was initially treated with Valisone cream ( a medium potency steroid) in the mornings and Lidocaine 2% jelly at bedtime. I used this for approx 6 weeks, and actually had a lot of relief within the first 4-5 days. Because of the thinning of tissue that can occur with prolonged use of topical steroids, I have weaned myself almost completely off the Valisone. (My gyn says that it can be used 1-3 times per week without risk of tissue damage;however I've read opinions from other doctors who recommend it sparingly, if at all. I use it at most a couple of times a month--if I get REALLY inflamed after sex. I would rather be safe than sorry, because the thinning of the tissue, if it occurs, is irreversible.) I use the lidocaine jelly anywhere from 5-30 minutes before sex, and for me anyway, it has been a Godsend. (So far, my husband says he doesn't notice himself getting numb, but I've read that if this is an issue, you can get a prescription for Lidocaine 4% liquid, apply it to a cotton ball and hold the saturated cotton ball against the painful areas for about 10 minutes prior to having sex) I also take Diflucan 200mg once per week ( I have a long history of documented yeast infections), Calcium citrate twice a day, lactobacillus acidophilus twice a day, Estrace topically at night, and I try to follow a low-medium oxalate diet. I seem to be able to eat small amounts of some foods with a high oxalate content without any increased irritation, other foods like peanuts or beer I can't seem to tolerate at all. One thing that I have been trying over the past couple of weeks is Ibuprofen 600mg after sex--it does seem to help quite a bit with me getting so inflamed afterwards (I read that anti-inflammatory medications are sometimes used in the treatment of interstitial cystitis, a related disorder, but have never read anything about it being used specifically for VVS-I look at it as not harmful and possibly helpful, so why not try it?) I also follow vuIvar hygiene recommendations I found on the Internet--absolutely no soap; rinsing after urination (I'm not really strict about this one); white cotton underwear laundered in Dreft and run twice through the rinse cycle. I also recently ordered The Low Oxalate Cookbook, and the Vulvar Pain Foundation ( who publishes the cookbook) sent me some literature which made for some interesting reading. A copy of their newsletter was very informative as for what treatments are proven to work, what might be helpful, and what to avoid. I am considering having my urine tested by their lab for oxalate content, however the cost is $350, and I was wondering if any one else had done this, and whether or not they felt it was helpful. I also noticed that a couple of people had some improvement with fluoxetine (Prozac). Has anybody had any success with Elavil (generic is amytriptyline)--I see this in the literature a lot? I was also wondering if anyone else has a problem with recurrent yeast infections (documented ones) and what things they might have tried that worked to get rid of them for good. Thanks to everyone who comments in the Guestbooks. I appreciate your insights, all the advice, and most of all the comfort I get from knowing that I am not the only person out there dealing with this chronic, frustrating problem. Stephanie
CommentStephanie-The VPF has 2 cookbooks out now. More food choices. I took Cataflam for awhile convinced that it would help. Its a prescription anti-inflammatory. If you ahve recurrent yeast infections then your husband should realy be treated as well. There has been discussion in my Yahoo group about it being passed back and forth. I wasnt that b ad when I first got VV either and then it got worse over a years time If you got this just after child birth then it may be a nerve related problem. You may want to look into that. pudendal.info has some information on this. However this is not EVERYONES problem. It just makes some sense that it my be worth checking into since you did get this after having your baby. Your muscles also may be weak too which can cause vulvar problems. Are there any VP specialists in your area? You may get worse, you may not. Only time can tell. There are a few ladies here who have had their urine tested. I havent because I didnt have the $350 at the time I wanted to have the test done and now I am in a new direction. My friend who had it done hasnt really been good following the diet and cal cit. so I cant say its helped or not. KimB had it done too and so far I dont know if its helped at all or not. she hasnt posted in awhile. `````````````````````` And for the record, I am not on herbals right now, only Spirulina and I guess you can call it an herbal if you want.Its blue green algae and has all the vitamins and minerals in it. I am on homeopathics and those are not herbs. After my QX testing came back and showed steroid toxicity and it had been over a year since that, I will not use all those harsh drugs again.
CommentI fear my marriage will end in divorce if I don't find a cure for this soon. It's too painful to make love. I have two small children who I'm afraid will grow up with out their father and mother together. I saw a psychic/herbalist who recommended three herbs that I will try as soon as I am done breastfeeding. (The last time and only time we made love in the past year and a half I got pregnant!) My husband wants to see that I'm at least exploring possible cures and the "1% chance" that I may not have vular dynia, even though I've told him from the Internet how much I've read of other women's stories and their endless misdiagnosis and treatments. Please help me.
CommentHeather-Not to be rude, but it doesnt sound like YOU are the one needing help. If sex is the most importnt part of your marriage and your husband would leave you over it then hes not that much of a husband OR a father. I get so angry when women post here in fear that they will lose their husbands. Do marriage vows mean nothing anymore? Dont they say in sickness and in health? But the secnd we get sick and they cant get any they leave? Thank GOD I have someone who is so undersanding and supportive. The stress of fearing he will leave you can make you worse. MAybe invite him to read posts with you. Take him to see your GYN with you too. Let your doctor explain to him what is wrong with you. Shame on men who are not understanding to our pain and our needs. Do they think WE like not being able to have sex? I miss sex just as much as your husband probably does, but it the roles were reversed and HE couldnt have sex would you leave HIM? I doubt it. Maybe give him THAT scenario. Ask him how he would feel if he was in pain and if you were making him research all the time and if you made HIM fear losing YOU. We should not have to be afraid of losing a man. And if they leave then they were never really in love with us in the first place adn who wants to be with a man tht we know doesnt really love us? If he would leave you over this then hes not the right husband, father or role model for your family. If he could walk out over sex then maybe your children are better off without him. That would just show your son that its ok to walk out on a woman if she gets sick, or hurt and it will show your daughter that women who have physical problems arent worth anything. YOU be the role model, and the nurturer. Sex is not love adn sex is not a marriage, its just a benefit. The sooner men start to realize that the better. What has to happen? Does every woman on earth need to come down with VV for men to realize we are more than just a vagina? What are the things you are planning to try? Dont do anything that may make you worse.
CommentTo Heather: Candi has given her thoughts and I would like to give mine. With most marriages ending in divorce we can assume that marriages in general mostly end in faiulure, not a happy fact but a fact. I am fifty and have always been very observant and I believe that most men live in the moment. I have never been unfaithful but I see the same things in myself and it stinks. Marriage vows are meaningless to those who do not have integrity, values and morals. It kills me to think of guys saying they love their wives in one breath and go and cheat in another but it happens constantly. So most guys are louses let's accept this as fact. Even if you did not have any problems with vulvodynia, were in great shape had every possible thing going for you in life there is still a high probibility that your marriage would end in divorce. Consider what is most important and work from there. In my opinion first and foremost you have to take care of your physical and emotional health. Stop worrying about your children not having their father at home, plenty of kids deal with divorce and grow up just fine. Stop worrying that your husband will cheat or leave you, Candi is right if sex is that important to him then he is not worth your love or tears. Tell him to leave and concentrate on taking care of yourself. We all tend to worry about the "what if" instead of living for the "what is". Please stop making yourself more sick with all this worrying, it will not change anything that is going to happen in your life. Look around you and see how many relationships with great sex fall apart. Yes to me and most men sex is important that is a fact that we need to face. This sex drive pushes us to have relationships and fall in love and it also pushes some of us to do the most hurtful things. Your husband will do what he will do you can't change that. Now are you ready to do what you must to take care of the most important person in your life? Look in the mirror, you did not ask for this and you do not deserve it. get strong, get happy that you can share your love with your children and folks who care about you. Best of luck.
CommentHeather- have you tried getting really drunk and then having sex? Someone suggested it in one of the old guests books. I tried it and it worked. Hubby, who is a great and understanding guy, was as happy as can be. But he's still a guy! Have you considered other ways to please him? Oral sex comes to mind. Good luck!
Commentheather beware of following the above advice because alcohol can definately make pain worse for some of us ladies. besides that it doesnt make the pain go away and who wants to get drunk everytime they want to have sex because that can lead to alcoholism. bad advice there.
CommentI'm sorry I even wrote a post to Heather after reading the insanity about getting drunk. Bad idea, especially when you have health concerns and children to care for. I've read other posts in the past that suggest anal sex but tha's not a good idea either. There is nothing wrong with being thoughtful of your lover but let's face it you have a problem and now is the time for him to be thoughful of you. I hope that whoever wrote the post suggesting getting drunk was either kidding or seeking help, it was very bad advice.
CommentTerrible advise Most of us can't tolerate alcohol. It causes flares!! You start drinking so you can have sex when your man wants to and then you are drinking all the time and that leads to addiction blah blah blah not to mention, that don't most of us have worse pain AFTER sex? Well then you have THAT to look forward to when the effects from the alcohol wear off. Well, lets take another drink to numb THAT...get the picture? Plu the alcohol is causing more pain. BAD suggestion. Try some 5% COMPOUNDED lidocaine OINTMENT. Trust me on the COMPOUNDED. I used the ointment right from the tube and it was great t first, but then its harsh on the skin and YEOW! Use a base that you know you arent sensitive to. Maybe buy a bottle of GOOD Emu oil and take it to a compounding pharmacy and see if they wil use that as your base. You need a script for lidocaine and it needs to be written for compounded not regular. Beter to be numb than in pain :O) The 2.5% doesnt work worth a crap. I was using the 5% during a nasty flare and i was NUMB. It was a weird feeling, but it wasnt PAIN. :O) Its worth a try.
CommentMy daughter is 24 years of age with a 3 yearold son, for the past 3 years, off and on she gets the itching with continues with swelling and then the skin tears. The doctors don't seem to want to investigate her problem. There is not infection ,yeast, etc. She misses anywhere from 1 to 2 weeks of work each time it happens, even lost a job because of it. I would like to know, how we go about finding a doctor who knows something about this. HELP us please..Thanks
CommentTo Nancy: Start by telling us what state you live in? If no one here can point you to a doctor then there are other sites and organizations that can help. Regarding the itching, has any doctor prescribed an anti-itch ointment? Some of these can offer a little relief. Tell your daughter to stop using any soap, body wash, anything other than water to wash her sensitive areas. Read some of the past guestbooks and you will learn a lot regarding itching, burning, hidden yeast problems and some of the things women do to get temporary relief. Be patient, even the so called experts don't have all the answers.
CommentI think Frank B. and Candi should go into business together, or possibly start their own website!!
CommentCandi--How is that new treatment you have going for your, does it seem to be helping yet? Have you or anyone else ever tried Ox-absorb? I just ordered some b/c the calcium citrate doesn't seem to make a difference by itself. Its so hard to be patient and wait months to see if the low ox diet will work. I've been on it for almost 4 months and I am getting discouraged. I know it takes time but it seems like I might have noticed a something by now.
CommentTo Roz: You're right. There have been times over the last three years when I have written many posts or none at all. Seems that lately I've written more than my share and as a guy it looks really out of place. I sometimes need a wake up call so I'll back off for a while. Please take up my slack with the ladies who are new to the site. Don't let their posts go unanswered. Give them some of the good advice we have all read and shared. I could have posted as a woman and probably no one would have been the wiser buy I'm an honest person and a bit of a blabber mouth. Candi is very helpful but she has a life aside from posting here and I don't see many other ladies responding to the posts. I'm retired and although I'm trying to start a small business things haven't picked up yet so once or twice a day I check my stocks, read e-mails and go onto this site. Maybe one day I'll read some really great news here. Alright I'm done for now, bye. I hope you're happy, don't worry about me I'll be alright. Maybe I'll go feed some birds.....
CommentWell I dont know whether to take that as a compliment or not! If it was meant to be nasty then its pretty sad that people dont want advise from people who are making themselves well or have made themselves well. Wendy has been well for years and yet there were people being so nasty to her here that she stopped posting. Which is a shame because there will be those in the future reading here that will want her advise and it seems like when someone wants her info I am the one that is asked yet here am I feeling better than I hve in a long time and now I'm the one who is getting nasty posts directed at me. I think that alot of women here arent really as interrested in getting well as they act like they are. I think some people just like the attention they get from being sick or in pain and if they get well then they wont get that attention anymore. So when someone comes along who is well and has advise they get upset because then that shows there really is hope. Those who have spoken to Wendy are feeling better, myself included, but I guess noone wants to hear positive stories because then they may just have to get of their asses and do somehtng for themselves. Scuse the language I think I'll take Wendys lead and not post here anymore because it doesnt seem like there is anyone here who wants to get well, just complain about their pain for the rest of their lives. I however am feeling much better and am glad for that. And yes Frank, I do have a life aside from here. Ya'll wanna stay in pain then so be it. But I dont and Ill do what it takes to get well. So sad that those of us getting well and who ARE well already, wont be around to help out someone else, but who wants to deal with smartass comments all the time just because someone doesnt believe that taking somehitng other than a pill filled with chemicals or a shot of steroids or this or that, can help. Certainly not me. I had sex last week a few times for the first time in ages, so looks like I'm doing somehitng right, too bad a couple of nasty women on here have managed to tick off the ones who are well adn getting well so we wont be able to help others. You all want to sit here and cry and complain forever instead of taking some advise from those who dnt then so be it. Enjoy your sad little lives. Those of you who ARE interrested in getting well adn what I am doing or what Wendy did, then you can find my e-mail address in the last guestbook For the rest of you, stop your whining and crying. If you dont care enough about yourselves to actually DO somehting about your pain that actually may take a little more work than popping a pill every morning, then quit crying about it. It doesnt work that way.~~~~~~~~ KIMB I have a bottle of Ox-Absorb, but I rarely use it The info I had from Sci-Con said to give it at least 4 months and if you havent seen an improvement then to contact them. they have about 3 different things you can try.Maybe add the Ox-Ab for a month and see if it helps.Then call them, I would do that if you havent felt even a bit of relief by now. They were vague in the info as to the other things they trry.So sorry that its not working for you. I know you have been thru alot and killing yourself to get well and I hope you succeed.Ive read your posts for the last year and a half and you have taken and tried os many things. If you ever need anyhting write me personally. I'm following Wendys lead and leaving here. Funny how its those who never post that have smartass comments to make. Those who never contribute a thing here. FRANK_ I thought you were a little weird at first, LOL. But you're a great man and your wife is lucky and so are your daughters. I hope your girls never have to go thru this. Men need to be educated on our condition too and maybe then they wont run out and leave their wives like so many do. KIMB-I would be curious as to your results on the QXCI machine. If you ever feel the need to have it done let me know your results. Its really not expensive and its really interresting. I am glad I did it and blessed I found out about it. the girl who had it done and posted about it on another site is feeling better too. We arnt well, but getting there. It takes time. They say 2 months for every year you have had this. GOOD LUCK! Peace out!
CommentI had a vestibulectomy nine weeks and can?t believe life can be so great ? pain free. I suffer varying degrees for over 15 years. Only being diagnosed a year ago. In the last years I have tried all the standard treatments to avail. Even if it seems drastic don?t write off the surgery but make sure your physician is qualified and experienced. I absolutely love my Doc he has given me (and my family) a life back.
CommentI, too, had a vestibulectomy and was cured, but when I posted that info a few guestbooks back, no one wanted to hear it. They all said I made a mistake and the pain would come back. It was my dream to come back to this guestbook and tell you all what worked for me, but everyone was so invested in hating western medicine that they didn't want to believe me. When I saw this last post, I thought I'd try again.
CommentNoone wants to hear what works, havent you figured that out by now? Nothing but negativity here
Commentcandi, i don't know what you reacted to? i didn't see any nasty posts directed to you (apart from roberta's). the person that said you and frank should go into business together was commenting on your kindness and pro-activity as far as i can see. the majority of people on this site are positive and respectful - why let the comments of 1% of contributors get to you so much? who gives a toss what they say? and why fight nastiness with more nastiness anyway? you've contributed an ENORMOUS amount to this site and i for one, would hate to see you go. don't let people get to you so much candi. :)
CommentI wanted to respond to some recent comments regarding management and oversight of the guestbooks. I do try and review the guestbooks for inappropriate postings and delete them but I confess I am less diligent at this than I should be. I would like to request from all those who post on the vulvodynia.com guestbook please notify me directly by email at DrGlazer@att.net of anyinappropriate postings which include postings unrelated to vulvodynia or those overtly promoting or soliciting purchase of products and/or services in an inappropriate manner. Please indicate the guestbook number and date of the posting with any other identifying information so I can quickly locate it and take appropriate action. I would very much appreciate your volunteer efforts in this respect to assist me in managing the guestbooks and keeping them free of inappropriate postings. Thanks to all of you for your continued interest in the www.vulvodynia.com website. Howard I. Glazer Ph.D.
CommentHello, I'm new to this site and new to this syndrome. I've had symptons for about 8 months and got a diagnosis this past Feb. I'm feeling better already on HRT and calcium citrate and have been off tea spinach and a few high oxalate things. I'm postmeno so my situation is different from all you young women. I was wondering if anyone had used chiropractic as a treatment. Shortly before I got this I was visiting a chiro and he informed me that my spine was crooked. I've read that curviture of the spine could contribute. I feel stiff and sore alot and since having this can tell I'm tensing muscles (a life long habit I think) He wanted to put me on vitamins, minerals, massages and repeated visits at that time but I had no money and no insurance. I'm thinking if I had gone with his advice I maybe would not have even developed this condition. Who knows. I have a little nephew who had a very serious condition with his bowels or intestines , not really sure what it was but his mother told me his symptoms were greatly improved by going to the chiropracter. I used to hate the way they always insisted on you coming back again and again but I'm starting to be a believer in their theory that the spine must be decompressed so the nerves can work correctly and it makes sense to me that this could be one of the contributing factors in this mysterious malady. I lean more to the natural remedies and I'm even uncomfortable with the synthetic hrt . I plan to look into bioidentical compounded hormones but know they will be very expensive and money is really an issue as I am single and uninsured and at present unemployed. My life was turned upside down by this whole mess because I didn't have a clue what was going on and neither did the several drs I saw before my diagnosis. Sorry to ramble but I feel very alone and lonely at this point. I guess the point of this whole letter is ...has anyone used chiropractic manipulations for their vsyndroms and has it helped anyone. Hope everyone is having at least a bearable day. Good luck and good health to all you ladies.
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CommentCandi and Frank, please dont leave the guestbook; Frank- i feel we are very lucky there is a man posting on here and i only wish ther were more men posting, its important to hear how it affects u, the partner of a suffer, and it gives me some sort of insight into what is going through my partners head too. Candi - U have been an inspiration to me and i have great interest in reading your posts and how ur getting on, you have provided so much information and everyday i now look for new things to try and ways to get myself better, i was very negative when i first came to this site, but now with thanks to your help and reading other people posts too im fighting everyday to get better. I'm touched that you replied to my first post at the time i was very down and upset and i continue to read your posts past and present to get advice and to just read your experiences. Take care both of you, i always look forward to reading your posts and i hope to hear more of your experiences and advice. You are both very special people and we are all very lucky to have come accross you both.
CommentTo Jenny: Thank you for the kind words. I will keep reading and if there is something more directed towards a man I will respond . I've read so much here and experienced so much through my wife that I sometimes forget that I'm a guy giving advice to a woman and it does look inappropriate. Now if I was a doctor it would be a different story. Candi has been great but there should be other women willing to advise those in need, especially those who are new here.Like I said I'll keep reading but I'll butt out from giving all that info. Thanks again and I'm really happy if anything I said made sense or helped give insite to a guy's thoughts. My best to you. Frank
CommentA vestibulectomy is not the end of the world! It was the beginning of a new one for me. I am only sorry that it took so long for someone to diagnosis and treat. I suffered way to long. I now need to address all the side effects from the years of non-effective treatments (ie. weight gain from inactivity, loss of confidence, relationship rebuilding. etc.)
CommentTo C R where did you have your surgery at? How do they do it? Do you still look the same down there or not and does scar tissue hurt you at all?
CommentRETA - i say give the Chiropractor a try. there are lots of theories that would support a problem with the spine and this condition - the nerves that the run from the spine can and do affect our vulvas. i've spoken to women who think vulvodynia is a complex nerve, muscle and joint imbalance that can manifest itself in lots of different ways.
CommentI've been suffering from vestibulitis for nearly 3 years. I know exactly what caused it: 1st degree vaginal tear. All it took was one moment during sex when I was dry and so began my 4-year nightmare. The tear always reopens and bleeds, despite dozens of creams, alternative medicines, and 2 suturings. Doctors are baffled. I now have vulvar vestibulitis syndrome as a result of the constant trauma (tear re-opening, biopsies, etc.). It became full-blown vestibulitis when I used prescription steriod creams. I got married while 2 years into my suffering and we have never made love as a married couple. To this date our marriage remains unconsummated. I constantly wonder if I need to, like, hire him somebody. We have lots of friends and they all brag about their carefree sex lives. I'm so mad. I hate watching TV or going to the movies because there's always sex in it. Well, I've sought treatment from dozens of doctors to no avail. I can't believe they just shrug their shoulders and tell me they can't do anything. Our pastor at our church has told us that we don't have a real marriage because it's never been consummated. Like that makes me feel good. My pastor even encouraged us to get an annullment (CA law deems marriages voidable due to "physical incapacity"; in other words, unable to have sexual relations). My husband and I have looked into annulling our marriage but it's just so depressing for both of us. We still love each other and we have very high sex drives which makes this all the more frustrating. I feel like I married my brother. I mean we are completely platonic and I'm so depressed about that. Well thanks for listening to my rant. I pray for a cure.
CommentTo the person interested - The Doctor who performed by vestibulectomy is in Houston Texas. Please email me if you directly and I can give more details
CommentTo SANDRA... Please don't get discouraged. I too am in a new marriage and we've only been lucky enough to consumate. Being newleyweds should be great and carefree! Life is not perfect in every way. What matters is that your husband married you for love, and not sex. I think that is truly amazing these days. You and I are both lucky to have such understanding husbands. I know how frustrating it can be at times (all the time!) and how depressing it can be... please try and keep your chin up and be thankful for the wonderful caring man in your life. Why can't all men be like that? Ah.....and then there is FRANK B.! Frank B, I think i can speak for every woman on this site when i say, 'we love you!' and all your support and comments as well as Candi's. And Candi, yes, there is a TON of negativity on this site, but it's only because of the pain and agony most of us are in. I only wish i could say that we all feel as good as you do. But most of us don't. Slowly and surely, though, through your advice and your suggestions and comments, there are some of us out here who are starting to feel some relief from this! All thanks to you, Frank and Wendy. I'm the one who wrote that you and Frank should go into business together. And i wasn't kidding, nor was that a personal bash at you. I'm serious! You should start your own website or something. It seems as though you know alot more about this condition than most of our doctors do! I too have been taking supplements, herbs, and vitamins... i've been feeling great for about a week, and then i got a bladder infection. So i'm back to square one again. But i have a vestibulectomy scheduled for monday April 19th, that i think i'm going to cancel. the doctor will be returning my call tomorrow so i can tell him how the herbs, supplements and vitamins have been working. I'll let him make the decision if he thinks i should cancel or not. i'm just afraid the scars will hurt later. Anyways, Frank and Candi, you both have been a huge help to most on this site and Candi, please don't let the rudeness of those suffering bring you down. Keep in touch!
CommentTo Rozlynn: It was so nice of you to explain your post, thank you. I know I can sometimes be a bit much so while I did not take offense I did think it was a message to cool it. My wife has started reading the site again and said she is going to see the expert here in Ct again, dr. horowitz. Even though we are lucky enough to still be intimate it causes problems. Even if she doesn't get the tearing she has pain from other things. She gets raw and has bad itching with no know reason, and it really gets to her. Last night I was reading the site and read the post by Sandra, I asked my wife to read it and she e-mailed Sandra. She wanted me to read what she wrote but I said just go ahead and speak from your heart. If there is one good thing in this illness it's the fact that you can give emotional comfort and support even if you can't change anything else. I stopped bugging my wife to see other doctors or try other treatments long ago, it was just annoying her. But now she seems ready to investigate further. Aside from the obvious loss of sexual intimacy, pleasure and closeness I'm most disturbed that we can't get an answer. Why do some women develop these symptoms when they haven't even been sexually active? Why was my wife for example fine for so many years and the all of a sudden start to develop this recurrent tear? What is the mystery that prevents all these doctors from looking at either the discharge or skin biopsy samples under a microscope and saying this is what is going on and here is how we resolve it. Always in the back of my mind are my daughters and their future. My wife and I have had many great years without vulvodynia, I don't want my girls to suffer. No woman should have to suffer from all these painful and limiting symptoms, not in these times we live in. Well thanks again for the suppost and kind words, with my wife Rosina's permission I will post anything of interest that happens with her appointment. Maybe she will post herself.
CommentROZ Thanks for that, I took what you said the wrong way. After that other post and some others that were negative and directed at me I figured may as well help only people who want to listen. You said >I only wish i could say that we all feel as good as you do< Funny thing is, most of you actually feel BETTER than i do! But you cant see that because I dont let it get me that down. I have my times. I just get so happy when I feel good enough to have intercourse, even if it is painful, its still a big deal for me. I had intercourse for the FIRST time 2 weeks ago since June of LAST YEAR! I dont hurt just upon touch, i burn all the time. I was about 80% better last april and then in June of last year I got really bad. But I can say that from what I have been doing the past 2 weeks, I feel better than I have in a long time, but nowhere as good as last April. for me to feel even a bit better is a HUGE deal. I know what I am doing is working. I have weird symptoms that noone else seems to have, like peeling sometimes. Ive even been told by other sufferers that I am basically different because of that. But I dont let it get to me. Two weeks is not long enough to make myself well, but I know I am gettig there even if I do still hurt. I hear on here women that can have intercourse weekly and wear pants talk about how they feel so awful, I cant do either on a weekly basis. But when I can and after the huge year long flare I had it gives me hope. There is always someone somewhere that is worse off than you. I tell myself that everyday. I HATE hearing girls talk about how they are having surgery because they cant have intercourse every night. That just makes me so sad. But I guess its easier to try to cut out the pain than make yourself well. Sadly, sometimes they get worse than before. Surgery is a huge gamble. I know that natural things are so much better and I have done all of the other things, not surgery, but everything else, and I am feeling better than I was the past many months. Shoot, my goal is right now to get the way most of you all are, able to have intercourse even once a month. And I DID twice in one week, and then I ate a ton of sugar. Today I am not so red, but the skin still hurts at times.Thats better than yesterday and yesterday was better than the day before. But I know I am getting better. Surgery is not an option. I know it helps some and thats great, but there is a cause behind our pain and surgery wont take that away. I want to heal, not cut out the pain. Because whatever is causing the pain can move to another area after time, and it may be an area that wont be able to be cut out. I know I'm getting better, I can feel it and I can see it. I have a friend who cant have intercourse every night, but she can do it and wear jeans everyday too, I cant do that. Most of you have pain on touch, I have it constantly. Im not where I was last year, but I'm getting there. Naturally. And I dont regret my decision to change my lifestyle. Not only will it help my poor vulva, it will help the rest of my body too and that makes me feel so good! And no thanks on my own website, I have all I can manage with my e-mails everyday and my son and trying to work at home and babysit my little niece daily. No wonder my stress level is high :O) And then I come here and post some success and I get bashed for it becasue I choose to do my thing naturally. I am taking some time away from this site. I need to for myself. My e-mail addy is here but I have to get my mind more focused on other things and I think that will help too. Constantly thinking about the pain also makes the pain worse too ya'll! Garden of Life has a product called FYI (for your inflammation) I am going to be trying it here real soon. Somehtng just keeps leading me back to Jordan Rubins book that I didnt even want to read when it was given to me, I put it in a drawer. But there are things tht kept jumping out at me reminding me I had it. Theres a reason for everything. I feel I got this so that I could make myself well adn then help others. Its just that noone wants to listen unless you are completely well and then there are those who STILL wont listen, like the ones who bashed Wendy. Shes well, we arent, what is there NOT to listen to? a
CommentWhen it comes to V V, all I ever look at on the web now is this guestbook site. All the web sites I have looked at in the past haven't changed in years. Are there any new ones out there worth looking at? Also, it seems to take so long for the low-oxalate diet to start to help. But then I read on here about women who eat one piece of chocolate and can feel the effects an hour later. Can anyone explain how that is? Candi, please stay on. I always look for your inputs. I may not always agree with them, but they have my attention! I feel the same as you. Always in pain. Seldom having sex. Can't wear tight pants. Does this ever just fade away over time? I need hope.
CommentSANDRA--I can't believe your pastor told you that you dont have a real marriage. Doesnt "in SICKNESS and in health" mean anything to him. Sex does not make a marriage, even though we all know it is important. I don't think he would tell someone that had cancer and was too weak or sick, etc to have sex w/their spouse that they didn't have a real marriage because of it. We all feel a loss b/c of this but if your husband is standing by you and supporting you he is a truely good person and spouse. What about all the married people who can have sex and there relationships are horrible with each other-cheating, abuse, etc. Those kind of people do not have a real marriage, you and your husband do. I have not really consumated my marriage either. I have been married 3 1/2 years and have attempted intercourse about 3 times, I don't really count it if there is penetration for less than 5 minutes and no pleasure for me b/c of the pain. There was one time a few months ago that my husband and I had sex for about 10 minutes. I don't dwell on the fact that we havn't really consumated our marriage, I keep trying to look into the future and think about when I do get better we will never ever take sex for granted, like so many people do.
CommentJeanne- It CAN go away. I know it can and I have faith that it does because I have woken up about 4 times in the past year and a half with no pain or redness whatsoever and it stayed gone each time for 24 hours then came right back. Its just finding out what is causing it Today is a GREAT day for me. Barely red and tho sensitive and some burning, its still better than other days. I have increased my fungal detox. The directions say 10 drops 3 times a day or 5 drops every 30 minutes for chronic problems, so I am doing 5 drops every hour or a few days. My QX results showed that the fungus was a huge problem. I remember sitting here crying my eyes out from the pain in the beginning and it wasnt even that bad now that I look back. It was at the time, but then it got much worse and now I sy, well if I could get back to even how I was in the beginning I'd be happy LOL See, theres always somehitng worse :O) I just try to be positive and when I cant, I tell myself that there is someone out there with somehting worse than us. Some woman may have vulvar cancer and it may have spread and not only does she not have intercourse with her husband, she will probably pass on and leave him and her kids of she has some. Theres always somehtng worse. Tai chi has helped relieve me of my stress too and its not hard ot do and I can even do it at home in a skirt of I hurt too bad to wear track pants and noone will care because they cant see me and the moves are soooo easy. I find walking more painful than them! :O) I'd be happy if I could feel everyday like I do right now even. I'd rather be 100% or even 80%. but After some of the worst pain I have felt recently, this is not so bad at all. I still think that the nerves are involved. Not the pudendal nerve for ME personally, but I think that after so much inflammation of the vulva for so long that the nerves become inflammed too adn I am trying to find somehting natural to help relieve them. I am going ot try this stuff, yep, its herbal :O) http://www.beyondprobiotics.net/fyi.htm I used a prescription anti-inflammatory and it didnt work I cant remember the name. Oh, it was Cataflam
CommentHi: To those who have had vestibulectomy, can you tell us what kind of vulvar problem you had? Contact pain only or pain all the time. I had a vestibulectomy in September and--as far as cosmetic concerns--I look exactly the same down there. I'm about to have an additional excision because my doc didn't cut enough and I still have pain. But I'm encouraged. The area he cut is now pain-free. Good luck to all! Lia
CommentMy vestibulectomy was for vulvar vestibulitis (pain on contact). I was a primary. I did not have the glands removed, just the vestibular skin distal to the hymenal ring. It was the best decision I've ever made.
CommentMy vestibulectomy was for constant pain and on contact. I also did not have the glands removed. I had learned to live with so much pain that I couldn?t even sleep thru the night. Since surgery I have been pain free. I was curious as to what a primary is?
CommentThanks to the women who responded about their surgeries. "Primary vestibulitis" refers to pain whose onset coincides with first intercourse or first tampon use. Secondary refers to people (like me) who used tampons and had intercourse without pain for some time before vulvar trouble hit. I was 32. My pain is constant. Some docs say surgery only works for contact-only pain. My doc said that isn't necessarily true; it depends on where your pain is. I'm encouraged to hear a positive surgery outcome from a pain-all-the-time girl like me! My pain is limited to a very small area, but even sitting sets it off. Thanks for sharing your info with us! Lia
CommentLia, I have secondary also. But my pain goes from the harts line all the way down, but the outer edges of the labia arent bothered. Its funny to see, I have this big red oval on my vulva LOL My pain started a few months before my 30th b-day. Seems like so many with secondary who I have talked to started around the same age. Think I'll have ot have hormones checked soon, just in case theres somehitng going on there. I am feeling so much better tho doing my detoxes. Today is anotehr good day so far. But the day just started :O) How did your VV come on? I went to bed perfectly normal and woke up swollen and red and SWORE I had a yeast infection without the itching and discharge. My irritation began just belie the clitoris at the 12 o clock position. It felt like a cut there and that was the night I went to sleep somewhat normal. Woke up in pain. The day before that there was not even pain at the 12 pos.
CommentHello everyone. Thanks for being here. All my life I had Yeast Infections and at times urinary tract infections. I realized that I needed to make a change in the products I used, such as laundry detergents, etc. Just when I thought the problem was solved...and I started the change of life..... I started to have extremely painful sex...burning...like it's on fire!! My partner and I have always enjoyed a good sexual relationship, now I don't want him to come near me! I don't know what will happen between us. My doctor has just diagnosed my problem and I'm on Cipro and Elavil 10 mg. I will post again in 1 month to let you know how things are going. God Bless and lets pray for a cure!
CommentI am pleased to have found this site. I am from England and I suffer with this (it drives me nuts). I have MS and doctors think it is related to my MS. I have had recurrent yeast infections but no other vaginal infection. I have interstitial cystitis and irritable bowel. I am currently taking Amitryplitine 100mg per night and 2400mg of Gabapentin it seems to take the edge off it but I find it gets worse when I have my menstrual cycle.
CommentOK Ladies I need your help on this one. I just went and picked up an insanely expensive medication called Aldara. Its normally prescribed for genital warts. I need to know if anyone has had any bit of sucess with this medication before i put it on my body. I know I haven't read much about this being used to treat our disorder.... I just wanted to know if anyone else's doctor might be on the same drugs as mine (That comment is not literal). Has anyone used this??? PS. This medication seems to eat away at the nerves.... when last month they perscribed Estrace... which is a cell strengthener. HELP!!!!!!
CommentHello all. I have cancelled my vestibulectomy surgery scheduled for monday the 19th. Since i've been following Candi's advice with the herbs, i have been feeling better, almost 80% for about three weeks now. Sex with my husband is tolerable...at least. Sometimes there is pain, and other times, there is no pain. (since i've been taking the herbs and supplements) i think it may have something to do with the bacterial vaginosis infections i keep fighting. maybe once i get rid of that, my vestibule glands will finally stop swelling, causing that painful burning sensation! I just got off the phone with my doctor. I told him about this website and all the helpful hints here. I also told him to suggest it to any of his other patients who are in need of support and help! He suggested that indeed we do cancel the surgery for monday. He also says that particular type of surgery is a 'last resort' type of thing, and that if i am feeling any better, i should cancel or at least postpone the surgery....which i did!!! (thanks to Candi's herbal suggestions) So you see ladies, in some cases, there is hope. Don't fall off the bridge just yet... hang in there and try not to think about the pain. it only makes it worse, for me, at least. If anyone is interested in knowing the herbs and supplements i've been taking, please email me at the address above.
CommentA vestibulectomy is a last resort but I feel that many Doctors wait to long, leaving the patient in pain. I took me over 15 years to be diagnoised! So by the time I found the right physician - All seconday infections had been treated and retreated when they didn't exist. The surgery should only be done if other medical/herbal methods have not worked. Good Luck
CommentSue-Remember Cipro is an antibiotic so you will want to treat for yeast too! I HATE antibiotics! They always start an awful cycle
CommentMichelle-Before using this all over your vulva, test it on a TINY area first and make sure to rub it in all the way so that it doesnt get all over another area. There was a lady who posted on my Yahoo group recently and I wont post her name but I will post the positive area of her post. She doesnt regularly post since shes well now, but here is what she had to write about Aldara :O) ```````````````````````````````````` My gyno excised the two warts which by the way showed mild dysplasia (sp?). I went back several weeks later and she prescribed Aldara - an anti-viral given for HPV. This is when my story starts to look up. It has been two years since being diasnosed with HPV. Since the warts were removed and especially since starting the Aldara, my pain has diminished significantly. The first year, while MUCH improved was sort of touch and go. I would have good weeks and bad weeks though not nearly as bad as before. This past year I have been, I would estimate, 90-95% pain free. While my doctor says I dont' have to keep using the Aldara I do continue to use it once per week for peace of mind. I get colposcopies every year of my vulva. My paps have always been normal. ````````````````````````````````` Hope this helps
CommentRoz-Maybe you can post here for all who may want to stay anonymous to others, what you take daily, what brand, how many, what time of day. If you are cleansing/Detoxing right now, wait until you are finished and tae an immune inhancer like RM-10 by Garden of Life, I am sure that there are many other brands out there that are less expensive. I say wait until AFTER, because my QX lady told me that the bacteria/fungi/parasites (mainly the parasites) can benefit from it. I never knew that! I feel really great still today too :O) Not 80%, but so much better. I have a problem falling off the wagon sometimes and loving the Reeses PB cups and Butterfinger bars. I have been craving sweets insanely this week! I am wondering if its because of the Fungal Detox. Maybe the little bad guys want to stay alive, and that is causing the cravings. When you have a fungal prolem you crave sweets so it makes sense. Maybe I'll write my lady tonight and ask if she knows.
CommentCANDI- good advice...for those who wish to stay anonymous. here is a list of what i take and also a list of my symptoms. bear with me... first off, i have vulvar vestibulitis. the 'vestibule' glands at the opening of my vagina are constantly swollen, causing a burning sensation ALL the time. I have chronic yeast infections, bladder infections, and bacterial vaginosos infections. Obviously there is a problem here. and i also have been treated for these problems when there was no infection until alas....i was diagnosed with VV. So, here is what i take and for what reason. and for the last two to three weeks, i've been feeling 80% and sex is possible. :-) CRANBERRY, herbal supplement. once daily. supposed to maintain healthy urinary tract. dirty and bacteria filled urine can and does irritate my little glands! (just bought this one today...bladder infection!) 500 mg. ULTRA ACIDOPHILUS, dietary supplement. once daily. supposed to bring good bacteria to your vagina to fight off the bad bacteria. 350 mg. IRON, dietary supplement. once daily. to try and control my low blood sugar. CHROMIUM PICOLINATE, dietary supplement. once daily. to try and control my low blood sugar also. (which, i'm not sure if my sugar is outta whack or what, but from reading this site, lots of women believe that sugar is their main source for problems!!) 500 mg. DAILY VITAMIN. i don't think the brand or mg. would matter much. CALCIUM CITRATE, once daily at night. not sure of the mg. this is to control the oxolate build-up in the urine.) GRAPEFRUIT SEED, botanical extract, once daily, this is an anti-fungal, anti-bacterial, anti almost everything! hopefully it will help control the yeast and bacterial vaginosos. this is from WENDY's suggestion. all of these items i take at lunchtime. it's easy for me to remember while here at work. the calcium citrate i take at bedtime. all the items on my list i have learned from this website and through research of my own. CANDI, i'd like to try your fungal detox thing. i think i need it. hope this helps for anyone interested.
CommentHi Ladies, I have posted a few times on this site (last guestbook, i think) and I have been making excellent progress towards being 100% pain-free so wanted to share my story as it might help someone else. Per my old postings, I really thought all my problems were based on hormonal imbalances...too little estrogen to be exact. I had vuvlar swelling and severe sensitivity all the time making daily life a living hell and sex unthinkable. I had very light periods and a continual bacterial infection I cound't get rid of. I also have hypothyroidism. I am only 26 and had this for 3 years. I NEVER had burning. My recent doc, whi has turned into a life saver, did multitudes of tests on me and figured out that I was low on estrogen. I have now been on estrogen (a compounded bioidentical skin creme formula that I use .5 mg 2X a day topically) for 6 months and am about 80% better. The bacterial infections (my doc thinks) are also due to low estrogen as this makes you more prone to infections. He gave me natural antibacterial suppositories, and again, I had a huge relief. We recently put me on progesterone, as i am also low on that. Another thing that really helped was Egyptian Magic, a olive oil/bees wax "creme" that my doc told me to put on the vulvar tissue after urinating. i NEVER could tolerate anything on that area until this and i also noticed within 2 weeks a difference. i tried the low ox diet, didn't work for me. The best was just to eat a "low sugar" diet. I continue to make progeress monthly. I dont have any swelling anymore. The only symptoms are some sensitivity (which i think will calm down as the tissue heals completely) and some redness in the vulva area. Now, I can actually insert a finger into my vagina without any pain! How pathetic is that that that is big news! :) But it just shows me I am on my way to getting 100% better. Hope some of these tips might help someone! I know that hormones is not the answer for everyone, but it may be for some. Unbalanced hormones (especially low estrogen) cause a cascade of problems (such as chronica vaginal infections) that you might not realize are related to the hormone imbalance. I truly believe that there is an answer out there for all of us. It took me 3 years, but I didnt give up and let doctors label me as "uncurabe" and I found my answer! Julie
CommentROZ-Did you know that chronic candida can cause you to be low in Iron? Su told me that when we spoke over the phone. Also the fungal detox I am doing is homeopathic. Its by a company called Dr. Recommends and it's called Fungi-Fuge. I think after it I may do the one by Garden of Life too just to be completely certain its gone before I go for my next QXCI therapy. LOL JULIE- Only we could be happy that you can get a finger in your vagina LOL I never in life imagined I'd be happy about somehitng like that. I never gave my vulva or vagina a second thought except when I was menstruating and was cursing that I even HAD a vagina at the moment LOL Thats such GREAT news. I am going to have my hormones checked soon, just in case. Its the ONLY thing that hasnt been checked for so far! I have been off my BC for 4 months now, or maybe 5, I dont remember so it will be all my natural hormones. That sensitivity is so annoying isnt it? I can be perfectly fine here and there as far as redness and swelling and burning, yet my skin will be sensitive. ITs hard ot explain that feeling, because its not burning, but if anyhting touches it its annoying as heck! Good luck, looks like you are on your way! :O)
CommentTo Candi: When my wife had her hormone levels checked the endocrinologist took blood and also swabbed her vagina. He said that way they could not only check for estrogen levels in the blood but also at the cell level of the vagina. I asked if saliva hormone tests were accurate and he said no. When we went back he said everything was normal. He also said that if she was getting a somewhat normal period that was an indication everything was normal. I didn't push to have a second round of tests by another doctor but I just didn't believe the guy. He was about a hundred years old and was more concerned what the estrace was doing to me than what was happening to my wife. I think they tested for estrogen, progesterone(spelling) and testosterone. I know when all this began and even now stress is a factor. I remember reading somewhere that stress can deplete the endocrine glands which make our hormones, don't know if that's true but if it is then women with vulvodynia are more stressed and more succeptable to this happening. Any thoughts?
CommentI have to INSIST on having my levels checked because I keep getting turned down and told that I am too young (31) and I get regular periods and my vagina looks perfectly healthy so my hormones HAVE to be fine. I dont believe all that. From all the reading I have done the past week, a weakened immune system can cause hormone imbalance as well. All this was to do with fungus and parasites causing digestive problems and a weakened immune system. This cycle causes a TON of problems. I'm so impatient, detoxing takes WAY too long! LOL
CommentAngela-So I have a flashlight that has these little colored things you can use to change it. They slip over the tip of the flashlight. One of the colors is red. SO if I wanted to see if red light worked before buying this other product could I find out using that first? On the outside only of course. Did you have vaginal pain? I dont so I wouldnt even need to use that IGEA thing inside would I? SOunds interesting and as everyone knows, I believe in the weird :O) LOL
CommentThis site is the most encouraging thing I've found. After I got married/began sexual activity, I found out I had this problem, and in retrospect realized I've had it since i was at least 16. After being told by my OB/GYN to seek marriage counseling to resolved unrecognized bitterness i MUST be feeling against my husband, and seeing many doctors who could not diagnoze me, I found University of Michigan doctors who diagnosed me with vestibulodinia without a known cause. In the past year, I have been treated with anitdepressents to control pain, and with 4 month cycles of Diflucan for yeast infestions. (For some reason, that seemed to help, even though I did not have a yeast infection according to test results.) But already, this treatment is fading in its effectiveness. I am moving to VA and trying to find a source for treatment there.
CommentJulie, What is bioidentical cream? Is that the stuff Suzanne Somers talks about? If it is, she swears by it. What is involved in making it?
CommentRenee-After having this for over a year and reading everything I can, I have com eto learn that you can have problems with yeast even if it doesnt show in your cultures. My GYN FINALLY admitted this. Diflucan seemed to help some at first for me too, but those little buggers can become immune.. I had some success wiht 14 days of Nizoral too and I was supposed to go have my liver checked an ddo another 14 days but decided to go homeopathic and detox. Fungi are hard to get rid of. They become resistant to drugs so easily. My GYN wanted me to try Lamisil, but I have no insurance and it was $300 for 30 tabs and I certainly can't afford that! So if VV is from bitterness, then I guess we all must be bitter ol hags LOL Thats just silly.:O)
CommentCould anyone recommend a specialist(s) in vulvar disorders in either Iowa City or in the Chicago area? If you know of someone, I would be grateful if you could email me any information you might have. I'd like to get the opinion of someone who has more expertise in this that a regular gyn--mine just seems to go along with whatever I suggest. Also, thanks to Candi for the advice you gave me when I first wrote. Frank, I REALLY hope you keep contributing. I think having a man's perspective on this is so valuable.
CommentCould anyone recommend a specialist(s) in vulvar disorders in either Iowa City or in the Chicago area? If you know of someone, I would be grateful if you could email me any information you might have. I'd like to get the opinion of someone who has more expertise in this that a regular gyn--mine just seems to go along with whatever I suggest. Also, thanks to Candi for the advice you gave me when I first wrote. Frank, I REALLY hope you keep contributing. I think having a man's perspective on this is so valuable.
CommentKaren-yes, its the stuff susanne somers was talking about. i don;t know how they make it. my suggestion would be to find a doctor that believes in bioidentical hormonal replacement and they will be able to help you. mine is a compounded creme i get through my doctor. hope this helps! one last comment, unfortunatley blood tests are not the end all of knowing if hormones can be part of your problem. every woman will have her own level that is right, and even if you levels fall within the "normal acceptable" scale the lab considers adequate, for you personally, you might still be too low. annoying, isn't it!? for example, i am a very tall girl so weigh more than average, so i need more than someone who weighs less. julie
CommentHey gals, your stories were great news!!! I've had this since 2000 and I definitely see a lo |
