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CommentWelcome all to the 15th vulvodynia guestbook. Thank you for your continued interest and participation in the vulvodynia.com website Howard I. Glazer Ph.D. vulvodynia.com website host
CommentYour website has provided me with some hope. I have been suffering over 2 years and tried every remedy and Dr. in a 2-state area. My next step is surgery.
CommentHas anybody else tried Flexeril? I noticed at the end of the last guestbook somebody mentioning that their doctor gave them that instead of Elavil.
CommentCan someone explain what type of foods have high levels of oxylate in them. I really am not familiar with it. Also does anyone know of an MD or OBGYN who knows a bunch about vulvodynia in the BOSTON area. I just moved and need a new doctor. Thanks for all of your help. I have been on Elavil for a little over a month and have seen some improvement but not much. My OBGYN also took me off birth control but I really don't think it is helping much. Does KY jelly really give relief during intercourse?? I hope all of you are finding some relief. Candice
CommentCandice, I just want to respond to your question about KY Jelly. I was told by my doctors that KY is the worst lubricant a woman could use. I had one doctor tell me that it should be used to oil the chains on a bike. I use Astroglide and it seems to help me. Hope this helps. Good Luck.
Commentcandice: Some people in past nooks have written to use crisco for lube!! I have used summer's eve lube, and it makes me feel absolutely awful! It makes me itchy, so maybe try the astroglide. Also, you can find a nonoxylate diet at branwen.com. It is really good, it gives low, moderate and high foods containing oxylates. Good luck to you and everyone else! have a good day!
CommentYou have to stay off the Pill for at least 6 months up to a year until you can be sure it doesn't work. Many women have found out that a great deal of their problems came from the birth control pill, so you should definately give it an effort. 90% of my problems were gone 6 months after going off it. For birth control, use condoms that does NOT have any nonoxynol added to them. All the sperm-killing stuff can really irritate your vagina and cause a UTI.
Commenti have been suffering with pain and burning in the vulvar region for about one year. at first i thought it was nothing but sex has become painful almost all of the time, although sometimes it is worse than others. i told my doctor about my sensitivity and he said it was probably from tampons. i am grateful for this site because i now see that many othr wormen have the same symptoms. i am still fearful that i may have herpes or something becasue of the pain and itch but i don't think that it is possible. i am seeing my doctor in a few weeks. is there anything specific that i can tell him to make him aware of this condition?
CommentI have read in alot of womens comments that they feel better when they are taken of the Pill. Does that also stand true for Hormone Replacement Therapy. I take Prempro. Can anyone give me any info about the Prempro and vulvodynia?
CommentI would like to know if anyone with pudendal neuralgia has ever tried the sacral nerve modulator/stimulator implant. If so, was it successful? I have tried just about everything and am seriously considering attempting this treatment. Also has anyone else with pudendal neuralgia had any success with other treatments? My heart goes out to all fellow sufferers. We will get better some day.
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CommentHello, I just saw the question asking about the sacral nerve stimulator. I have not tried it, but am seeing a Dr. Jennifer Gunter at the KU Medical Center who is working with a urologist who uses the device on intersticial cystitis patients. There is some thought that the nerve stimulator would be effective for vulvodynia patients. Most of my symptoms occur in the pubic hair with some burning on the labia. I have had little discomfort with the vaginal area. I truly feel my pain is caused by inflamed nerve endings. I can cross my legs tightly and cause the the pain to begin. I am anxious to find out if I may become part of a test group. They can test without having to implant the device with minimal procedures to see if any benefit is there. I will post to this site when I find out more about it. If anyone else out there has had experience with this please let us know. Thanks
CommentThis is my first entry in the guestbook. I'd like to say thank you to Dr. Glazer for starting this, so that we can communicate with others who are in the same boat. My experience with vulvodynia started in July of 1994 when I was almost 28 years old. Started treatment with over the counter yeast medications and then went on prescription ones, including a variety of creams and salves (some of which made me feel even worse, and none of which helped at all. After seeing two gynecologists who kept trying to treat me for your basic yeast infection, I finally made my way to a dermatologist, who was surprised that the previous doctors had never thought to test me for an "atypical" yeast infection. That was the key word. She tested me for the "atypicals" and found that I had one called "torulopsis glabrata." (Not sure if I've spelled that right.) I was put on a treatment of Nystatin vaginal inserts and boric acid vaginal inserts, and finally was able to eradicate the yeast problem. But, unfortunately, was left with a diagnosis of "vulvodynia." My symptoms include terrible low backaches, gastrointestinal problems, bladder irritation, including my stomach bloating out (feels like a bladder infection coming on, but I test "negative" for that), and your general itching, raw feeling in the vaginal area. That feeling is like "tightness, pulling, pin pricks, raw, irritated. . ." -- those are a few ways I can describe it. I've been on a variety of treatments, most of which haven't helped. I really don't want to mention all the things that I've tried that haven't worked for me, as I wouldn't want to discourage anyone from trying them for themselves. What doesn't work for me may very well be what works for you. So, the first thing I would suggest is to have your doctor test you for an "ATYPICAL" yeast infection. Apparently, that type of yeast (and their are several that are classified as atypical) don't necessarily "grow" immediately in the culture; my doctor had my culture being watched for a week or two. Also, those yeasts are harder to get rid of. It took me several months to finally beat it. Guess they're fairly stubborn. But the Nystatin and the boric acid did it for me. My symptoms are not by any means gone, but definitely much improved. I've done the calcium citrate supplements, without much luck UNTIL I tried a brand called "PharmAssure" that I got at a "GNC" store. It's got calcium citrate malate. That "seems" to help control the bladder pain. I've been taking it for a while and the bladder has felt good. Got slack for several days, and didn't take the calcium supplement (and ate a blueberry muffin, which has lots of oxalates) and, bingo, bladder pain. Have gotten back on the calcium and the bladder is feeling better. (It's hard to know for sure, since all of my symptoms will flair up and down, with no apparent pattern. I've tried documenting what I've eaten everyday, what I've worn, things like that, to try to put some kind of pattern to it, but haven't had much luck. It seems to have a mind of it's own. The other thing that I "think" is helping (as I said about the calcium, I'm not sure -- i guess it could be a coincidence)is accupressure. Got myself a book on accupressure and have been concentrating on working the "problem areas": points for backache, bladder, "female" problems, swelling, and such. The book I got was by Michael Reed Gach. I've not been doing my accupressure recently, and am now in a flair-up, so. . . could be a coincidence or maybe not. Will have to get back into doing my accupressure routine, and see what happens. I wanted to share this information in the hopes that maybe what seems to help me might help someone else. They're a couple things for you to think about. I hope that someday somebody can come up with a cure for this, because it is extremely aggravating. And, I realize that as much pain and discomfort as I have from it, my case must surely be considered "moderate" as compared to some of the others who have written. If we keep sharing information, perhaps some medical research person will finally figure this whole thing out. Let's not give up hope!
CommentDeb, I was wondering, when you had the "atypical" yeast infection, what were were symptoms? Did you have yeast infection symptoms or did it you feel the same as now, just worse? I'm also taking Calcium Citrate supplements - the "Citracal" brand that do work for some people, but don't really work for me. Does the "PharmAssure" brand have vitamin D in it? And my last question deals with the accupressure book. What is the title of the book? It seems like something worth looking into. Thanks for sharing your vulvodynia experience in the guestbook. It gives fellow sufferers things to look into. Amy
CommentI was told about 2 years ago from my gyn that I have vulvodynia. In just changing some habits (no jeans or underwear, hypo allergenic soaps, etc.) I was able to get some control over it. But a week ago it really flared up, very itchy and sore in the 5 to 7 o’clock region. I saw my gyn again, hoping it was an infection she could easily cure with medication. Of course she said it was my vulvodynia again. This time she said it looks more like vulva vestibulitis syndrome (VVS). She said because she put a numbing agent on the area and it worked that there may be some hope that surgery may fix my problem. Has anyone with VVS had surgery and did it work? Or is there anything I should try for now that will relieve my pain. It has been over a week with constant burning and itching? I tried lidocaine, which is only temporary, and it usually made it worse after. Please Help! j9
CommentPersonally, I think that surgery should be the very last option. I have vulva vestibulitis and I'm on the low oxalate diet and calcium citrate pills, I've only been on the pills for a couple of months so I am yet to see if they are working.
CommentMy experience began a year ago when I gave birth to my beautiful baby. I refrained from sexual intercourse for 45 days after recovery. Then the first time I had sexual intercourse with my husband, it became very painful with a burning sensation, and the next day, I was in so much pain, I could not urinate and my legs were hurting. At first I didn't know what this was, all I felt was the burning sensation and how excruating the pain was, its like putting salt on an open cut. I went to quite a few doctors and they told me it was yeast infection. I was prescribed all kinds of creams and tablets, did not work. Finally I went to the OBGYN and I was diagnose as "vulvar vestibulitis" and she said there is no cure. What a thing to hear. I know this is not good for my marriage and my sexual relationship and even to have another baby. What do I do? I was referred to another OBGYN and he prescribed to me an estrogen cream, that is not working and I am still in this burning pain and the removal of the inside skin. I need someone to help me. Does anyone know someone in Toronto, Canada who I be referred to. My problem is still here and needs to be cured. I sympathize with all suffers. Hope we can all be helped.
CommentAmy, Well, regarding the atypical yeast infection: I wasn't one who "normally" got yeast infections; only one I ever had years before was right after a round of antibiotics used to treat a bladder infection. But, when I felt that something was "wrong" in July of 1994, I thought it was a yeast infection because I had more discharge than normal, lots of itching, low backache, stuff like that. The itching was ALOT worse while I had the yeast infection than it is now. Right now, what I have is still some itching and "rawness" that flares up and down (but is NEVER as bad as with the yeast infection). Still have the low backache, and now have the bladder irritation and gastrointestinal problems. But, even all of those problems will flare up and then back down. They never go away completely, but I can definitely tell a difference at times. Just have never been able to figure out what CAUSES the difference. As far as the calcium that I'm taking now, it's called "Calcimate Plus" by "PharmAssure"; it's got calcium citrate malate with magnesium, boron, vitamin D, copper & zinc. I'm pretty sure they make one just called "Calcimate" that's JUST calcium (no extras). I know that I've been on two different versions of the product, because I didn't realize that there was more than one kind, and grabbed a different one one day while shopping. I can use either one though. The accupressure book I bought was by Michael Reed Gach; it's called Acupressure's Potent Points: A Guide to Self-Care for Common Ailments. I've really gotten alot from this book, even for other problems. Hope this answers your questions! Good luck to you! Deb
CommentAmy, Well, regarding the atypical yeast infection: I wasn't one who "normally" got yeast infections; only one I ever had years before was right after a round of antibiotics used to treat a bladder infection. But, when I felt that something was "wrong" in July of 1994, I thought it was a yeast infection because I had more discharge than normal, lots of itching, low backache, stuff like that. The itching was ALOT worse while I had the yeast infection than it is now. Right now, what I have is still some itching and "rawness" that flares up and down (but is NEVER as bad as with the yeast infection). Still have the low backache, and now have the bladder irritation and gastrointestinal problems. But, even all of those problems will flare up and then back down. They never go away completely, but I can definitely tell a difference at times. Just have never been able to figure out what CAUSES the difference. As far as the calcium that I'm taking now, it's called "Calcimate Plus" by "PharmAssure"; it's got calcium citrate malate with magnesium, boron, vitamin D, copper & zinc. I'm pretty sure they make one just called "Calcimate" that's JUST calcium (no extras). I know that I've been on two different versions of the product, because I didn't realize that there was more than one kind, and grabbed a different one one day while shopping. I can use either one though. The accupressure book I bought was by Michael Reed Gach; it's called Acupressure's Potent Points: A Guide to Self-Care for Common Ailments. I've really gotten alot from this book, even for other problems. Hope this answers your questions! Good luck to you! Deb
CommentHello to everyone. It has been a while since I checked in. I've accepted that this condition is not going away, and have been experimenting with ways of minimizing the symptoms. Here's what works for me. Forget cotton panties. I don't wear panties at all, or my symptoms reappear quickly. Instead I wear loose fitting leggings under loose fitting cotton pants. Air circulation seems to be key. Getting sunlight on the affected area, particularly when splits appear, helps a lot. Just keeping clean & dry wasn't enough though, I still felt itchy. So I tried some natural creams. What works best for me is a Calendula,Coneflower (Echinacea) & Comfrey cream. The one I use is from an Oregon company www.eclecticherb.com I have no connection with them, personally or professionally, I just want to pass on this info. One more thing. We ALWAYS use olive oil as a sexual lubricant, even when my "natural juices" are flowing. Thanks to these precautions, I'm able to have vaginal sex once every 24 hours without my symptoms reappearing. Any slack, though, and they're back. Good luck , A.
CommentI was diagnosed with VVS today after 3 years of symptoms and I can only say that I am overjoyed that someone finally found out what was wrong with me. I'm sure the rest of you share my experiences: endless appointments in the stirrups, doctors telling you to switch soaps or (worse!) that you're being a hypochondriac. I'm just relieved it wasn't an undiagnosed STD. My doctor put me on Desoximetasone (topical ointment) and calcium citrate. Has anyone out there had any success with these treatments?
CommentJanine, DO NOT have the surgery! After nine months of excruciating pain, I gave in and had gland removal surgery in July of 1997, after a diagnosis of inflammed vestibular glands. Three weeks later, the pain returned. I found another Ob/Gyn who prescribed estrogen cream, and that has worked wonders for me. However, my current Ob/Gyn doesn't agree with the diagnosis, so I am out of medication. Are there any OTC creams that have worked, herbal or otherwise? I am currently searching for another DR. Anyone have a referral for the Dallas/Ft Worth/ Arlington area? Also, I've noticed that several of us had months of treatment for yeast and bacterial infections. Is this what causes vulvodynia to develop, or was it vulvodynia all along?
CommentIt has been over a year since I have checked the guest book! (Husband and I have moved over seas) I had my surgery a year and a half ago and that released a lot of the tension but my pain is still an every day battle. I am learning to live with it and am taking it day by day. I have been on Elivil a little over a year now. I have been working my way off (was at 150 mg each night) and now I'm down to 25mg every other night for seven days. I am experiencing some bad side effects that are hard to explain since I have begun to wean. Has any one else experienced any with drawal side effects from weaning off Elivil? Thanks for any info. God bless and know he is there no matter what is going on in your life. Lisa
CommentHi everyone. I have been going to my new doctor at OHSU. She is WONDERFUL! Her name is Dr. Goetsch and she reinvented the Volvoplasty surgery so that there is less bleeding, less recovery time (1 to 2 weeks), no dissfiguration, and better results. This surgery is only for individuals who have strictly Vulvar Vestibulitis. I have Vulvar vestibulitis plus some muscle tightening and she says that surgery is an option for me. So I did some research and found an article that describes the surgery that she does. I'll have to find out the internet address so you all can read it. My husband and I are seriously contemplating it. I know I won't be completely cured because I have tenderness in other parts of my vagina but the most painful part will be taken out. It is just an in-office procedure with local anesthetics so it's alot easier than the former surgery. Dr. Goetsch has a huge success rate also. I go in to see her on Nov. 28 to discuss this option. I will keep you guys updated on how it goes. I had a thought the other night. I was wondering how many of you were pads as opposed to tampons. I found that when I started on birth control my periods were alot lighter so I didn't change my pad as often. Around that time I also shaved my pubic hair down there (for my husband). I found that when I got vvs I would itch so bad during my period and I wonder if I am allergic to the Dry Weave material found in most pads. I was thinking that maybe because I had no hair protection and I wasn't changing that often if that might have caused some irritation. So I am growing my hair back and switching to cotton top pads. I'll let you all know if that helps. Sorry this is so long. I hope everyone has more pain free days. By the way Dr. Goetsch is located at Oregon Health and Sciences University.
CommentHeather and Tammi: Thanks so much for answering my questions. I saw the entries about Crisco but I have a hard time believing it won't irritate me. I guess I am just being super careful. Well, I am going to try the diet and i will let all of you know how it helps. I am going back to the Gynecologist in a few weeks and will mention the KY jelly bit. Does anyone know of a good GYN in the BOston area. I just moved and need to find a new docotr. Thanks and good luck to all!
CommentHere is the article on the new form of surgery by Dr. Martha Goetsch, that I was talking about. http://www.vulvarpain.icomm.ca?goetsch_1.html Hope this helps someone!
CommentHere is the article on the new form of surgery by Dr. Martha Goetsch, that I was talking about. http://www.vulvarpain.icomm.ca/goetsch_1.html Hope this helps someone!
CommentSorry I submitted that last one twice. The first internet address goes to the homepage where I found the surgery article. If you click on the Bibliography page you will find tons of articles on our disease so I guess its okay that I typed it in wrong. The second internet address is the actual surgery article. Sorry about the confusion. Have a good day.
CommentTamara, I read the article and it is very interesting, but people should read it carefully. I will insert an excerpt after my comments. The doctor talks about differences between vulvodynia and vestibulitis. The surgery is suited to vestibulitis, but not vulvodynia. Read on: Vulvar vestibulitis is not the same as essential or dyesthetic vulvodynia, a disorder of cutaneous nerves, which is treated with amitriptyline. It is not the same as pudendal neuralgia or reflex sympathetic dystrophy, names offered to clarify vulvodynia or burning vulva. Patients with burning vulva have constant pain and no physical findings and may respond to amitriptyline. Calcium citrate therapy was associated with a cure in one woman who had longstanding constant vulvar pain. I have not seen reports confirming this therapy as efficacious in a larger study. It is imperative to distinguish these entities because surgery seems well suited to treat severe vulvar vestibulitis, whereas it is totally inappropriate in vulvodynia.
CommentI've recently been trying an over-the-counter arthritic pain relief cream that seems to be helping. Although I have vestibulitis, most of my pain centers in a small area on the left side of my labia -- spreads out through the vulvar region on worse days. I'm convinced that this is some kind of nerve pain related to herpes (although some of the medical people I've seen scoff at this.) Anyway, the arthritic pain relief has been helping to minimize the burning. I put a small amount on painful areas on the labia and further back -- not on the vestibular area. (That area gets Estrace, which also helps me.) The one I've tried is Arthritic Pain Rub made by Rite-Aid, but there are others with the same active ingredient,10% Trolamine Salicylate (the same ingredient that's in Aspercreme, which has been around for years.) The Rite Aid brand has Aloe in it, so I started with it. The label says you can use it up to 4 times a day -- I've been using it 2 times and its helping. The cream doesn't burn (like capsaicin) or stink, like some over-the-counter topical pain relievers. The main doctor I'm seeing now for my VVD says it worth a shot and doesn't see any down side to it.
CommentThanks Deb! I thinkI will try switching brands of Calcium Citrate - mine really isn't making a difference, so maybe this other kind will.
CommentS Khan, I don't know of a physician in the Toronto area, but I saw on the NVA webpage, that if you call the NVA they can refer you to a vulvodynia specialist in your area. The web address is www.nva.org. I believe NVA stands for National Vulvodynia Association.
CommentAmy, You're welcome! I hope it helps! I, too, started out with a different brand, but it didn't seem to help at all. This new brand seems to work much better on me. Hope it does for you, too. When you figure out if it helps or not, will you post a note on the guestbook? I'll be anxious to see if you have good luck with it! I'll be thinking good thoughts for you!
CommentIt has been approx. 1 yr. since I have written. I've taken some time to seperate myself since I started seeing my doctor 6 mo. ago. I would just like to share some of my news with the rest of you. I was like many of you and thought that I should just learn to live with it since I had it for about 4 yrs. But, I beg any of you who think this way to see if any of this pertains to you. I like many of you had continuous itching and burning of the vulva, repeated yeast and BV infections, and swollen glands. Physical touch causes me to writh in pain. After having failure with 6 doctors I took a friends advice and decided to see a vulvar specialist in Wisconsin. This is the best decision I've ever made. During my first visit I was diagnosed with the skin disease Lichen Sclerosis (this was the second she saw my vulva). Keep in mind that many doctors looked at this area and not once thought "skin disease". What makes it worse is that I even had a biopsy done about 2 yrs ago saying nothing about it. My Dr. ordered the slides and said that it was completely obvious that I had a disease. She started me on Estrace crm, then added a steroid crm after 6 wks. I can't even beleive how much this has helped. Yes, I've been given many steroid crms, but it was never instructed properly. The theory is that the estrogen receptors in the vulvar are not working properly and this causes the skin to thin. Since the skin is thin it will not absorb the steriod properly. Along with this I was given Paxil to help calm down the nerves (not stop the pain), and I'm on a continuos pill to stop my periods. Periods can irritate this condition. After being on this treatment I went into a follow up and found that my skin was healing significantly.(Bear in mind if you have this condition it will not go away on its own, it only worsen without treatment. Without treatment it can cause skin atrophy, thinning of the skin (which is why many women's vulva's tear), and can cause the vaginal opening to close). No, I am not totally cured. At my f/u appoint. my glands were still very sore. She then did a colposcopy and found that the sclerosis was also in the vagina. Which could be the reason the glands will not go down. I just started a crm to use in the inside to help the disease subside there. In one month I should have the sclerosis under control inside and out, at this time If I still have glandular pain I'm planning on getting my glands out. Sometime with no matter what you do the glands will not return to normal. I have talked to numerous people who have had success with this doctor. She is also so warm, friendly, and understanding. She believes that this is not something a woman has to live with. With a lot of confidance in my doc, and many prayers, I'm planning on being rid of my chronic pain. This is the first time in the long time I have felt this way. Although the skin disease will probably eventually flare up, I know what it is and how to treat it. I figure I have had it for about 3 1/2 yrs. I feel lucky I found out before too much scarring was done. One other thing, my Dr. also feels that if you have this someone else in the family does. She also see's this in a lot of fair-haired, fair-skinned people. After doing some research I found out my aunt on my mother's side has it, and she is the only blue eyed blond in the family. Please take care. Be your own advocate. God Bless.
CommentThere was no choice for the age bracket in which I developed vulvodynia out of the clear blue. Your question should be modified. I was 42.
CommentCandice: I actually went to some doctors in Boston in May. They really helped me out and the pain is very miminal. I am on 4 different medications. They are located in the Boston Univ Medical Center. The number is 617-638-8959. The doctor(s) (they are sisters) names are Dr. berman. If you can not get a hold of them call the directory at The Boston UNiv( you will have to call the directory assistance for that number.. sorry I do not have it) and ask for Irwin Goldstien. He has a seperate office (I beilive) But I know he specializes in the same thing. Also for lubrication, I use Vagisil, whenever I am in pain and majority of the time it goes away. Let me know how everything goes..
CommentHi everybody Has anyone wth VV ever had their estrogen levels tested by blood work? I wonder if people have less than they are supposed to have. No matter what I do I am so dry, raw and irritated. I am hoping to try Estrace soon. Thanks everybody
CommentI have vestubulitis for 12 years this month, but have been symptom free for approximately 3 months!!!!!!!! I rinse with tap water after every urination and apply Crisco solid (a light coating). I also take Calcitrate once a day and glucosamine sulfate once a day. If I skip even one rinse there is return of symptoms within 30 minutes. My labial tissue is getting a little thicker (had thinning from prolonged steroid use). I think this is a slow healing process, but impressive after 12 years of useless teatments. Good luck! Keep trying-stay away from creams and surgery (personal opinion). Lisa
CommentHi Ladies, WOW, I don't know how long ago it's been since I checked the Guestbooks. I put some comments in Books 4 & 5, and now we are up to 15!! I WAS a Vulvodynia sufferer for 2 1/2 years and have been free now for about 2 years. My symptoms started after a course of a tetracycline antibiotic. About 3 weeks after stopping the antibiotic my symptoms started. Except, I had the burning and irritation in my mouth at the same time...a double whammy. I KNOW that was my cause. I would be interested to see how many of you had taken an antibiotic just prior to your symptoms appearing. My Dr told me that an allergic reaction to this medication is that somehow it affects the nerves in moist parts of the body. A number of her patients had got their vulvodynia the same way!!
CommentHi, A doctor has just told me that he believes my Vulvodynia is due to a defect in the gene that stimulates adrenaline production. The insufficient adrenaline can lead to many physical problems such as headaches, chronic fatigue, gastrointestinal problems, urinary/bladder problems, sleep disturbances, anxiety problems.....and vulvodynia. I think he said the insufficient adrenaline interferes with neuro-transmitters? I thought I understood the doctor at the time, but now I'm a little confused. Can anybody give me the laypersons explanation of what adrenaline and neurotransmitters have to do with vulvodynia? If the doctor thought I had insufficient adrenaline, shouldn't he have verified this through some test to determine my adrenaline levels? I was given a prescription for Elavil which, I quess, is supposed to boost my adrenaline production. I would really appreciate any explanation you all could provide. If someone knows of a guestbook entry where this was already explained, I'd appreciate being directed to that, as well. I'm usually a pretty bright person, but I think nervousness clouded my comprehension of the doctor's explanation. Thanks so much to all of you for listening (reading)!
CommentI recently discovered this fantastic web site and have been very interested to read the experiences of all of you. Until now I did not have a name for my condition. I now believe I have vulvar vestibulitis. I have had it for over 6 years, having developed it late in my pregnancy. I have visited numerous doctors who never really believed me and could offer no advice other than various creams which did not help at all. I had given up on finding a solution until I found this site. I was unaware of the range of treatment possibilities and am now enthused about finding one that works for me. I would be interested to hear from any other women who have developed vulvar vestibulitis during pregnancy. My twins were born by caesarean so complications of a vaginal delivery can be ruled out as a cause. Lisa
CommentI will try to keep this brief ( as a sufferer I'm sure you know I could go on forever about vestibulitis!) I was diagnosed with the condition 5 years ago. Here in the UK it does not really seem to be treated very seriously and I have been offered no treatment whatsoever. I have only recently decided to look on the Net for info and was astounded and how many people suffer. I have been following the low oxalate diet for about 4 weeks which is quite hard for me as I'm a bit of a health freak and lived on Fibre and veg!! I have been having psychosexual councelling for 1 year which has helped but my goal is to be able to have intercourse again ( I havent done so for 6 years) I have a wonderful partner who has supported me through this, we have been together for 10 years and would so love a 'normal' sex life. I find it very hard to get aroused but the councelling has helped. I also have accupuncture which has changed my life and has helped me to 'chill out' about sex. I have got an appointment at the hospital next week and would like to have some 'ammunition' to take along. Can anyone offer me any advice on treatment that has been beneficial to them and if anyone has had succesful surgery I would love to hear from them. Any advice would be greatly appreciated. Thank you very much Sally sally.parker@talk21.com
CommentKeryn -I had just finished a massive course of antibiotics for a severe infection before my VVS started three years ago. The antibiotics gave me a yeast infection of monstrous proportions, so I would definitely buy into the theory that the antibiotics messed with my "balance." To All -I am in my twenties, have VVS, and DO NOT have psychosexual problems!!! My husband and I have a completely normal, healthy, enjoyable (except for the VVS) sex life. I firmly believe that VVS is a PHYSICAL problem. If we let people keep telling us that we're just hysterical women and that its all in our heads, we will never find a cure. The concept that all gyn pain can be traced to psychosexual problems is as outdated and erroneous as Freud.
CommentI ladies. I have had Vulvodynia for 15 years now and have never been able to get it under control without medication. I am trying to get pregnant so I had to go off Elivil after 18 months of success. I now have constant flare ups which makes it almost impossible to have sex (or keep my sanity for that matter). Does anyone have any advice. I just started using A&D ointment with some success but I need all the help I can get. I am 35 and running out of time.
CommentFor those of you with Vulvar vestibulitis, I just read an interesting article posted on WebMD titled Does Sex Hurt. http://my.webmd.com/content/article/1687.50227 Check it out. Question, to those that have done biofeedback. How long did you have to go before you felt relief?
CommentCandace, there is a gyn in Boston who is very knowledgeable about vulv. vestibulitis. Her name is Dr. Stewart, and she is located at the Harvard Vanguard Copley Square offices in Boston. Her tel. # is 617-859-5250. She also has offices in Burlington and West Roxbury. She is one of the few doctors out there who is quite familiar with VV, and specializes in treating patients with VV. I have had some success with the different treatments she has prescribed. I highly recommend her, and hope that you, too will find some success. I know the frustration of dealing with VV, as I have suffered from it for approximately eight years. I have more info. to share with all of you, but I will have to come back later to do so. Visiting this site is so helpful to me - reading opinions and experiences with different treatments, references to new research, and the simple fact of knowing other people understand what this is like. Thanks.
CommentTo Lisa M. I'm 26 years old and recently had my estrogen levels tested through blood work. Not only was my estrogen level depressed, all my hormonal levels were low. I'm on topical estrace now and also hormonal replacement therapy. Showing a definite improvement, but still far short of no-symptoms.
CommentI'm just wondering what happened to the posting regarding the new website created by a fellow vulvodynia sufferer? I didn't write down the information and it's no longer included in this guestbook.
CommentInteresting, huh? The obcenity filled post was deleted along with the one that mentioned the new site. I'd like to know the site's address, too. I guess someone doesn't like competition for our pain. How incredibly petty. How incredibly sad. I hope whoever wrote the address will do so again.
Commentwww.vulvodyniasupport.com Lets see if it stays up this time!
CommentPlease all go to the www.vulvodyniasupport.com website and sign in the guest book. Lauren is planning to send that onto Doctors and drug companies to get more exposure.
CommentWe need more and more exposure. www.vulvodyniasupport.com will help with that! I have questions about the use of other antidepressants other than elavil for pain, anyone have any luck? Ilona
CommentYou might want to try Neurontin-It helped me and doesn't have the weight gain effect like Elavil. Good Luck.
CommentTo Ilona regarding other anti-depressants to try: some people that can't use Elavil can handle Nortriptolyne -- it's another tricyclic antidepressant. My gynocologist had me try Zoloft for the pain, but it made me wacko--but she said she's had patients that had better luck with it. Also, regarding the post suggesting Neurontin--just FYI, it's not an anti-depressant, it's an anti-convulsant. (Don't know if that really matters, but thought I'd clarify it.) Neurontin seemed to "take the edge off" the pain for me, but certainly wasn't the answer.
CommentHi to everyone, I just discovered this website and by reading it I am feeling I am not alone. I was just diagnosed with some kind of "rare candida" after two years of pain and suffering. Though they are still giving me the same prescriptions than before. I have been married for 3 years and I want to have children. I am really scared for some reason. Though the numorous doctors I have seen say that it is not going to affect my child, I am still concerned...I would like to know if any of you have been able to have children even having this horrible problem and also if the children were born fine.. This is a great website, now I realized that I am not alone....
CommentDear all, I wrote a message but It was not posted. Anyway, I am not feeling alone any more, it is hard for me to believe that there are so many women with this problem. I was just diagnosed with a rare kind of candida after 2 years of agony and pain. I have gone though so many pills and creams and they have not worked out...Anyway, I have been married for 3 years and I want to get pregnant but I am very scared!! Does any of you have been able to have children during this painful problem and being able to have a normal pregnancy and the children were ok..All the doctors say that I should not be scared but I am still concerned. All messages will be greatly appreciated. Thank you, Mary
CommentJanine, You had asked how long it took for biofeedback to help. For me, I started to feel a difference after about one month, but it took 3-4 months before I felt really good. I was using estrogen cream and Desipramine (a tricyclic anti-depressant - Elivil made me way too sleepy) at the same time, so I don't know if it was the physcial therapy alone or the combination of the three. I still do the exercise and am still taking the Desipramine, and I've continued to feel great - I have had a normal sex life for about 5 months now.
CommentI was recently diagnosed with IC because of frequency and severe urethral burning, but I also have extreme vulvar pain. It is constant and feels like my vulva is engorged and painfully stimulated all the time. The physician said it was just a symptom of IC, but I do not agree. Is there any way to distinguish IC from vulvodynia? Also has anyone been helped by taking Nacetyl glucosomine or 5HTP?
CommentI have had vulvadynia for almost 4 years. I have just recently started having several good days in a row. I take citrical 1x daily (1tab),1NAG (glucosamine), Effexor XR 37.5 mgs (2xdailly) and lorazepam as needed for pain. I have recently started using Estrace cream, but not just externally. My Dr. prescribed me to use 1 applicator full at bedtime and apply it to the labia as needed. I have experienced the best relief since I have begun the Estrace therapy. I now use only 1mg of Estrace internally and apply it externally daily. Hormones seem to be playing a part in this for me. I also adhere to the Low Oxalate Diet, but I have been able to eat a few foods that always caused me pain recently. I hope that this helps someone suffering with this horrible pain.
CommentI have posted in the second guest book, back in June of 1997. I cannot believe how this guest book has expanded. My story is one of success. I had ended up having surgery over 5 years ago. I can remember how painful this disease was for me. The buring pain if forever etched in my mind, but my body no longer feels it. I found help through the Jefferson Center for Women's Specialities in Philadelphia, PA. However, my dear doctor was killed in a car accident this year in May. I almost died myself when I heard the news. From what I understand the practice is still treating women. Dr. Howard Kent was my doctor. I went through years of antidepressents, injections of antivirals, any treatment that was there, I did it. I finally opted for surgery in December of 1994. I'm still pain free until this day. I think a lot of prayer helped to. I'm still a member of the Vulvar Pain Foundation to. It's been over 7 years since I found that organization. The National Vulvar Assocation is another foundation that offers women help to. Both are on the web. If anyone has any questions, please feel free to ask...Justine
CommentHello I need some advice. My partner is suffering from vulvar pain and its putting a real strain on the relationship. She does'nt think it is fair for me to deal with this with her. I just want to help.
CommentMy partner is suffering from allot of the symptoms that I have read here, It hurts me to see what she is going through. Our relationship has become strained and I want to do anything I can to save the relationship. Can somone out there give me some advice. Ken
CommentMy partner is suffering from allot of the symptoms that I have read here, It is putting a real strain on the relationship. Can somone give me advice on how to deal with this. All I want to do is support her. Ken
CommentI have a question for anyone on Elavil. I just started taking 25mg at night on Saturday. Around how long did it take for it to start working (if it works for you)? The first night, I became exhausted after I took the pill but now I don't seem so tired. If anyone has had success on this medication, please let me know. Thanks in advance
CommentLisaM, I was on Elavil for 3 1/2 months. It seemed to help at first (first 4 weeks). It stopped being effective however soon thereafter. I was on 125 mg/day, and developped scarry side effects (uncontrollable twitching). Had to discontinue taking it rather abruptly. I am OK now, but the withdrawal symptoms were very bad. (Horrendous dreams, sleeplessness, diarhea, etc.) I must say that after stopping taking it my pain has not gotten worse. Oddly enough, I even fealt some improvement. I have decided that for me such strong drugs as antidepressants are not a viable treatment option. Best of luck, -Lena
CommentLena Thanks for your Elavil information. I wish you had felt better from it. I don't really notice any change but I just started taking the medication a few days ago. It must help some people since I keep hearing people talk about it.
CommentKen, I am sorry that you both are having to experience what you believe to be vulvodynia. But, she is lucky to have someone that wants to support her through this. I commend you on that. You don't mention if she's already seen her gynecologist yet. If she isn't having any luck with him/her, find a new doctor! (That was my mistake; I just trusted that my doctor knew "everything" so I stuck with him. BIG MISTAKE! I just stayed in alot of pain for longer than was necessary.) If she tests "negative" for other problems that could cause this kind of pain, she needs to be sure she has a doctor who has some experience with treating vulvodynia. Unfortunately, many of the doctors I went to never heard of it. Hopefully, things are changing now, in that regard. She needs to see a doctor who takes her pain seriously and doesn't give her the run around. Also, she should be tested for ATYPICAL yeast (not just the standard strain of candida). That was where I ran into trouble. My doctors kept misdiagnosing me and trying to treat me with the wrong medications. Once I got the right medicine, I was much improved! If you will read through this guestbook, you will see that there are several options to treat vulvodynia. Some may not work for her, but others may help immensely. She should try to educate herself on treatment options, so she'll be able to take that knowledge with her when she goes to the doctor. Your support will also help her tremendously. Vulvodynia is very hard physically AND emotionally on a woman. I wish you both good luck!
CommentI have been a fellow sufferer for about 4 years now. Have tried most every option, with no success. I remember reading about vitamin c and that we should take low doses. But I cannot recall why. Also, did anyone find that birth control pills helped? I am so very discouraged, and so are my physicians. Thanks and best wishes to all, suffering immensely, Tami
CommentTO THE PERSON WHO WROTE TO KEN, You told ken that you were misdiagnosed and you had rare candida. That is exactly what I have and they keep giving me the same treatment. I dont feel any improvement. What did they give you that you say you feel much better? I would like to know. The dixflucan and terazole did not work for me. Could you please give me the treatments you got? I will appreciate your help and fast response. Thank you, Mary.
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CommentTo Tami, I went on Birth control pills to try to regulate hormones, because I felt better when I was pregnant. However, the birth control pills made me worse, much worse. I really don't know why, but thought I would share that information with you. I would be interested in how to ask the doctor about that rare form of yeast and what exactly is the medication for it. Thanks.
CommentMary, You were requesting information on the type of yeast I was dealing with: it was called Torulopsis Glabrata; guess it's a rare form. Anyways, my doctor (who is a dermatologist) put me on Nystatin vaginal inserts and boric acid vaginal inserts. I was on these things for SEVERAL months, but they did manage to beat the yeast! EVENTUALLY! I hope this information is helpful to you. Take care! I wish you good luck! Deborah
CommentHi Deborah, Thanks a lot for this information. Both the Dermatologyst and the gynecologyst keep giving me the same medication and they keep testing me hoping that they will go away... So this is pretty useful. Did you get this "rare kind of yeast again" or you did not get it anymore? Thank you for the quick reply And a piece of advice for Ken: Ken dont put preassure on your partner, just let her know that you still love her no matter what and her problem has a solution. That is the best support you can give her, and have a lot of patience!
CommentMary, You're welcome! I sincerely hope it helps you. After I finished the medicine, my doctor tested me several times for the yeast, but it was GONE! What a relief that was. Truly shows you that doctor's don't always know everything; you've gotta just keep trying till you hit the right one! (First two GYNECOLOGISTS couldn't figure it out! Go figure!) I check the guestbook frequently. Let me know how you make out. I'll be thinking of you. Deborah
CommentThanx for the ecouragment! I have all the patients in the world for my partner. I just hope she can find a good doctor for proper treatment.
CommentI have posted here numerous times over the past 4 years (That's how long I have had this crap) and I thought I would post again. First of all Taryn, I am 23 and have been like this since 19 so I know how you feel to be so young and in so much pain. I have not had sex in 3 years...AT ALL...I have tried almost every treatment out there..including the surgery which I shouldn't have had in the first place because I have constant pain...Well that of coarse didn't help, made me worse with scarring. I am currently trying Guaifenesin because I have FMS/CFS too...Does anyone have any experience with this medicine? Did it help you? I have only heard good things about it helping VV. Also, I wanted to say that I have been with my boyfriend for 4 years now..this all started after the birth control pill, and he is still with me. We are getting married in April even though I am a mess. So there is hope for us to go on in life, even if it seems like we don't want to. I would do anything in the world to be better by my wedding...atleast a little bit better...I don't know what to do next if the Guaifenesin doesn't help me. I can't stand this pain any longer. Anyway..Anyone with info on this med please email me. Hang in there everyone..
CommentSusane, My problems started also after the birth control pill..I never had a problem before (I am 32 now) which pill were you taken and for how long? Thank you,
CommentHey everyone! After having urodynmics testing done and then seeing my specialist a few wks later and having him poke around down there, then have sex a few days later and then my pap test a week after that everthing flared up. Got worse when my period started. After my period was over I've been aplying benadryl cream once a day sometimes twice. Seems to have cleared up for now. I think I find one thing that works, but then a few weeks later there's a flareup. Seems like it depends on what is causing the flareup and what remedy to use. Problem is have to try many different things before stumbling on the right one. Oh well at least now I'm having a few pain free days here and there. That's better then it has been in a long time. Take care! Chris
CommentMary, I was on OrthoCyclen. Two weeks after starting it I got my first yeast infection and the burning never went away..Here I am 4 years later still burning..I was only on the damn thing for 4 months..I guess that was enough to do it's damage. How about you? What kind? I know quite a few women that the birth control pill started their pain. I wish someone would research this more..The doctors just blow it off because my periods are normal...I know there is a connection.
CommentI would appreciate somone explaining the interaction of low oxalate diet and calcium citrate-I've read some material on it but it is not clear to me. Why must the calcium be taken in such large doses (6 a day)? Thank you.
CommentHelp-how do I connect up with the egroup support group-how do I send a message out that all could respond to? Thanks
CommentThank you Shannon and Diana. I am going to research these Drs. and then give them a try I will let you all know how it turns out!
CommentFor over 3 years I have suffered from chronic pains down below. But it was only last week, whilst my local nurse was looking through my medical files, did she find a letter from my old gyn stating I had vulvodynia. The last time I seen this gyn was 2 years ago. Since then I have been silently suffering after he discharged me. But since finding this letter I feel a whole lot better, knowing that I'm not going crazy! Since finding this site I no longer feel alone, I'm not the only one and someone out there is listening. Thank you for making me feel this way - even if no cure is out there, I feel better. xxxxxxxxxx
CommentHi! My partner of 11 years found this website for me. He's more than a little motivated to see me get better! I'm right in there with Taryn. While I feel better that there are other people out there like me, I almost think I need to go on anti-depressants just thinking about the long, drawn-out process to try and determine a cure. Especially if there ISN'T ONE. My problems with pain, burning, itching and skin splitting open and bleeding started after the birth of my daughter six years ago. My OBGYN at the time suggested the pain with intercourse was "in my head." and due to fear of intercourse after a pretty tough vaginal delivery. He suggested seeking counseling and even a glass of wine before sex. I finally got so disgusted with him I tried a new doctor. I live in a small town at Lake Tahoe, Calif. and there are only two OBGYN offices in my area. The new guy is great and has tried many things, including allergy medications, hormone testing, Estrace, etc. Nothing has worked yet. At my last visit I think it finally dawned on him that it could be vulvodynia. I am going back next week to see if he can figure out something new to help. Coincidentally, I was recently diagnosed with panic disorder. It's pretty freaky to me that these could even be remotely related. My symptoms only occur with intercourse- not as constant as many of you- and I almost feel that I'd rather live with it than go through the process of finding a cure. My sister is an OBGYN resident and has been helpful with info., but they only teach so much in school. She says surgery is a last resort and often does not work. Thanks for reading. I'll write back if I learn anything and am very receptive to ideas.
CommentNearly two years ago, when I met my boyfriend, I began to get pain during intercourse. It took months to get worse and it wasnt until six months ago that I formally admitted to myself that something was not right. I went to two doctors, the second LUCKILY realised and refered me to a local specialist. He was an arrogant guy and proud to be a specialist on such a condition, which he believed stemed from over use of Thrush/Candida creams and was the receptors over reacting. He prescribed me a steroid type cream to be applied three times a day. He said I was one of the worse cases hed ever seen. Not having been given a convincing arguement to why that cream should work, and finding it extremely undignified to apply, I stopped using it. This is when I discovered Dr Christiane Northrup's WOMENS BODIES-WOMENS MINDS which looks at modern medicine with a view that our bodies intuatively know what is wrong. It also explains that 80% of our bodys immune cells are mucosal cells such as in the vagina and that the function of these cells are highly influenced by stress hormones. This made me think. Perhaps my body was telling me something that I didnt want to hear. Perhaps my boyfriend and I shouldnt be having sex. So we broke up- a radical step that I wouldnt recommend. EXCEPT that three months ago I was screaming with pain in the doctors chair, and today I calmly said 'oooh it hurts a little bit'. Clearly I was on the mend. Why did I break us up though- couldnt I have just abstained from sex for a while? NO. I knew it was more than coincidence that the condition arose when I met him. In fact I had one beautiful affair in the middle of the relationship with no pain at all. Ive submitted this because it is another possible path to try. And best of all it is drug free and natural.
CommentNearly two years ago, when I met my boyfriend, I began to get pain during intercourse. It took months to get worse and it wasnt until six months ago that I formally admitted to myself that something was not right. I went to two doctors, the second LUCKILY realised and refered me to a local specialist. He was an arrogant guy and proud to be a specialist on such a condition, which he believed stemed from over use of Thrush/Candida creams and was the receptors over reacting. He prescribed me a steroid type cream to be applied three times a day. He said I was one of the worse cases hed ever seen. Not having been given a convincing arguement to why that cream should work, and finding it extremely undignified to apply, I stopped using it. This is when I discovered Dr Christiane Northrup's WOMENS BODIES-WOMENS MINDS which looks at modern medicine with a view that our bodies intuatively know what is wrong. It also explains that 80% of our bodys immune cells are mucosal cells such as in the vagina and that the function of these cells are highly influenced by stress hormones. This made me think. Perhaps my body was telling me something that I didnt want to hear. Perhaps my boyfriend and I shouldnt be having sex. So we broke up- a radical step that I wouldnt recommend. EXCEPT that three months ago I was screaming with pain in the doctors chair, and today I calmly said 'oooh it hurts a little bit'. Clearly I was on the mend. Why did I break us up though- couldnt I have just abstained from sex for a while? NO. I knew it was more than coincidence that the condition arose when I met him. In fact I had one beautiful affair in the middle of the relationship with no pain at all. Ive submitted this because it is another possible path to try. And best of all it is drug free and natural.
CommentI know that many people recommend using no soap on the vulvar region, however I feel better when I do use soap, especially during my period. A really, gentle, mild soap that my obgyn recommended is Aveeno. It's fragrance free and in fact, it's not even a soap at all - its primary ingredient is finely-milled oat flour. If anyone is looking for a gentle, non-irritating soap to use, I recommend Aveeno.
CommentI was wondering how many Vulvodynia sufferers who post on this board are also Perimenopausal or Menopausal. I've been taking Black Cohosh to ease anxiety and it works very well. Lately though, I've had more vulvar burning and I'm wondering if the Black Cohosh is contributing to that burning. So, I've stopped taking it for a few days to see if the burning eases up. Let's hope so b/c meno symptoms are horrendous also. I wish all of us pain-free days. Sue
CommentThis message is for Deborah. I was interested when I read about your atypical yeast infection. I have been suffering from a severe yeast infection for 2 1/2 years now. I've seen over half a dozen different doctors who keep trying the same treatments over and over again even when I tell them that those treatments haven't worked in the past. I'm tired of starting over with new doctors who think they know everything and refuse to listen to me. Luckily, I have found an OB/GYN who will at least listen to me and is willing to try my suggestions. Therefore, I was wanting to know more about the treatment that finally worked for you. I know you said that you used Nystatin vaginal inserts and Boric Acid inserts for several months, but could you be more specific? What was your rotation schedule? How long did you use the Nystatin before switching to the Boric Acid and vice versa? And for how many months did you keep this up? I am desperate to be "normal" again and to get on with my life. Any information would be greatly appreciated.
CommentDear Deborah, This is Mary. I finally went to my dermatologist and she said that if the difluxcan does not work, they are going to give me the boric acid inserts and the nystatin. So I will try the same thing that you did but unfortunately I can not start it until they have the results of the culture again that they did today. Too much burocracy! they want to make sure I dont have it but who else better than me to tell them that I still feel the same way!! So we will see. I hope that this helps me as much as it helps you. Thanks a lot for your response, it has given me hope Mary
CommentHi Suzanne SOrry took me so long to answer you back. The birth control pills I took were two: OVCON-35 LEVLEN The fist one I took it for 7 months and I asked the doctor to change it since I got really depressed and the second one I took it for two months. That was enough to ruin my life. Since then, I have always had problems. Finally they had detected this atypical Yeast after two long years. I also know there is a connection between the birth control pill and this horrible problem.
CommentHi Suzanne SOrry took me so long to answer you back. The birth control pills I took were two: OVCON-35 LEVLEN The fist one I took it for 7 months and I asked the doctor to change it since I got really depressed and the second one I took it for two months. That was enough to ruin my life. Since then, I have always had problems. Finally they had detected this atypical Yeast after two long years. I also know there is a connection between the birth control pill and this horrible problem.
CommentLADIES: I am 22 and have had dyesthetic vulvodynia since August 1998. Like many of you I have no idea what caused this. I was on ortho-tricyclen unitl Jan. of that year. I have never had regular periods. That was my main reason for being on it. Before I was on the pill I would get my period 2 or 3 times a year. Well in the beging of this year I tried a different king of pill to regulate my periods. When I went to the dr.s in Boston, they told me to get off of it cuase my testostrone leverl was very low. So I did and I have been using cream that they have given me. They seemed to help, but I got sick and tyired of it and have not been using them that much. HERE IS SOMETHING ALL OF YOU WANT TO THINK ABOUT.. I recently went to the chiropractor with my husband. The Dr. began to ask me if I had headaches. All I was thinking was I do not want my body cracked liked that. (I kinda of knew the Dr.) He examined me by bending my body all different ways. He told me to bend down to toward my toes, I could not go as far as I should without feeling a little bit of pain. Then I bent my neck a certain way, I had a little bit of pain doing that also. He said it seems like you are having nerve pain...(I thought to myself the pain I deal with everyday is nerve pain) Well he took some xrays for me. I came back the next day to realize that my spine was all messed up and I did have pain in my neck and low back. (I was not going to tell him about my everyday pain cause I figure it was pointless and I only met him a few days ago, but I decided after all the pap smears I had and all the crap I have already dealt with I thought it was worth a try) I told him about it and gave him a paper with information. He then said I do not think that I can help you with that pain. I then got my body cracked for the first time. (It did not hurt). I went back for the next treatment the following day.. He said at the time I have heard about this it was called a different name. This treatment may or may not help. After the second treatment I began to feel relief. All he was doing was correcting my bones in my spine and neck. That was what was causing the nerve pain in those areas. I also believe that is causing my vulvodynia. I had three treaments and I has sex with my husband since the first time I have had this WITHOUT PAIN! I have only had pain about 2 or 3 tines today for a short bit. The pain has not gone away completely and I still have painful sex, but I have only had 4 treatments and to correct my bones I have to go 6 weeks, three times a week. The dr. showed me a diagram of the spine and the nerves and what nerves cause pain in certain areas and what organs are deal with that are of pain. Well low back pain (you do not have to have it all the time or very often) causes menstrual problems and frequent or painful urination (I have both and the dr.'s did not know why..) And this area also deals with the sex organs and the bladder. I have made my conclusion that this has caused my pain and my problems all along. I believe that this will make majority of my pain go away or cure me and hopefully regulate my periods. If any of you have any questions please feel free to email me. If you live in MAine and would like to be reffered to him let me know.
CommentFinally! I've looked everywhere for a place like this! Others that know our pain, frustration, and sometimes - hopelessness. On my good days I know that there has to be a natural way of healing this condition. I was diagnosed with a condition called "squamous vestibular papalmatosis", several months ago. I felt relief and disappointment all rolled up in one. The OB/GYN told me that he had seen this conditon only once before in his practice, and that there really was nothing that could be done. Well, I walked away scared that I would have to live with this pain forever - but became determined that I would find a natural way to heal or at least relieve symptoms. I've had this condition now for over 3 years, with the diagnosis just coming a few months ago. Most doctors, as many have said before me, seem to misdiagnose. I'm like others where there doesn't seem to be a set pattern to when it flares up. Somethings that seem to help so far is : never washing with soap in the genital area, only using tipid water and my hand, not a cloth, rubbing is so irritating; aloe vera gel gives some relief, using nonlatex condoms for intercourse; and when it's really flaring up, I spend several minutes a number of times each day just sitting in a basin of cool water, sometimes adding baking soda to it. I have found so much info that I'm hoping to put into practice here from all of you - thank you! I'll be back soon, what a wonderful way to not feel alone in this condition. One comment to Ken who's partner suffers from this condition - what a wonderful thing you have done. Reaching out to help her and yourself - my husband has been so very supportive also - I think that the best thing that he has done and can continue to do is to keep telling me that we will find something that will help. He tries to keep me thinking positively, when there's hope - you endure. Deb
CommentHello every one again (3rd time i think), I just want ask if there is any one with chroinic skin inflamation and REDNESS and swollen vulva and had no help from biofeedback and steroid cream? thank you for any suggestions all the best to you all
CommentHello every one again (3rd time i think), I just want ask if there is any one with chroinic skin inflamation and REDNESS and swollen vulva and had no help from biofeedback and steroid cream? thank you for any suggestions all the best to you all
CommentMary: I wish you the best of luck! Keep us posted as to how you make out. I finally beat this yeast out of sheer stubbornness: I wasn't going to accept the "we can't find anything wrong with you" response from my other doctors. Don't give up hope! Jennifer: I will go home tonight and try to find all my prescription forms from that round of treatment so that I can give you an idea of how long I was on the boric acid/nystatin combination. I'll write back to you tomorrow - I promise! Deborah
CommentElavil question again, To those of you who found Elavil helpful, around how long did it take for some relief? I started it about 10 days ago and don't know if that is way too soon. Estrace question again My GYN told me that Estrace has only helped her patients that were perimenopausal or post menopausal. However, I noticed from all the web sites that Estrace is being used by people younger than that. If you are in your 20's or 30's and Estrace has worked for you, please let me know! Thanks! LisaM
CommentTo LisaM. I started taking Elavil eight days ago. My doctor told me it would take a month to feel any effect, but that may be because he prescribed a graduated (and low compared to what I'm hearing from others) dosage. I started on just 10mg for the first week, 20mg for this week, and will take 30mg per day thereafter. If you're taking a higher dosage, maybe you'll get relief sooner. I'm hoping to get relief, but avoid side effects with the low dosage. Good Luck to you...hope it works for both of us!
CommentHello! First time contributing; what a relief to find such a helpful website! I'm a relatively short-time sufferer compared to some of you ladies, I'm entering my six month of this condition. If any of you can answer my questions, I'd be most grateful. I have never suffered from a vaginal infection in my life, but I've had two bladder infections in the past nine years. I recognise the pain associated with them. I developed one in May of this year and took Keflex for it. Within 11 days I went from a gal who has regularly used a pantiliner daily because of a healthy amount of discharge to NOTHING AT ALL. This was accompanied by extreme pain and redness in my vulvar area. My family doctor thought it was yeast, tried the meds., no improvement. A culture showed e-coli growth, acourse of Cipro fought the infection but made me terribly ill. The soreness of my vulva continued. Boric acid suppositories made me extremely ill (pelvic pain and nausea). Irregular periods began, as did a return of a *tiny* amount of normal discharge. Came down with another e-coli infection in Sept., GYN. didn't notify me so I went to my family doctor two and a half weeks later for another culture, e-coli was gone! Developed another bladder infection during my period in Oct., went on Macrobid. It cleared up the infection but I'm still suffering form the same pain I've had since May. My new GYN. has taken blood for hormone levels, everything is normal! She has prescribed a creme called Mycolog, have any of you used this creme? I don't want to use it if it will be detrimental. Sex and urination aren't painful for me, I just have this pain in my pelvic area and a burning, itching sensation in my vulva. My main concern is if any of you found your discharge affected by this condition. I believe if I could have my normal discharge return, things would get better for me. Do any of you know of a good doctor in the Southern California (Orange County) area? I think I need to see someone who is experienced in diagnosing these contiditions and who will perform the appropiate tests. Thanks to all, I wish you the very best, Sandee
CommentHi, I have been talking with my doc at the KU Med Center and the subject of Botox injections was mentioned as a possible study to be conducted for our condition. Botox is made from the poison botulism and use in very low, very controlled amounts is used by plastic surgeons to reduce wrinkles. THe poison paralyzes the muscles/nerves and allows the skin to relax. I would recommend gong to www.lycos.com and search botox injections. It should cross reference quite a number of articles. Take a look at article number 5 "Deadly Poison Helps Low Back Pain" and number 24 "The Science Behind Substance P". They are also using botox to give relief to migraine sufferers. I believe there my be potential for us to receive some benefit too. I will be in contact with my doc in the next few weeks and report back anything I find out. If anyone else has heard of this please let us know. I know this is long but it is the first new thing I have heard about that seems to have some science backing it up. I believe we can leave no stone unturned and no ideas not considered. Thanks, Jean
CommentJENNIFER: You were wondering about the boric acid/nystatin treatment my doctor prescribed for me. . . My dermatologist diagnosed me with an atypical yeast called "Torulopsis Glabrata". She presribed for me: Boric Acid vaginal inserts (600 mg) -- one (1) capsule vaginally each morning (she called this prescription into my pharmacy; they special-made the boric acid capsules for me) AND Nystatin vaginal inserts (100,000 U) -- one (1) tablet vaginally at bedtime each night So, I was using these products together: the boric acid in the morning, the nystatin at bedtime. The best I can tell from trying to reconstruct my prescription forms is that I was on the nystatin for about 4 months (it was like 16 weeks) (1 tablet every night). After I finished the nystatin, my doctor had me remain on the boric acid -- I'M NOT SURE, but I THINK it was for another couple of weeks. EXCEPT, IF I REMEMBER CORRECTLY, I then used TWO boric acid capsules a day (one in the morning, and one in the evening). I wish I could be more specific, but this was several years ago, so the memory has faded a bit! (I've been through so many different treatments, I feel like a walking drugstore!) But, I hope this helps you out. Run it by your doctor, and see if he/she thinks this program might work for you. I guess there are SEVERAL different types of "atypical yeasts," so I'm not sure if the nystatin/boric acid will work on all of them, but your doctor should know that. I'm also attaching a couple of web sites with reference info about boric acid. I guess that you can make the boric acid capsules yourself, but they CAN have side effects, so please be sure you ALWAYS set up a treatment program with your doctor. (As I said earlier, I DIDN'T make my own capsules; I preferred to have a PRESCRIPTION called in by my doctor and made by my pharmacist -- (I had ENOUGH problems; I didn't need to create any more irritation or problems!) :) http://www.healthwell.com/healthnotes/Supp/Boric_Acid.cfm Keep us posted on your progress. Deborah
CommentDeborah, Thank you very much for all of the information. I am currently working on a prescription for Lamisil that my doctor wrote for me. It has helped more than anything else so far, but I can still tell it's there. If I finish the Lamisil and I'm still not cured, then I will be sure to discuss your treatment with my doctor. Thanks again!!
CommentDeb, I tried the PharmAssure Calcium Citrate Malate that you had mentioned in your entry from 10/20. (The regular calcium citrate hadn't worked for me either.) I've been on it for about 2 weeks now. I think it may be helping a bit. Thanks for the recommendation! The other thing is that I read Shannon's entry from a few days ago. She had a lot of good information in it. I had heard once before about how spinal alignment can be a cause of some women's vulvodynia. I guess that the spine being misaligned can pinch certain groups of nerves and cause all kinds of dysfunctions. When I looked back at your 10/20 entry to get the calcium citrate info, I noticed that you said you had other problems in addition to vulvodynia - low backaches, gastrointestinal problems, bladder pain. Have you heard of ppod - pelvic pain and organic dysfunction? Ppod is a disorder characterized by various combinations of symptoms of chronic pelvic pain, and various disturbances of bladder, bowel, gynecologic and sexual function - vulvodynia included. Sometimes the only symptom of ppod is vulvodynia. There's a really interesting website that a fellow vulvodynia sufferer referred me to - it's www.ppodsyndrome.com. It might be worthwhile to look at if you haven't already. Take Care, Amy
CommentAny of you that have used boric acid capsules did you have any reactions to them. I blistered so bad that the blisters would weep and when they broke open it would feel like I just peed in my pants. I have extremely sensitive skin and do react to alot of different treatments. Just wondering if anyone else had reactions. Better days to us all. Chris
CommentHi , I just checked out the PPOD web site and thought it looked interesting until I took the questionare for a self diagnosis. I only checked three symptoms and the point total was enough to put as a likely PPOD sufferer. Reading about the treatment was confusing until you get to the cost part. It was very clear it is very expensive. Sounds like a chiropractors scheme. It's just my opinion, I could be wrong. jen
CommentHi, I was just wondering if anyone has linked any of their symptoms to herpes. I know that the first thing our doctors do is rule out STDs and I had all the tests - all negative too. But I occasionally get irritation under my pubic hair and and sometimes a "pimple". I know that herpes can sometimes involve the nerves as well so I started thinking that some how that might be an underlying cause for some of my pain/irritation. I, of course, would rather not have that be my diagnosis, but I am just trying to get some answers!?! Does anyone else have similar symptoms and also think nerves are tied in? Thanks!
CommentGreat website! It's been awhile since I visited here, but I have been having more problems with vulvodynia these past few months. Starting this year, I have started to have vestibulitis problems, including red, swollen areas that are quite painful to touch. I have been having lots of yeast infections as well and can't seem to get rid of them. Have had major problems with yeast infections since I was 13. I am 22 now. I am on a very low-sugar diet which prevented yeast for about a year or so, but the yeast is more frequent. I need to start taking acidopholis and garlic tablets again. Also have very painful periods, heavy, tired, feverish. Does anyone else with vulvodynia have severe problems with menstrual pain and other symptoms I described? I will be moving to Lincoln, Nebraska in January. Does anyone know of a good gynecologist in the Lincoln or Omaha area that they can recommend to me? Please contact me by email. Thank you.
CommentJENNIFER: You're welcome! Hope your doctor is able to help you soon. I know what it feels like to be in pain and feel like no one can help. Hang in there! AMY: Thanks for the tip! I'll be sure to check that website out!
CommentI am going to repeat my post as of about 4 weeks ago(?). I have been taking effexor 37.5mg twice a day and calcitrate 1-2 times a day, glucosamine sulfate 1-2 tablests a day, and rinsing EVERY time I urinate (with tap water). Sometimes I apply a thin layer of Crisco solid shortening if my skin feels dry down there. I have been essentially symptom free now for about 5 months. I have had two minor setbacks that responded nicely to one dose of diflucan. This is after TWELVE miserable lonely years with vulvodynia and vestibulitis. I urge all of you to try this before using any other creams and definately surgery. Thanks for reading and good luck--Lisa
CommentHi, Lisa, just so I understand completely, do you have primarily vv or a generalized vulvodynia involving the entire pubic area. Thanks, Jean
CommentThis message is for Lisa who was inquiring about using Estrace crm. if you are younger. I am 25 and have used estrace for 6 mo. It has helped me tremendously. My skin was so thin, and raw before I started it. I wrote a long message about my treatment about a month if you want to read about what my full treatment is. The theory is that the estrogen receptors are not working properly, which in turn causes the skin to thin. Once my skin thickened, which it did after about 3 mo. of treatment, I added a steroid crm. The steroid crm. will not work if your skin is not healthy. I'm using the steroid crm. because after 4 yrs. I was diagnosed with lichen slcerosis. Hopefully this will help you out.
CommentMary & Suzanne, Just read your posts and wanted to chime in. I also think the pill was responsible for my VVS. I've gone on the pill twice, and both times I became very depressed and then started having burning. The first time was pretty mild, and went away after about 4 years (I was on the pill for 4 weeks). This time around it is a lot harder to deal with. I went off the pill about 6 months ago (again, I was only on for about a month). I'm hoping that I can recover again. I think there is definitely a link between the two. Erica
CommentThis question is for Deb: I was wondering if you have gone back for a test to see if you're suffering from the same yeast you were battling a few years ago but maybe it's in smaller quantities now? I'm curious because my Gyn. prescribed Mycolog to treat my symptoms, which has the same ingredient (Nystatin) as the suppositories you used. Just some general thoughts: I've decided to give this creme a try, I hope to report back with some positive news. I realize from reading the posts here from so many different women that our symptoms seem to stem from different causes. Some ladies have obvious nerve damage, other seem to suffer from severe allergies. I'm so frustrated that my symptoms appeared after using Keflex, because I've used several different antibiotics in the past with quick recovery and no ill side effects. A day hasn't gone by since May that I haven't regretted taking that course of Keflex. I only hope more research is going to be conducted on the effects of antibiotics on women, because we seem to be suffering from some pretty upsetting conditions following the use of them. I thank God my children have been able to fight the majority of their illnesses without the help of antibiotics, I hope this will continue throughout their lives. Sandee
CommentHello, I have a group called interestitial cystitis and chronic pain . I have several people in there that have Vulvodynia and would like to know does anyone else have that problem? Having IC also. Thank you URL http://www.egroups.com/group/interstitialcystitischronicpain
CommentI have now had five treatments from the Chiropractor. And most of the day I go without pain.(I have had one day without pain). The pain I now get is not as bad. I can not believe how much relief I have gotten. I will keep you all updated.
Commenti am 29 years old and was diagnosed with vulvodynia 2 months ago. my symptoms are itching, occasional pin prick stabbing pains and slight burning. the worst symptom is the terrible pressure i feel in my bladder. i have no frequency, but it just feels like i have to "go" all the time. anyone else? does anyone know of a competent doctor in the EASTERN PENNSYLVANIA/MARYLAND region? i like in york, pa and am having a hard time finding a good doctor who knows what this disease is. my current doctor said i have 3 options...1) doxycylcine and premarin cream 2) do nothing or 3) surgery. he doesn't give me much hope in the medical profession. amy
CommentAmy, a wonderful place to begin would be to see the vulvar pain specialist in Philadelphia who works at the urology department of Graduate Hospital. She is an NP and her name is Susan Spadt. You can get the number from information
CommentSANDEE: Just responding to your question about the atypical yeast. After I finished my nystatin/boric acid combo, my doctor did retest me (a couple times if I remember correctly) for the yeast, but it was gone. I had asked her to do this because I was expecting to feel "perfect" again once I got rid of the yeast. (Who knew I'd be left with the title "vulvodynia sufferer?") But, anyways, my symptoms, while not gone completely, were GREATLY reduced. I have flareups: usually all at once, too. I mean when my lower back starts to ache (feels like a combination of having menstrual cramps and the pack pain from having slept too long, you know what I mean?), I usally ALSO get more discharge and itching and rawness. They seem to go hand in hand. Also, feel worse when I have my period. ANYONE ELSE NOTICE A CHANGE IN THEIR PERIODS WHEN THESE PROBLEMS FOR YOU STARTED??? Mine is fairly non-existant now. One or two LIGHT days, and it's done. Strange for ME. Not the way I used to be at all.
CommentAMY: Vulvodynia sufferers have LOTS of different options. I've NOT had the surgery done, but I would DEFINITELY get more than one opinion (and research your other options carefully!) before I'd do surgery. I, too, have the bladder pain. Has your doctor recommended the low oxalate diet/calcium treatment method to you? Talk to him about that. There's lots of info on these guestbooks about that; also lots of info on the web.
CommentAMY: Vulvodynia sufferers have LOTS of different options. I've NOT had the surgery done, but I would DEFINITELY get more than one opinion (and research your other options carefully!) before I'd do surgery. I, too, have the bladder pain. Has your doctor recommended the low oxalate diet/calcium treatment method to you? Talk to him about that. There's lots of info on these guestbooks about that; also lots of info on the web.
CommentHi Deborah, I have the same problem when my period comes. Two days before and during my period, my symptoms get a lot worse. There is a lot more burning and itching. I recomend you to take an over the counter pill call "uristat" so when you have to urinate, it does not burn the skin that much. You get them over the counter and they are red.
CommentMARY: Thanks for the tip! It is so nice to be able to come here and "bounce ideas off each other" and just "talk" to someone who understands. We're all in the same boat, so to speak, and it's nice that we can be here for each other. Something really strange happened to me recently. I found out a co-worker(!) also suffers from vulvodynia! What are the odds of that?? Wonder if I took a "survey" here, how many others I would find! Seems like it gets easier and easier to find a fellow sufferer. Sure wish the medical community would hurry up and find out what actually causes this and how to cure it for good!
CommentHi, Does anyone use the Real Time Chat option? I have found it really hard to get into. It keeps telling me I have not registered and when I do it over, it tells me they will send an e-mail to confirm and they never do. It seems like a lot of the guestbook entries could be easier addressed and quicker to respond to some of the questions and answers going between individuals using the guestbook. Just a suggestion; especially if you contacted through e-Mail and designated a time to be on Real Chat at the same time. I just hope my feeble brain can figure out how to get registered. Thanks!
CommentMy name is Tami Hinden. I am an acupuncturist at the Sound Shore Medical Center in New Rochelle New York. I am conducting research on the efficacy of acupuncture in the treatment of vulvar vestibulitis syndrome. I am seeking volunteers formally diagnosed with vestibulitis to participate. Volunteers will receive two, one hour acupuncture treatments per week for a total of eight weeks. All services are offered at no cost to volunteers. If you are interested or know anyone who may be, please have them email me at the address above. Thanks for your help. Tami
CommentHi ladies. I am sorry for all of your pain. It is very frustrating! I was hoping to do a bit of comparsion to help differentiate cause and treatment options. I am 25. My problems began when I got a severe yeast infection about a year ago. I used an OTC medicine and it seemed to go away after about a week and a half. Except after that, intercourse with my boyfriend was very painful (burning, swelling) especially with contact with semen. I went to the GYN for a full workup (which was fine) except that he said I had a bacterial infection that was causing my problems--he put me on antibiotics, but after 3-4 weeks I was still burning during intercourse most of the time. Luckily, this partner and I broke up shortly there after (scum bag) and I didn't experience pain (or sex) for 3-4 months. When I started being intimate with my current boyfriend, everything was great, no pain whatsoever. About 1.5 months later, however, I got another yeast infection, treated it myself, but again felt the horrible burning swelling with sex. New doc said I still had yeast present and put me on diflucan and tetrazole? for a few weeks. Since then (six months ago), I have had pain with sex most of the time, been back to the doc 3 times and he said NO yeast or bacteria and he doesn't know what is wrong. Also, the most recent episode has been accompanied by mild burning, itching and slight stinging stabbing pains (outside of sex) Found a new doc who put me on 2 week oral anti-fungal and again tetrazole. I think this cream has made me worse. Anyway, I am trying citracal, glucosamine, and vitamin E oil. I was hoping someone with similar symptoms and origin as mine has some advice or insight. Also, just out of curiosity, how many of you have been diagnosed with HPV or any other viral conditions (herpes?)
CommentDeb- I'm sorry to hear you were left with the symptoms of vulvodynia following your treatment. You certainly have contributed some helpful info here, though! It's interesting about your co-worker. I really believe more women are going to be diagnosed with our particular form of vulvodynia in the years to come. It would be so nice if a cure was found, and what about more clinical studies to study the symptoms and their causes? It seems as long as we're having to rely on antibiotics and antifungals for our health we're going to develop these life-altering diseases. I wonder sometimes just how many women were tested before these products go out on the market. I think the drug companies should share some of the responsibility for treatment and research. I'm still frustrated though about the high dosage my doctor perscribed for my course of Keflex. According to many web-sites, I was taking twice what is generally recommended. I pray and hope my body will recover from the damage done to it. Now for the women out there who are in the same boat as Deb and I, I was wondering if you think our form of vulvodynia will one day be included in the list of autoimmune diseases. I'm asking this because my aunt, mother, brother and sister all suffer from diseases related to a over-active immune system. I was wondering if I would develop any, and now here I am with a condition that leaves the majority of the medical profession completely puzzled. Wonder when some developments will be made in healing our immune systems? I believe this would be the answer for our unexplained condition.
CommentI just discovered this board after doing some research on the web. I am convinced I have vulvodynia, even though I haven't been diagnosed. Since August I have had three antibiotic courses including Levaquin, Penicillin and Flagyl. I have also have a hx of sebaceous cysts on the vulva which my MD has removed in the office over time. The antibiotics were prescribed after I complained of pain, reddening of the area, burning, etc. after she drained these cysts. For 5 weeks now I have these symptoms on a daily basis. I do not have an infection. I will try some of the suggestions such as Citracal and glucosamine. Meanwhile, I'm looking for an MD in the Long Island New York area who is familiar with vulvo dynia. Would appreciate it if anyone has a recommendation. Thanks so much for this website.
CommentHas anyone found a good, compassionate Gyn. in the San Diego area? Please post if you have. Thanks in advance.
CommentI've just spent about two hours reading some of these postings and crying through some of them, too. Some of them sound like I could have writte |
